I love nothing more than trying something I haven’t tried before, and seeing what comes of it.

My dear friend Sarah has a similar energy. We met when we were getting our masters in social work, back in 2014. Sarah is an incredible therapist and a Somatic Experiencing Practitioner who works primarily with burned out millennials.

Through therapy, coaching, and workshops, Sarah helps people connect how their thoughts and emotions are showing up in their bodies. Sarah supports people who are overwhelmed and burned out, helping them find ways back home to their body so that they can feel more grounded and present, more often.

Bonus for you all? Her voice is so soothing.

The cross section of my work with the sandwich generation and Sarah’s work with stressed out millennials is this: our current culture encourages people to tolerate feeling stretched thin and overwhelmed.

It takes active, intentional effort to slow down, identify what you need, and build routines that prioritize your wellbeing. Sarah and I wanted to talk more about that. And that, my friends, is how “You Good?” was born.

Each episode, we sit down with guests to talk honestly about what self-care actually looks like in real life. Not the sparkly Instagram version. Not the “take a long bath” version (no shade, you know your gal loves a long bath).

But what we wanted to know was how people cared for themselves on busy days, on hard days, and during those stretches of life where time and energy feel virtually non-existent.

The way our guests talk about how they care for themselves is as unique as the guest themselves, because finding a way to care for yourself is personal, not prescriptive. You need to find what works for you.

Our hope is that this podcast gives you ideas of new things to try, so that you can continue to figure out what works for you. It’s an ongoing process, after all. None of us is ever “done” caring for ourselves.

Our trailer is out now! Please go give it a listen here.

And if it resonates with you, we would love your help:

Rate and review us: this makes a huge difference for a brand new show and takes less than 30 seconds.

Follow You Good? on Spotify so you’re first to know when episodes drop, starting next week!

We are so glad you’re here. And hey, how are you, really?

Thoughts about our unspoken biases towards aging and what it means to be “old” have been knocking around in my head ever since I interviewed Hope about her experience in the sandwich generation, supporting both her parents and her husbands’ parents as she raises her kids. Hope speaks so clearly about her views on aging, and honestly, it says a lot about our culture that I found her mindset to be so refreshing and thoughtful. If you haven’t read her interview, run-don’t-walk to go do so now. Find it here.

If you don’t have time to read it right now, you can get the gist of it from this quote from Hope:

“There’s so many messages of, stay young, get the anti-aging cream. I don’t want to fear old age, and I don’t want my kids to fear old age. It’s still a treasure that people get to live so long to see their grandkids, and be at the sporting events and the band concerts. It’s not something to avoid, but also it’s not easy. Trying to hold the beauty of it, and the terribleness.”

The ideas I’m letting swirl around in my brain, and the subsequent questions I want to pose to you are:

• When we fear “old age” it impacts how we look at this stage of life, and how we care for our parents as they age. The beauty industrial complex and the messaging we receive (thanks capitalism) drives us to want to “fix” something that is not inherently broken, in an effort to assuage that fear.

  • What do we create space for within our own internal processing of aging, if visible signs of aging do not immediate trigger a response to “fix”?

• We are always, always teaching our kids. Even when we wish we weren’t, we are sending them messages that they subconsciously adopt, judgments that they then feel comfortable making on others, and internalized fear of their own mortality.

  • What can we be teaching our children about aging instead of this fear and judgment?

• Hope considers how she would want her kids to care for her, when she is making decisions about how to care for her parents. This “walk a mile in their shoes” mentality bumps against one of our biggest defenses against accepting the reality of aging, which is: if I don’t acknowledge that it will happen to me, then maybe it just…won’t. We know this logic is false, and yet it happens all the time (the same defense mechanism pops up with how we view our unhoused population. Don’t get me started on this one).

  • If we instead approached aging with acceptance, how would it impact our caregiving choices? How we talk about aging with our kids? Society in general?

• Hope says “It’s not something to avoid, but also it’s not easy. Trying to hold the beauty of it, and the terribleness.” Aging is not good or bad, easy or hard, positive or negative, beautiful or terrible. It is both, and everything in between. Embracing a dialectic mindset allows us to be present in the moment for the full range of what caregiving, aging, and parenting can be. It encourages acceptance of what is, and less judgment of what it “should” be. Everything it is, it is.

  • What might happen if we embraced the complexity of this phase of life?

Can you try to stew on just one of these questions, and see what comes up for you? Doing the internal work supports our well-being, our relationships with our aging parents, and the messaging we send to our children every day.

Feel free to leave a comment with what resonated, what feels sticky, or any questions that are rising to the surface.

Feel compelled to bring this dialogue into your friend group, family group text, or community? Hit share below.

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When Support Systems Rearrange

Lissy: Can you speak to when you first realized that you were in the sandwich generation?

Sara: Well, I guess the first thing was that motherhood, before I got to taking care of anybody else, was much more overwhelming than I expected it to be. My older son went to the NICU when he was born, and he was fine. But looking back now, it put my nervous system into such a state of fight or flight. And I really had trouble getting out of it.

I had just thought, I’m gonna become a mom, and I’ll be able to work a little less, and still have my career…I was both a yoga teacher and a journalist, and I had been a freelancer for a while before that, so I was sort of juggling a lot of balls at any given time. And I just assumed that I would be able to go back to all of that while being a mom, and that was very unrealistic.

Lissy: I mean, I think we don’t know until we’re in it.

Sara: No. But at that time, my mom and my grandma were a huge support to me. I would also say that there were a couple of pieces in place. One, my husband is a pediatrician who works huge hours. I love and respect that about him, but somebody who had a partner with part-time flexible hours, it might not have been as difficult. And then in journalism, you have to be available whenever someone calls you back. So, that was also a very hard career option with a baby.

But my mom and my grandma were coming to New York from Connecticut, they would come every Thursday morning and sleep over until Friday. My mom was sort of taking care of my grandma, they lived together, but they were both support, and that was 2 days a week of childcare for me.

And then, when my older son was 3, and my younger son was 1, my mom got cancer. She was a yoga teacher, and you would have thought she would have died on a mountaintop at 105. She was a picture of good health and vitality and all the right habits, and it didn’t matter. So, that year was just a whirlwind of helping to take care of her, and to do some things for my grandma. But there were a lot of hands on deck at that time.

It was just so overwhelming to me that I’m not sure if I thought of the term sandwich generation, I just thought: I have to do all of this. My mom died in May of 2018, when my kids were 2 and 4. And then my grandmother, who had lived with my parents and was completely reliant on my mom, I wanted her to come and live with us.

There were a lot of places she could have lived. It wasn’t that it was the only option. She could have stayed with my dad. She could have stayed with her son. There were a host of adoring nieces and nephews who would have taken her, but everybody felt that for her to survive the loss of her daughter, being with great-grandchildren was the best option.

My sister, at that time, didn’t have any kids. She lived in Brooklyn, I’m in Queens, and she was very involved in coming over and helping however she could. She also did a lot during our mom’s chemo, because I couldn’t be at all of the treatments, with little kids.

So in the summer of 2018, my grandma moved in upstairs, at 92-years-old. We got a second apartment upstairs. We were in a small enough apartment that it wasn’t physically possible for her to be in the apartment, but she was right upstairs, and I had two little kids, and so then I was very squeezed. And that lasted until she died in November of 2020. So that included the beginning of the pandemic. And we were living in the epicenter, the epicenter of the epicenter was Queens, and my husband was working in our neighborhood hospital, so it was an incredibly stressful time.

Lissy: Yeah. I mean, hearing about your experience, what I think is really interesting is that these are the things that you can’t really plan for. The idea that your mom is caring for your grandma, and then your mom is the one that gets sick. It kind of defies expectations in a way that then can leave you scrambling.

And make it even harder to show up for your mom when she was sick, when you’re also thinking about all of the things that she was doing for your grandma that now somebody needs to do, if she’s knocked out by chemo, or not feeling well, or at the end of her life, you know?

Sara: One day we were trying to figure out how to sort my grandmother’s 8 different medications, and my mom was the only one who knew how. And she was dying and not able to talk to us about it. It was very hard.

Lissy: Yeah, it just makes a really difficult thing even more complex.

Sara: Yeah. For the last 5 years, I’ve been working on a memoir about that period of time. I took notes throughout the whole thing. And I’m still a mom with two young kids, and my dad had first been diagnosed with prostate cancer in 2010. My mom also took care of him during his initial treatment, and then last summer we learned that his prostate cancer had metastasized, and that came at the same time as my sister’s son was born. So, he started chemo in January, right at the time of my nephew’s birth, so clearly my sister was not in a position to take him to treatment, so I have done that. She’s helped an infinite other ways. I think one great blessing through all this is how we have supported each other, which I know not all siblings have.

His chemo has been challenging, but a walk in the park compared to what my mom went through. We’re actually on a break from chemo now, after 13 rounds, which is great. We’re not sure yet what’s next. He’s just getting monitored right now. But the chemo generally involves waking up at 4 o’clock in the morning, and there’s usually 4 to 5 people that I’m in communication with to fill in for a day of me not being here. My kids are at two different schools, they have after-school activities, the dog needs walks.

Lissy: How old are your kids now?

Sara: They’re 9 and 11. One’s in elementary and one’s in middle school. They’re old enough that they have their own social calendars and activities. But not old enough that they can make plans for themselves.

Lissy: Yeah. I imagine reaching the point where your kids want to take some control of how they’re spending their time feels really cool, but then also they don’t have the logic and reasoning skills to understand what is perhaps a reasonable or unreasonable plan?

Sara: Yeah, and it’s just a lot to coordinate logistically.

The Unexpected Benefits of Caregiving Under the Same Roof

Lissy: Yeah. What was it like when your grandma moved into your building? What was it like for your family dynamic, and how was it for your kids?

Sara: Everybody called her Bubbi. I did, they did. My husband was amazing in not blinking an eye when I was like: your grandmother-in-law is coming to live with us. My younger son was only 2 at the time, so he didn’t have a huge understanding of what happened, but my 4-year-old was really sad that his grandma had died, and he knew that she was really sad that her daughter had died. And so we wanted to be together with her. She showered them with the kind of love and attention that I often wished that I could. While I was frantically cooking and cleaning up after everybody and making the plans, and sorting the pills, she would just sit and read to them for hours at a time, and that was a beautiful thing.

It also was a beautiful thing for them that she was like the matriarch of the family. She had been the youngest of five siblings, and she was the last surviving one. She had all kinds of nieces and nephews, as well as friends who would come to visit, and her son came to visit from Boston all the time. So my kids got a real experience of a big extended family.

A few years later, when my younger son got to kindergarten, there was an assignment where he was asked to draw a picture of his family, and I think they just meant the people who live with you. And he drew 16 people. So that was beautiful. It was also stressful on me to be hosting all the time. And one thing that was sort of funny in retrospect, though it didn’t feel funny in the moment, was that my grandma had a bit of dementia, and people would call and tell her that they were coming, and she would forget to tell me.

So one thing, from a super practical standpoint, is she had long-term care insurance. That was a godsend. Because I was able to use that. They covered an overnight aid. Because I was worried about her falling, when she would get up to go to the bathroom all night long, and I was worried about her falling if she was upstairs and I was downstairs.

And then only 4 months after she moved in with us, she got placed on hospice, because she had a night of vomiting, and we brought her to the emergency room, and they found a mass in her pancreas. We declined a biopsy, because it would have been such an invasive procedure, and she was already 92. But they thought it was conclusive enough that they put her on hospice. I think it was benign, because she lived another 2 years after that. But hospice covered a certain number of hours of a daytime aid, which also became a godsend, especially once the pandemic started and I was homeschooling on top of it. She eventually got kicked off hospice for living too long.

But I think for people who are looking ahead, she had paid into that long-term care policy for many years. You can’t just decide you’re going to pay into it, and then you’re going to cash it in the next day. But I think it’s a really valuable thing for everybody to think about, because that made our living arrangement possible.

Lissy: Yeah. And I also think it’s something that is not really on your radar until you have somebody you care about who has it, and you see how useful it is, and then it feels crucial. But I think it’s something that can be overlooked, when people are doing their planning. I’m glad you were able to rely on that, especially thinking about you being able to sleep at night.

Sara: I did very little sleeping in those nights, but yes.

Lissy: I hear that, and it would have been even worse if you were also feeling she was alone up there, you know?

Sara: Yes. A thousand percent.

Delayed Grief and the Importance of Movement

Lissy: I’m wondering, because I think part of what I’m hearing is that when your grandma moved in, it was like: you’re grieving your mom. And then your grandma moves in, and it’s almost this symbol of your mom’s absence, having her with you.

Sara: She was an extension of my mom in many ways. And I feel I didn’t really grieve my mom until after my grandmother had died, because I was in such overdrive taking care of everyone, that I never really allowed myself to just sit and cry and process it much. Little bits, but not to the extent that I needed to.

Lissy: That totally makes sense. And I think it’s both emotional and then also just from a timing perspective, it’s like, okay and when would I do that? That makes sense, that it’s this kind of delayed process, and I think that happens so often for folks, where the grieving process happens when your body recognizes that you have space to hold it.

I’m wondering what you found helpful; what were the things that you relied on?

Sara: For me, movement and exercise have always been huge, which is why I have the offering that I do. My mother and I were both yoga teachers. I went through a ton of stuff in my own body that required me to scale way back on my yoga practice for a long time. But I do find that what I’m offering publicly is what I’ve used myself to get through this. If you can just find two minutes to do a stretch or do a breathing exercise, or something to help settle your nervous system, it is so much better than nothing. Exercise in various forms. I love meditation also, but if I’m being honest, when I could only fit in one, I will do some kind of movement. I find both the mental benefits of that, and my body had been through so much that I really needed to move to not be in pain.

Lissy: That makes sense. And I think depending on the type of exercise and movement that you’re doing, it can be meditative in itself to be able to drop into your body in that way, you know?

Sara: Absolutely. And fresh air. It’s remarkable how hard it is sometimes with little kids just to get everyone outside, but it makes such a difference.

When Conflicting Needs Arise

Lissy: Were there things that weren’t available to you, that you wish you could have had? In terms of support or access to certain resources?

Sara: This is a little tangential, but I had a horrible case of diastasis recti that turned into an umbilical hernia and needed to be operated on. I mean, I was teaching other yoga teachers, and I didn’t know what it was. And so much of what we do in yoga is contraindicated for it, but also I had every risk factor for it, and my OB never told me about it, and I was literally walking around with my guts hanging out, and so my low back was killing me. To add that on top of the caregiving burden was really a lot.

Lissy: You were experiencing chronic pain related to motherhood, happening at the time when you’re also taking on these caregiving roles. And it’s just that thing that happens to women so often, where it’s just: you’ll be fine, it’s just part of it, carry on. And so often there is an actual thing happening that does need to be addressed, but we’re often given this messaging that it’s just all a part of the process, and so then I think when you’re stretched so thin and trying to do a million things at once, it can fall into the background, where all of a sudden you’re just living with chronic pain.

Sara: I actually had an abdominal surgery, for the hernia and the diastasis when my younger son was 1. And it helped for about a month, and it didn’t work. The doctor wanted to go back and operate again, and that coincided with my mom’s cancer diagnosis. There was just absolutely no way. And for a variety of reasons I don’t think I would have wanted to anyway, but then I literally for a time had that sports tape holding my abdomen together, and that was as much as I could do for myself.

Lissy: What a perfect representation of where you were at. That’s really brutal.

Sara: But for sandwich generation caregiving, I think our whole society is just not really set up to support it, and I do think as more people are having kids later, and as people are living longer, there are more parents like me, who are taking care of their own parents at the same time as their kids are young. Historically, sandwich generation caregiving has been perceived as: your kids go to college, and now you have to take care of your elderly parents. But there are more people who are needing to do the child-rearing and the elderly caregiving at the same time.

Lissy: I think you’re totally right, and I’m so thankful that you’re turning your experience into a memoir, because I think this is the way we help people realize this is people’s reality so frequently. It’s not this tiny segment of the population tucked over there. It shows up in all these ways, but it’s almost inevitable, if you are choosing to have kids and have the experience of having your parents live longer.

The Challenges of Ongoing Caregiving

Lissy: Thinking about your dad’s treatment, and how you’re so many years into this journey, and it’s still ongoing: what are the routines or the practices that you’ve used to support yourself in this chapter of your sandwich generation journey?

Sara: I should say, my dad has a lot of friends who have been incredible to him, and he lives in Connecticut, which is an hour and a half, two hours away. He could have come to New York to be with us, but he wanted to stay in his house. The days of his chemo have been exhausting, but there are many days in between that I’m just living my life as a mom. Of course, my sister and I both check in with him through text or the phone every day, but it’s not the same as having somebody living with me.

After a chemo day, I will often feel that I need a couple days just to recover, because it’s so tiring. The planning in advance of how it’s going to work, even just packing our food for the day, because we’ll be in the hospital for 7 hours, and hospital food is not the best. I’ll sit there with his walking stick stretching my shoulders, and I take him to the bathroom, and I wait for him in the hall, and I will grab onto the bar and be doing a squat from it.

Lissy: I love that so much. Every time I get your email in my inbox with the suggestion of the day for the way to bring movement in, I just think: yes, this is how people actually will incorporate this into their day-to-day, if they can just be in between meetings, and do one little thing.

Sara: I mean, even think of a best-case scenario where you could do a full workout, or go to the gym, or go to a 90-minute yoga class, which I used to do before I had kids. And I am at a place in my life that I’m lucky I do go to a gym 3 times a week. But even then, your stress accumulates all day long. So if you work out for an hour, and best case scenario, you’re going to work out again for an hour tomorrow morning, you still have 23 hours in between that life is coming at you. And taking little breaks for stuff like this is helpful.

Lissy: Totally. People are so inclined to want to check the box, rather than having it be this ongoing…

Sara: Part of your day… yeah.

Lissy: I think about it similarly to mindfulness, which is something that I incorporate in my work as a therapist, that it’s not just a 20-minute meditation. Sure, that’s part of it, but part of it is also noticing…

Sara: What you bring into the whole day..

Lissy: …how the whole day feels, and how you work within it, noticing what is showing up in your body, and being connected in that way. I love that you do that stuff when you’re with your dad. I think that’s so important, to be able to sustain yourself through those long days, knowing that even if you do those things, it’s gonna take a lot out of you.

Sara: Yeah. One thing that’s hard, I think, for a lot of us at this time of the year, is kids get sick all the time, and when you’re taking care of an older person with a compromised immune system, you can’t be with them if your kid has the flu or the norovirus, or whatever. That’s tough.

Lissy: That’s so hard. And I’m remembering some of the people in my life who are medical professionals, and the protocols that they would go through to enter the house after a shift in the early days of COVID…

And you guys, with having young kids, having the intergenerational immune system struggles, I mean,

Sara: It’s big, and I don’t think it’s talked about nearly enough.

Lissy: It’s so hard.

A Mindful Legacy to Share

Sara: I love that I have my mom’s meditations available to share. That was actually how my email newsletter started, I brought it over to Substack a few months ago. I had known before my mother died that she taught meditation for 4 years at Yale Law School. I did not know until after she died that the classes were all recorded.

The day of her funeral, one of her students came up to me with a flash drive. And all of the recordings were on there. I was blown away. For a while, my newsletter was once a month, and every month I would send out another one of her recordings. Many of my subscribers are her former yoga students. But the sound quality on a lot of them is not so good. So it sort of got to the point where I was thinking, you know, I love to hear her voice, and the people who knew her well loved to hear her voice, but I want it to be something that’s more generally helpful. So my friend who’s a podcast editor, sound edited 10 of the fan favorites, and that’s what’s available now on my Substack.

Lissy: Oh, that’s so awesome.

Sara: It just means a lot to me to have that. I also have a playlist that she’s made for me of specific practices that are mentioned in my book, and someday when my book comes out, that will be available, too. For now, there’s 10 of them on my Substack, with excellent audio quality, thanks to my friend Victoria.

Lissy: That’s really special. I can only imagine the emotional experience of receiving that flash drive. What a gift to be able to access that.

Sara: I didn’t even realize it. She handed me a little gift bag and a card, and she said there’s something in here you’re going to want to see. And I was in such the throes of bringing my grandma to live with us that it took me a month before I had even gone to open everything that we got, and realized what this was, and I was blown away.

Lissy: It’s so special.

Sara: It’s called, Let My Mom Teach You to Meditate, and it’s so special. Yeah, it’s been a special thing to be able to offer people. And I love it when people who didn’t know her just enjoy the meditations just for their own sake, it makes me happy that her voice is still out in the world.

TL;DR: Biggest Takeaways and Reflections for Caregivers

• Raising young kids while caregiving is the new normal: as people have children later in life and older adults live longer lives, a huge segment of the population finds themselves in the sandwich generation. If this is you, you are not alone.

• Caregiving does not need to equal conflict: engage in meaningful, honest dialogue with your siblings about caregiving in a proactive, intentional way. It is possible to show up for one another with clarity and connection. Looking for a place to start? Try here.

• Sara’s mom’s meditations are available on Sara’s Substack: incorporate them into your day for a moment of mindfulness.

• The power of small movement: yes, it’s important to go to that weekly exercise class. And it’s also immensely impactful to bring in purposeful movement throughout your day. Check out Sara’s Substack, The Overwhelmed Yogi, for attainable ways to bring movement into your daily life.

• Resources to consider: long-term care insurance

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If you are interested in 1:1 coaching and resources to help you feel confident in how to navigate your time in the sandwich generation, please reach out to me through my coaching website, Sandwich Support Co, at the link below.

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When you were a child, the traditions you participated in were presented to you as an inevitable thing. It’s hard to opt out of things when you are 7 years old. But now, you are a full-grown adult with a family of your own. Momentum may carry these traditions into your present day, but you can make a choice around what you continue to engage in. You have agency in what traditions you perpetuate within your family unit, just like your parents did when you were a child.

I know, I know. You may be scoffing, thinking “as if it’s that easy.” But hear me out: doing things begrudgingly, with resentment and frustration, carries its own unique weight. And I’m not telling you to immediately tear apart the calendar! All I’m asking is for you to approach this holiday season with curiosity.

As you engage in your family’s traditions, consider these questions:

• How do I feel when I’m doing this? (resentful, frustrated, disconnected, joyful, connected, at peace, neutral)

• How are my kids liking this tradition?

• Is there significance to this tradition beyond “because it’s how we’ve always done it”?

Here is where the complexity comes in. You may have disconnected from the religion you were raised in, but when you go to Christmas Eve mass, you feel close to your Grandma, who died 4 years ago. If you go to mass and feel warmth and a continued bond with her, then by all means, continue going to mass!

Let’s continue to dispel the black and white thinking that can cloud our judgment when it comes to family traditions. Say your family always goes to Aunt Cheryl’s house on New Year’s Day. It has always been so. Oh yeah, and Aunt Cheryl also happens to be a 5 hour drive away from your parents’ house.

It’s one thing when you were a kid, living with your parents. But now, you are getting on an airplane for a 4 hour flight to even be in the same state as Aunt Cheryl. Do you continue to go to Cheryl’s house? Maybe! If it feels connected to memories, and is a comforting place to be, and worth the drive with your kids, then great. You could also decide that no, it is no longer a viable option to go to Cheryl’s. OR, consider the magical 3rd option: What if you propose going to Cheryl’s house every other year? Or every third year? If you continue to drag your family to Aunt Cheryl’s every year, what seems likely is that you become pretty damn resentful and bitter towards Cheryl. Does Cheryl deserve that?

I’m inviting you to bring intentionality into your rituals. So when your kid asks why you do something, you can speak to why it’s important to you, and the positive value it brings to your family. Let’s resist relying on the empty canned response of “because we’ve always done it.”

If you decide that it’s time to let a tradition go, or to make a change in the structure of things, consider these tips:

• Acknowledge the tradition, and that it has happened for a long time. Sometimes people just need to hear you say that you understand that it’s been a long-held thing.

• Speak from your point of view: you can’t assume Aunt Cheryl is in touch with how hard it is to travel with kids. Yes, even if she did it with her own kids back in the day. Describe how the experience feels to you and your family. “It’s really hard for my kids to be in the car for a 5 hour drive, after they were just on an airplane a few days ago. It’s stressful and uncomfortable for them.”

• Propose an alternative: people often feel attacked when you share negative feedback or state a problem without offering a solution. Give them something to consider as an alternative, so they can visualize the time together continuing on, just looking a bit different. “I’m wondering if we can alternate between Cheryl’s house and X other location.”

• Frame the alternative as a trial period. If the alternative is seen as a new eternal commitment, it can cause a lot of resistance. Instead, encourage a temporary mindset, with “can we try that next year, and see how it feels?”

• Conclude by reminding everyone what is important: “I love spending time together, and I want it to feel positive and joyful.”

Alright. Off you go, bringing curiosity and intentionality into this holiday season. I know it’s a lot, to ask you to do one more thing this time of year. Let’s think of it as research for Future You, and a way to increase the joy and connection you feel when you are with your family.

This exercise encourages compromise, creativity, and an honest assessment of both what you could take on, as well as what you are willing to take on. Make a plan and play to your strengths to help prevent stress and burn out.

Print out the PDF Version by clicking here.

Instructions:

• Share this document with everyone involved in your aging parent’s care.

• Everyone should complete Step 1 prior to meeting together.

• Organize a time for everyone to meet, at a time when everyone can focus and actively engage in the conversation.

Step 1: Individual Reflection

Print out this document so you can write on it.

Before talking with your siblings or team, consider your strengths. What type of tasks or challenges do you excel at in your professional and personal life? What feels natural for you to take on?

Check all that apply:

☐ Finances / Budgeting
☐ Legal / Documents
☐ Healthcare
☐ Leading Difficult Conversations
☐ Physical proximity to parent
☐ Organization and coordination
☐ Flexible schedule
☐ Research and outreach

Step 2: Share as a Group

Come together and share what you checked with one another.

Step 3: Identify Unchecked Areas

Identify the areas that remain unchecked. These gaps can lead to frustration and conflict. It is important to proactively work toward identifying a plan.

Some questions to consider:

• Are you interested in figuring out how to accomplish these tasks yourself?

• Are you willing and able to hire external help to complete them?

• Does your parent have the financial resources needed to cover the costs of hiring external help?

• What will insurance cover?

Step 4: Communication and Reporting Back

Discuss how to communicate and report back to one another. Choose one form of communication to rely on.

Receiving an endless barrage of texts, emails, and phone calls can lead to overwhelm and increase the chances of miscommunication.

Options may include:

• A designated text thread with a name like “Updates on Mom’s Care”

• An email thread that everyone uses that is similarly named

• Shared Note

• Google Keep

Something to Note

It is not fair or reasonable to compare these tasks. Comparing attending ongoing medical appointments and arranging documents with a lawyer is like comparing apples and oranges. Or apples and a stapler. One is not better, harder, or worth more points than the other.

What is helpful:

• Acknowledge the impact of each task on one another

• Check in to see if the balance is feeling sustainable

• Adjust accordingly

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A Devastating, Unexpected Event

Lissy: Even though there maybe wasn’t the exact term for it yet, when did you first know that you were in the sandwich generation?

Susan: I mean, it was when my mom had her event. Up until then it was just sort of grandparent stuff as usual. Before that, my grandpa had died when you were 2 or so, he was 90. I was there for that, but it wasn’t my show. It wasn’t my responsibility.

I would say it was when my mom went down hard. Now, she developed asthma right around the time you were born. So there were those 10 years, but it was a manageable thing, or it should have been. And she would have times where she would go to the hospital so they could regulate her meds and things. Just trying to figure it out, because it was an adult onset type of thing.

There were some concerns, but at the time she died, she was 67, my dad was 68. They weren’t, old people in that sense.

Lissy: Yeah. Can you walk us through what happened with her event?

Susan: Sure, It was a nice and warm October day, which turned out to be part of her issue. I went over to our neighbor’s deck and had a glass of iced tea before I picked you and Mal up from school, and then took you to ballet. You guys are in your various ballet classes, and your dad comes in, which was strange, because it was still during the work day. And he said there’s an issue with your mom. She had some of these before, but this clearly was more a big event. And he said, I think we need to go to Platteville. So, let’s see… how did that work? I don’t even remember who you stayed with, or if someone came over. Because I don’t think you went that time. Do you remember going that time?

Lissy: No.

Susan: You came at a different time. Because he and I went, and then I stayed, and he came back and got you guys. They think she had come home from a get-together at a friend’s house in the countryside, a big luncheon, and had gotten dropped off. And as she was coming in, the city was doing chipper shredder of the fall debris. And so the thinking is that there might have been enough in the air to set off her asthma to a high level.

And the next thing we have documented is that she called 911, and all she said to them was asthma. And when they came, there’s a thought that she maybe had pretty much passed away by that point. But when they come in the door, they have to do all the first responder things, because they don’t know if it was the second before, or in the whole process, So they scoop her up and take her to the hospital, which is just a couple minutes away. And she never came out of that situation.

There wasn’t a big, full-on autopsy. But it appeared that maybe the stress of the repeated asthma things was hard on her heart. Because earlier in my childhood, she had a tachycardia issue. Which, you know, it’s not life-threatening generally, but it’s a thing.

And so, by the time we got there, she’s hooked up to all the things. And all the siblings were there, and my dad was there. It was 5 or 6 days of this comatose state. But during those couple days the neurologist did testing and was able to ascertain that there was no function above the brainstem. So there was no sitting around and saying your prayers and hoping for the best. There’s no best left.

It was interesting, because I sat with her a lot during that time, because my sisters and I were staying at my dad’s house, and there was a time where she seemed to be more there. And then there was a time where she seemed like she was not. It’s hard to explain, but I’ve talked to people who’ve felt the same thing in a similar situation.

And then you and your sister came. Your dad brought you, and you were able to kind of tell her goodbye, but she could not tell you anything back.

In the rearview mirror, you go, well, at least we got to say goodbye to her. You can do a lot of things with it to try to soften the edges. But, it was such a concentrated thing.

Supporting Kids in the Immediate Aftermath

Lissy: I think at the end of the day you just don’t expect that, when someone is 67 years old. I wonder if it was even on your radar, how to talk to Mal and I about all of this as it happened. We were 8 and 10 years old? It’s not like you could be having these ongoing conversations to prepare us, because it was so out of the blue.

Susan: Yeah. You had been around for when your grandma’s dad died, your great grandpa. You kind of had an experience, at least with that situation, but you were tiny. One of the things we did was, you had a pediatrician who I had a really good relationship with, and you girls did too, and he was the kind of guy where he had several kids of his own, and they were all a little bit older. He was a good resource in that way. I remember calling him and he said they might have trouble sleeping, all this stuff.

He said the other thing is, sometimes the kids just kind of go along to go along, or they see that you’re diminished, and so they don’t put the burden on you. But don’t be surprised if months from now, all of a sudden you notice things. And what you need to recognize is it’s delayed grief. And all the anger, and all the ball of wax that goes with it. It was really good advice to get.

One of the nice things is that you guys had your cousins who you were so close to in that family. You would look to Rachel and Nate to see, well, what do they think? How are they dealing with this, and what am I supposed to do?

My parents lived 3 hours away, and we saw them fairly periodically, they would come for your dance recitals, and they would come for birthdays, and we would meet up for things. But you had a good relationship with her. You had a good, solid connection. When you guys were little, she said I don’t care to hear any of the bad stuff. I raised 5 kids of my own. I don’t need any of that. Only tell me the good stuff. And you guys knew that, I swear. Because we could not see her for a month or two, and there was never any ground lost. You know, and back then, there wasn’t FaceTime or other things like that.

Grief, Continuing Bonds, and the Power of Anniversaries

Lissy: That’s so funny. This is a little bit of a leading question, because I have memories of this, but I’m wondering if you can speak to how you kept her memory alive. Both, within your own internal process, and then if there was anything with your siblings, and then with Mal and I and the family.

Susan: She had taught you girls how to make Lefse. Which she had learned, not from her mom, but from her mother-in-law, who was Norwegian, and who she had a good relationship with. My grandma had one daughter and four daughters-in-law, so they all got along really well, and that was something they had done, and so then she had taught you guys how to do it. That was one of the things, because it was a tradition, and it was a clear memory that you guys had of her.

And then, you know, we would go to Platteville right after she died. I had this grand idea that we would go once a month to help check in on my dad, because he was kind of a mess at the time. So at least we were there in the house. He was a complicated guy, and he was very reluctant to let anything go out the door. There were things where I was wishing that he would have gifted you girls. And he just didn’t, for any of us. Some of the stuff that helps me keep her memory alive is stuff I got after he moved into his memory care home.

Including the desk I’m sitting at, which was my mom’s pride and joy, but then it sat in the house for, well, he outlived her 22 years. I have things that she gave me throughout my life, times where she would say, what do you want for your birthday? And I would say, how about your little red milk pitcher, if you’re done with that. [the little red milk pitcher sits on a shelf in Sue’s living room to this day]. She had a lot of stuff, and she was happy to be sending some stuff out the door. And sometimes she would say, don’t tell your dad I’m doing this. And she said, whatever you do, don’t bring it back. So we have some things that she gave me, for my birthday or Christmas. And so those things are precious.

My dad did give me a ring that had been a gift to my mom from one of her aunties. And, it’s so nice to have. I used to carry it around with me, and our family would go to cool places that I knew she had never been to, and I would always have it with me. If I didn’t wear it, I would have it with me. Kind of like what people do with ashes.

Lissy: I like that. I remember, especially in the first years following her death, I remember you being really sad on her birthday, or was it the anniversary of her death? And I remember Pops saying, she’s missing her mom, and this is how it goes when you lose somebody you love.

And so I have this really clear memory of first learning about the power of anniversaries in that sense, and how it can bring someone into the room. They’re always with you, but then there are times where it really just shows up in these big ways. And now, what I appreciate now, being a parent myself, is that you didn’t try to grin and bear it, and pretend nothing was happening. That you were able to be in your grief. I think it is such a healthy example to set about grief and emotion for kids.

Susan: You know, I appreciate that. And I still do that. It’s that time in October, there’s something about the time of year. The switch to fall, it’s right after your birthday, which was a joyous time for her. And so then when your birthday would come around, it’s, oh, she’s missing another one.

There’s a writer, and I can’t remember her name, but you know how things just stick in your head, and she called it, The Secret Anniversaries of the Heart. That day doesn’t mean anything to the person on the street, usually. But to you, it does. It’s a day of loss. And I try to be celebratory on her birthday. And my siblings and I, we send notes on her birthday. That’s when we celebrate her.

And then on the day of her death, but I mean, which day did she die? Who the heck knows, really. And ironically, the legal day is also my Uncle Wayne’s birthday. So I would always send him a birthday card, and then think, this many years, that he’s been without his sister.

I still set aside that day. And I just read the book that had been sitting on the back burner, and I just don’t do anything for anybody. It’s kind of weird, but it works.

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How One Parent’s Death Marks a New Chapter for the Other

Lissy: I’m thinking about how it went down with Grandma and Grandpa, and how Grandpa lived for 22 years after she died. It seems like Grammy Mae’s death marked the beginning of you and your siblings having a different role to play for Grandpa. You know, it’s almost like her death marks the beginning of the next chapter of your caregiving journey.

Susan: Oh yeah. Yes, and it’s something that a lot of people experience - it’s not only us. But when there’s a couple, and one goes, you realize that the person who’s gone was a filter, or was the connection, or that the dynamic wasn’t equal. And even though you knew that in life, it really shows in a different way. So that wasn’t terribly unique to us, nor was it surprising, because it’s my dad’s personality. By then, we were all adults. You know, Tommy was the youngest at 31 years old. He knew my dad’s personality. It was no surprise. But you appreciated how much the filtering by my mom had sort of softened the landing, maybe.

He just went out and was doing his own thing, but he was checking in on my grandma, who lived in town, who outlived my mom by 5 years. She was 98 when my mom died. And I’m sure you remember, we would go to see your great grandma. But at least he was attending to her needs, and checking in on the place she stayed, which was nice, but you still need to pay attention. We found out later that he also had girlfriends working there. But it still got done.

It was after my mom died that your uncle Jeff took the reins for all of us getting together in the summer. And at holidays, we would meet at your grandpa’s house, but he was worthless, basically. And so, we would all rally the food and the linens and get it all together.

Lissy: Yeah. I think that’s such an interesting point, that it wasn’t surprising to experience how much of a filter your mom was, and the glue. And that before she died, you didn’t need to worry about his behaviors as much, either because he was behaving better when she was alive, or she was keeping an eye on it, and it wasn’t on your radar in the same way.

And then needing to decide how much you need to worry about this, and how much do you just say, not my problem. But if I’m remembering correctly, some of it was poor financial choices, and things where it was your problem, because you want to make sure he has the money he needs to live.

Susan: I think it started happening incrementally, because he was only 68 years old, and he was very comfortable financially. But I think that the older he got, and you know, 10, 15 years later he was definitely being taken advantage of financially. And a lot of things we didn’t really find out until we were undoing that big ol’ house. Once he was out of the house, and we could actually get into the nitty-gritty of some of it. And we even talked to an attorney here in town, and she said you know, elder financial abuse is a tricky thing, especially when it’s a relationship that he had back when he was 68 and of sound mind and body.

Lissy: It’s complicated.

I’m reflecting on how long you guys were in that caregiving space with Grandpa. When I think about my work, and how our own personal experience impacts what we’re interested in. It lays the foundation for me, having grown up seeing you guys navigate all of this, seeing how much teamwork and patience and strength of your relationships with your siblings it took to be able to navigate it all. I have such clear memories of all of the years of you guys figuring this all out, and visiting all the ancient great grandmas in their care facilities, and then everything with grandpa, for so many years. And seeing how much time and energy it can take to do these things and to do them well. I think it has made me just, innately interested in it.

Sharing the Load by Divvying Up Caregiving Roles

Susan: The five of us feel very grateful that we’ve come out the other side of it and we’re all still friends. Because that doesn’t always happen. One of the things I learned that I’ve shared with other people is: when one person is there in the room with Dad and his dementia doctor, the person sitting 10 states away can’t second guess them. Unless it’s just something wildly egregious, but you know, at some point, you have to let go. Five different people couldn’t be controlling every little bit and piece of this. But you also can’t throw it all on one person. And that’s why we did a lot of divvying up of things, to make sure no one felt put upon.

Lissy: And how did you guys do that? How much of it was just natural, and how much of it was intentionally sitting down and figuring out who’s doing what?

Susan: Well, one of the siblings said, not it. So she took herself out of it. Your dad and I were happy to be involved in helping with some of the legal stuff that was going on, and being able to get things in place. Your aunt Judy and uncle Charley stepped up with taking away his car when it wasn’t safe for him to drive, and helping with appointments since they were close. Your uncle Jeff, being a doctor, was the logical person for the healthcare power of attorney, and he was happy to do it, and it came in handy. Luckily, he wasn’t overburdened by it.

But it brings up an interesting conversation from when my mom was in the coma after her event. The neurologist said - and one of your previous conversations reminded me of this - he said, let your brother be a son. Let him be a son, let him be a sibling. Don’t put him in the position of being your mom’s doctor. I’ll do that. I’m being straight with you, and I’ll do that, and I can give it to you in plain language. You know, because sometimes you look to the medical person just for translation. But it was in that hard decision-making, terminating the machines part of it, and it was a really good thing for the doctor to say. And the person who needed to hear it most was my dad. And he did, I think.

So back to later on, your uncle Tommy took on the other piece of it with financial power of attorney. He had the personality for it. And he was willing to take it on, but he also is the youngest. He is 15 years younger than my oldest sister. And so, I think he had energy for it.

There was a mountain of paperwork to do for my dad’s stuff. It was crazy. And there’s a provision, where sometimes the person doing that work can be paid for their time. And I advocated strongly that he needs to be paid. It wasn’t a large sum of money, but he was putting in a lot of time. He was going down to Platteville, and he was yelling at bankers who let my dad give money to these ladies, and I mean, it was kind of fun, in a weird way, to watch. And he needed to be compensated, not just for his gas but for his time, too, because somebody had to do it. And he was perfect for it.

Lissy: What you’re saying totally makes sense, where you play to what people are capable of, willing to take on, and what suits their skill set. And it’s kind of a dream team scenario that you were able to check all these boxes.

Susan: Yeah.

Lissy: And then I think that for so many people, now more commonly, there’s just two people. Maybe there are two siblings, maybe three, but also maybe it’s just one person. So then thinking about all the stuff that has to happen, it’s really overwhelming for folks, especially when it’s just, okay, is it me or you, you know?

Susan: Yeah. Although, I can guarantee you, if we keeled over tomorrow, you would not have the paperwork nightmare that your poor uncle Tommy was sorting through.

And some of it was not pretty. Some of it was heart-wrenching. Because my dad kept these little ledgers for the people he had given money to, and it was Tom looking at this thing and saying you know, I asked him to help me with my healthcare insurance, and he said no. But look, here he was, that same quarter, giving money to some woman or another.

Lissy: That’s upsetting.

Susan: It’s sad that he had to deal with it.

Lissy: Yeah. And I think that’s the reality for so many people. That it’s not this rosy relationship with the parent where you’re doing it out of the goodness and generosity of your heart, because your parent has always been so generous and good to you. So often it’s more that you need to do this because it just needs to be done.

Susan: Yep. We went into it with two generally agreed upon bullet points: do the right thing, as a member of society, as a person on the planet. And have no regrets.

When my dad was in the nursing home at King, Judy had a caregiver take her aside and say, you know, considering what kind of a situation you’ve had with this man your whole life, you’ve done an amazing job. And basically what Judy told her was, we’re just doing the right thing.

And if he had been someone I grew up so terribly close with, I maybe would have been there a lot more. But we were there enough. We were there enough, and we were taking turns. There again, the beauty of having the five of us.

Lissy: Yeah. Feeling like you can support him and be there for him, but also within the limits that feel good for taking care of yourself, given what the relationship could feel like at times.

Processing in Therapy, and Other Things that Helped

Susan: Wheeling back to my mom and the things I wish I had done more for you and Mal. I didn’t have therapy until after my dad died. And that is a bit of a regret, that I didn’t carve out the time for it when my mom died. And the funny thing was, my therapy after my dad died became a lot about my mom, and my grandma. And part of it was, because my dad had kept so much of the stuff. And then as we’re going through it, we’re going through my mom’s life, my grandma’s, and what took me in was the idea of these people saying, oh, I’m so very sorry that your dad is gone. It’s gonna be a hard Christmas. And I was feeling like, it’s not, not for that reason, anyway. And then you feel kind of shitty, that society is saying I should be feeling this, and I’m not. And so, it was really good to go to therapy, at that point.

And it was easy to go to therapy after my dad died because I had a friend from book club who was a social worker, and she said, oh, I know somebody who’d be great for you, it would be a good fit. It was just easy, where before, I didn’t have that kind of relationship. Not that it couldn’t have been found. There was plenty of therapists to be found, but I just didn’t carve it out.

Lissy: Yeah. And I think our culture is much more encouraging of therapy now. It’s easier to have that be front of mind, because it’s in the conversation, you know?

I’m wondering if being just about Grammy’s age when she died brings up anything for you? Does that feel significant, or not really?

Susan: Oh, very much. Very much. And I’ve had that conversation with my siblings, because I’m the fourth one. And we all have had those thoughts, for sure. I think of all the things that I was sad that she missed, with you girls. And it can make me feel a little panicky.

Part of it, and this is also why I wish I’d had therapy, is that for a long time afterwards, I would think about how there I was, having iced tea with Amy, talking about what’s the next fundraiser at Elementary school, or whatever. And my mom was having this awful event 3 hours away.

For a long time after that, I would catch myself thinking I wonder if there’s anything terrible happening right now that I don’t know about. Isn’t that an awful thing? I mean, why didn’t I get therapy about that? So it kind of ties in with the feeling of, okay, now I’m her age.

And so I try to take good care of myself. And it’s not that she was leading a bad life, it’s just that she was in charge of my grandma, and my grandpa’s two sisters, her aunts. She had all this stuff going on. Plus, she had a pretty active social life, which is grand. But I sometimes worry about how much her own health kind of slipped through the cracks.

Lissy: And it makes you want to make sure you’re prioritizing your health and doing what you can to care for yourself. That makes sense. I think what I feel is that you are very present in your grandkids’ lives, and soaking up the time with them.

I’m wondering what you found to be most helpful, throughout that process. Communication with your sibs. Therapy, eventually. The pediatrician guiding you around the stuff with Mal and I. Was there anything else that was helpful?

Susan: I’ve been lucky enough to have good friends. We’ve had friends who weren’t afraid to have a dialogue about it. I guess I feel lucky that way. So that was helpful. And the neighbors - I mean, when we were gone they watched the dog, and cut the grass. There were people doing things that were really nice, taking some of the edges off.

You had a teacher who was very sensitive to what you were going through, and very kind, and your soccer coach was a great guy, and very sweet and sensitive to what was going on. We were lucky to have people like that, or to have chosen people like that.

And now, I mean, there’s still stuff. It never truly goes away. And it all ramped up quite a bit around the time when Rachel died [my awesome cousin who died from cancer. Maybe more on this another time]. And you know, my grandma and my mom were very open about their grief, when my mom’s brother died in the war, my mom was only 14 years old. It wasn’t a never-spoken topic. And I think that helps.

Lissy: Yeah, that’s huge.

Susan: And then for now, when it shows up, Anderson Cooper has a really nice podcast that I listen to where he talks with people from all walks of life. And so you can find things that are good. And Dan Harris has 10% Happier, where he shares things from Buddhism that help with anxiety. There are a lot of things out there.

It really helped me a lot that your dad was almost as sad as I was when Grammy died. That’s why I sent you that picture from our wedding album, where my mom’s in tears. She was so happy! She just kept saying sorry to be crying, but I’m just so happy! And, I mean, she was sad that we were going to move all the way to southern Indiana, but she was so happy for me, and so happy to have Andy in the family.

Lissy: That’s so special. Thanks for being willing to talk to me about this, Ma. I feel like this is going to be a little bit of a different one, because it’s so personal.

TL;DR: Biggest Takeaways and Reflections for Caregivers

• Supporting kids who are grieving: grief can show up in so many ways for kids, just like adults. Support you kid by modeling and normalizing through your own grieving process. Seek out resources and support if you are worried about how your kid is processing their grief. Judi’s House is a great place to start.

• Continuing bonds: Find ways to continue to feel connected to your loved one who died, and support your kids in finding traditions that will help keep their memory alive. Know that some anniversaries may feel significant, and others may not.

• Caregiving in a strained relationship: it can feel complicated and overwhelming to navigate boundaries and your emotions when you are caring for a loved one with whom you have a complicated relationship. Establishing ground rules and values to stay tethered to can help. For Sue and her siblings, it was: “do the right thing, as a member of society, as a person on the planet. And have no regrets.”

• Explore available resources: therapy to process complicated emotions and process your grief, visit Sandwich Support Co’s Resources Page to explore the caregiving load, listen to Dan Harris’s podcast or Anderson Cooper’s podcast to process grief.

• Say YES to support: a neighbor’s offer to mow the lawn, friends who truly mean it when they say “how are you doing?”, a supportive teacher or coach, a helpful doctor. It all adds up, and helps you feel part of a community during a time when you need one most.

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  If you are interested in 1:1 coaching and resources to help you feel confident in how to navigate your time in the sandwich generation, please reach out to me through my coaching website, Sandwich Support Co, at the link below.

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1. Positive visualization: Before you commit to any plans, visualize time spent with your family feeling positive and joyful. Where are you? What are you doing?

2. Create non-negotiable self-care routines: What daily habits help you feel grounded and ready to take on the day? Implement these routines during your extended family time.

3. Quality over quantity: 3 hours of connected, positive time with your family is healthier than 2 full days spent snapping at one other. Plan your time together intentionally.

4. Be the expert on your nuclear family’s needs: Vocalize and prioritize the routines crucial to your family functioning, such as bedtime, wind-down rituals, and timing of meals.

5. Hold your boundaries: A family member’s reaction to your boundary setting doesn’t mean you need to change it. Validate the feeling without sacrificing your boundaries.

6. Notice joy: Be on the lookout for moments of joy. When you notice these moments, lean into it. After all, this is what it’s all about!

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Multiple Diagnoses and Cross Country Moves

Lissy: I’m curious to know how you started to realize, Oh, I am a part of the sandwich generation now.

Hope: When my kids were 4 and 2, maybe not even, one of our parents had a stroke, and then through the process of diagnosing the stroke, there was found to be brain tumors. And they were benign, but they had to be removed because it was what was causing the stroke.

There had been other smaller things before that point. But I think it was at that point when medical power of attorney had to be filled out, and financial power of attorney, those safeguards. And then one set of parents moved out to us willingly across the country, and then one set of parents had to be moved out here to be closer, because there kept being so many health issues.

So the process of moving two sets of grandparents across the country with small children really solidified that spot in the sandwich generation. One set of grandparents packed up their own house, and for the other set of grandparents, the house was just too big for them to pack it up by themselves.

Lissy: What did it look like before those moves took place? Was it something where you were trying to support from afar, and it just wasn’t working?

Hope: In 2018, I was pregnant with our third. One grandparent was diagnosed with a form of cancer, caught very early on during my pregnancy. And then another grandparent was diagnosed with dementia during my pregnancy.

Before that point, thankfully, I was a stay-at-home mom, which meant that when things happened, I had a buffer to drop things and take the kids and go across the country when I needed to. But the delay of getting there was too big of a gap for it to be continually feasible with multiple children.

Lissy: Yeah. I mean, I think even the idea of dropping everything and going to support them with your kids, and being pregnant, just really speaks to the level of stress and chaos that you can find yourself in. Even just the premise of doing that is so stressful.

Hope: Yeah, it was very stressful for me. I remember one time there was a surgery, and the kids were little. We only had two kids at that point. And I said, we’re going to stay home during the surgery. And once everyone’s done with the surgery, we’ll come visit during recovery. And they replied, no, I want you in the waiting room.

And I was potty training one kid at the time. And they said, it will be comic relief, it will be a distraction, I need you guys there, so I’m not sitting waiting for hours. And, I mean, it was chaotic and stressful, potty training in that hospital waiting room, but it was what that grandparent needed, to have the love and the chaos while we waited for hours.

The Same Task in Reverse Directions

Lissy: Yeah. And I’m wondering, once everybody was geographically closer, I imagine there would be some relief that comes from that, but then also it opens this door to a whole new set of things that you become potentially available or needed for? And I’m wondering how you manage that.

Hope: Yeah. I mean, in so many ways, raising kids and caring for aging parents is the same task in reverse directions. Before we were at this stage where we’re at now, when we were raising our kids and they were smaller, it was always, don’t do anything for them that they can do for themselves. And even if it takes 5 minutes to put their shoes on. Let them have the ownership of putting their shoes on, right?

And I think it’s this line holding dignity for them, when you are caring for aging parents where you have loving relationships. That line of holding dignity for them, and not stepping in and doing things for them that they can do for themselves.

But also watching closely enough to know when they no longer can do that task, right? Whether it be taking away the driving, or going to a doctor’s appointment so you get the clear information. But waiting till that point before stepping in.

Lissy: Yeah, and I think sometimes there can be the impulse to try and get ahead of it, or prevent things, but I think to your point about bringing dignity into the conversation, it’s maybe that something will be missed in a medical appointment. And then that’s how you know. And that it is worth having to deal with the cleanup of it, to let your parent have that independence and that freedom until it’s really been proven that they need more support.

Hope: Yeah, and I also think, my kids are watching us, and if this is done well, my kids will eventually take care of my husband and I. And I think, what would I want? If the roles were reversed, when would I want my kids to step in for me? When would I want them to let me be?

Lissy: I think that’s such a beautiful way of looking at it. And I think it brings a cultural issue into the room, in that we don’t want to talk about aging, we don’t want to talk about dying. There’s this attitude of, if I don’t talk about it, it’s not gonna happen to me, you know? And if we distance ourselves, and be so far away from it, then we don’t need to think about our own mortality. But by bringing it into the room, it helps you be more compassionate and thoughtful in this present moment.

Hope: Yeah. I’m in my 40s now, and there’s so many messages of, stay young, get the anti-aging cream. I don’t want to fear old age, and I don’t want my kids to fear old age.

It’s still a treasure that people get to live so long to see their grandkids, and be at the sporting events and the band concerts. It’s not something to avoid, but also it’s not easy. Trying to hold the beauty of it, and the terribleness.

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The Reality of the Grandparent-Grandchild Relationship

Lissy: How old are your kids now?

Hope: My kids now are 14, 12, and 7.

Lissy: Okay. What is their relationship like with their grandparents?

Hope: Last week, I took one of the grandparents out for lunch, and we finished lunch, and I got up really fast, with 40-year-old knees, to go leave. And I left the restaurant pretty quick, and one of my kids was like, you left too fast. You can’t move that fast, they don’t move that fast, you have to go back. And, I went back, and my oldest was standing next to his grandparent, acting like his arm was just out, but he was waiting because he knew his grandparent would need a hand to stand up from the chair.

So, it’s not the normal grandparent-grandkid relationship, where they’re making cookies and building gingerbread houses. But, they know they’re loved, and they will advocate for their grandparents. They will tell off bus drivers, if bus drivers don’t park close enough to the curb for a wheelchair to get out on the sidewalk. They are loved, and they are willing to protect, but it’s not the same as the movies make it seem.

Lissy: Yeah. What I’m hearing in those examples, which I love so much, is that there’s this awareness and thoughtfulness around how different people live, and what different people’s needs are.

And I think that’s such an awesome thing to be teaching your kid. Talking about aging, but then also just talking about people in general. I think that kind of thoughtfulness and awareness transcends the aging process, and helps them just be better citizens in the world.

Hope: Yeah, and all the grandparents are excited when the grandkids get there! I wonder what they will take away, as they grow older. For my youngest, she was born after the dementia diagnosis, after the cancer diagnosis, so she has different memories than my bigger kids do. Their memories will be different than the kids who built the gingerbread houses.

Lissy: Yeah, and I think everybody enters this phase with some sort of preconceived notion around what it “should” look like, and I think that’s so rare, for it to actually look like the way it’s portrayed in the movies.

Hope: Yeah. I think my kids had that, though, before all the diagnoses. My big kids did.

Lissy: And so now you’re helping them hold the disappointment that this relationship is going to be different, helping them move through that to then be able to be open to what it will be, what the reality of it actually is, and where those moments of joy are, whatever they look like.

What Helps: Therapy, a Refreshing TV Show, and Friendships

Lissy: I’m wondering if you could speak to what you have found to be the most helpful? Either resources, or support, or strategies you used?

Hope: We started marriage therapy to navigate this, because there’s more emotion tied to my set of parents for me, and more emotion tied to his set of parents for my husband.

I wish we would have gone earlier, setting expectations and, not rules, but guidelines. If we say yes to this thing for this set of parents, it doesn’t mean we have to say yes to the same thing for this set of parents. Because there are different health concerns, there are different mobility issues, there are different driving issues, and so, saying yes to one set and no to another set doesn’t define love, right?

And sitting down and being able to set the foundation of: we are in this together in our marriage for the long haul, and taking care of all four parents. And that the love for each parent will look the same, but the way that it’s expressed will look different, because of different needs, right?

Lissy: Absolutely. I think that totally makes sense. Yes, they are four parents aging. But each is their own person, with their own set of personality traits and needs and, of course, it’s going to feel different.

Hearing you describe this, there are so many opportunities for it to feel like it’s competing resources, because there’s only so much time in your day or energy in your tank. And so being able to come back to: in our partnership, we are in this together, and we understand the nuances of it. That feels so crucial.

Hope: Yeah, I mean, you’re not told that, ever, that when you fall in love, you may have to bathe an aging parent.

Lissy: Yeah. And within your support system, who is willing to do what, with the needs that you have for each parent. What feels sustainable and reasonable. Being able to understand that everybody has a different set of expectations, or limits around that.

Hope: Yeah, and capabilities! My husband already has a medical degree. And so therefore, then, there’s things he should manage, because he already has the skills, where I can do other things, like calling ADA disability line when there’s a problem with public sidewalks or things like that, and there’s other things that he’s good at that I should not step into, such as changing bandages. You know, knowing what our strengths are, and not being offended when we don’t have the same strengths.

Lissy: Yeah. And that it’s, in fact, better that you don’t have the same strengths, because it allows you to kind of spread your talents across a wider range of needs, because there’s so much that needs to be done.

Hope: Yeah.

Lissy: I’m wondering if there are other things that were really helpful for you, or that you’re finding helpful now.

Hope: Okay, this is going to be unexpected. Ted Danson has a show on Netflix called A Man on the Inside.

Lissy: Yes, I love that show.

Hope: He goes into a senior living home, and you see all the older people’s dynamics, displayed, and there’s a daughter telling a parent, you need to find a hobby, I think that was really helpful. I mean, even though it’s a comedy, my husband and I are crying as we’re watching it. In so many ways, they put the experience out there without giving it a handbook.

Lissy: Totally. I’m making my resources page for my coaching program, and that is on it, because I think it’s such a beautiful portrayal of grief and love, and the struggles of his daughter navigating feeling like she is failing as a parent, and then she’s struggling with her dad, and it’s like yes, that is how it feels sometimes.

Hope: And also helpful are intergenerational friendships - I have people who are younger than me who I’m friends with, who aren’t yet in this stage. So they can be a sounding board. Where the people who are my age are also in the stage I’m in, and, they can say, oh my gosh, yes, that also happened this week! But, the people who are not yet there, it can be a little bit of a break from the reality, I think.

Lissy: Yeah, and I think having those different types of supports are really helpful, normalizing with the people who are also going through it. But then also to have somebody say like, WHAT? Because sometimes yeah, it is ridiculous. You’re right, that is ridiculous that that’s what happened, you know? I think there’s a function for both.

Hope: Yeah, one set will be, oh yeah, no, that’s on brand, and another set is like, what are you talking about?

Not Enough Hours in the Day

Lissy: And then the flip side of that question: are there things that you desperately needed and you couldn’t find? Or resources that you wish were available to you?

Hope: I think there’s just a lack of time and finding the resources for a lot of things, right? Juggling the extracurriculars, juggling schools, juggling parent-teacher conferences, and kids’ medical appointments, and then adding in the other stuff with parents, and jobs, and then sitting down and actually finding the resources. I said to someone, maybe we should join a support group, but I also don’t know where we would fit that time into the schedule.

I think Hilarity for Charity, Seth Rogen with his wife, I think they’re doing more stuff to try to make the conversation of caregiving more mainstream. I don’t know if that’s bringing more awareness, or if my algorithm’s just feeding me more things about that type of support.

Lissy: Yeah. I think that speaks to the ongoing struggle, which is, yeah, I would like more support, but where do I find the time to put it in the schedule? It’s really hard to even know how to prioritize that sometimes.

A Marathon, Movement-Oriented Mindset

Lissy: I’m wondering, within all the demands on your time, what are the things that you do for yourself to help maintain your sanity and take care of yourself?

Hope: Well, I have always been a writer, and been documenting all of it as a way to process things. A space to put the grief and the joy. And so, writing has been really helpful for me. [Subscribe to Hope’s Substack for stories from the sandwich generation!]

And our kids are old enough now that if a night is calm, or we have an hour and a half, we’re like oh wait, hey! They’re watching a movie, quick, let’s go grab a bite to eat down the road. They’re now old enough that we can leave the oldest two in charge and grab the spontaneous date nights, where when they were younger, it was a whole ordeal to plan it out. But I think we’ve always made it a priority to do date nights, even in the chaos of it.

Right now, in this season with our parents, everyone is stable. There hasn’t been a crisis in, oh, several months? It’s just the normal stage, whereas when it’s a crisis then date nights get set to the side. And knowing that that’s a season, and giving space for that.

Lissy: Maintaining that everything is temporary, and making sure that when you’re in a stable period, that you weave that time for connection back into your routine.

Hope: Yeah, because I think this is going to be a marathon. We have the privilege that all four parents are still alive. We’re 10 years in at this point. And if the cards fall in our favor, it will continue for many more years. So, holding each season with grace and seeing the goodness in each season.

Lissy: Yeah. I think that’s an important mindset, going back to how you think about aging. It’s ultimately these opportunities for connection, for longer. And so, maintaining what you need to do to care for yourself, to be able to show up and be open to those moments, and not just be so stressed about the logistics of everything. Creating space for the continued connection and those moments of joy.

I’m wondering if there’s anything else that you think would be worth talking about today. Anything that we missed?

Hope: I’m part of this writing group where I’m the youngest by probably 20 years. And one of the people in the group said, there is always a shift where the parent changes roles in your life. And I think we talk so much about launching our kids out. And I think it kind of comes as a blindside when the role changes with your parents. There is so much talk of building a strong human, launching them out into the world, and creating a kind person.

And there’s so little talk of the change that happens with the relationship with your parents, that there’s two sets of changes. You knew it was going to change when you went to college or when you moved out, but I don’t think we see it coming, this next one, as our parents change.

I want my kids to know about this change of a relationship. I don’t want them blindsided by it. And I want other people to know that this is normal, this is a normal growth spurt. No matter what story your parents walk as they head toward the end of their life, every single person hits this. Whether it’s fast, or years, your relationship changes, and the role you play changes, and that’s normal and good. And hard.

Lissy: I love that, normalizing that it happens. That the relationship kind of merges back together. It throws on its head the idea of “progress” towards this ultimate independence. Because no, we come full circle together in this way.

Hope: Yeah. I’m working on a piece in my head about tetherball. Did you ever play that game, where the ball keeps coming back to you? You keep sending it, and it just keeps coming back to you. And I think when you get the privilege of being in a healthy, loving family, it’s like tetherball.

You keep sending your loved one off, and they’re just going to keep coming back to you, right? Whether they go on their adventures for 5 years, and then they come back. Or they’re gone for the school day, and then they come back. Or you have to move them back across the country, and that’s them coming back.

Lissy: I like that metaphor. I think it speaks to the fact that there’s always movement within family relationships. That if we are able to continue to show up with love for each other, then we can figure out how, within that movement, everybody fits together and we can take care of each other. I think that’s really beautiful.

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TL;DR: Biggest Takeaways and Reflections for Caregivers

• Lean on friends for support: Talk honestly with friends who are also in the sandwich generation (for empathy and camaraderie), and those who aren’t yet in it (for validation that some of this sh*t is truly wild and out of the ordinary)

• Center dignity on both sides of the sandwich: dignity in parenting and in supporting your aging parent means creating space for independence and self-sufficiency as much as possible, even if it means being less proactive at times.

• Embrace the beauty and the mess that comes with this phase: As Hope shares “it’s still a treasure that people get to live so long to see their grandkids, and be at the sporting events and the band concerts. It’s not something to avoid, but also it’s not easy. Trying to hold the beauty of it, and the terribleness.”

• Use the tetherball metaphor: instead of thinking about full independence as being the ultimate goal within a family, notice how levels of independence and interdependence fluctuate throughout the life cycle. This is a normal growth spurt within your family system.

• Resources that Hope recommends:

  • Couples therapy

  • Hilarity for Charity

  • A Man on the Inside

• Follow Hope’s Substack, Nearly Normal, a space to feel supported and seen through Hope’s writing on being in the sandwich generation. Think of it as a 10 minute support group, brought to you through storytelling.

Know someone who might resonate with what you just read? Give them a virtual hug by sharing this interview.

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Are you interested in being interviewed for Stress & Love? I’m looking to interview individuals who have gone through the sandwich generation, as well as those who are in it as we speak. To clarify: you don’t need to be a primary caregiver to be considered part of the sandwich generation. If you are supporting your parent emotionally, logistically, financially, or otherwise, and you are also navigating raising your own kids, then I would love to hear from you!

And lastly, if you are interested in 1:1 coaching and resources, please reach out to me through my coaching website, Sandwich Support Co, at the link below.

Sandwich Support Co

The best time to use this tool is when you are proactively thinking about how you can support your parent, while they are still living independently and are relatively healthy. By asking your parent questions about their experience of supporting their own aging parent, you can explore how their past experience as a caregiver impacts their decision-making within their own aging process.

Asking thoughtful questions to understand their experience helps you establish that you are a team in approaching their aging process. Together, you can identify their vision and goals for how they want their lives to look as they age, and explore how you can support them in the process.

Crucial Note: How these questions are asked is as important as the questions themselves. Ask questions with curiosity, openness, and a lack of judgement. This is an opportunity for you to connect and collaborate with your parents.

Prefer a PDF? Click Here.

10 Questions to Ask Your Parents About Aging:

1. When did you first see signs of your parents aging?

2. Did your parents talk to you about what they wanted their lives to look like, if they lost their independence?

3. What was your role in your parents’ care and healthcare decision-making?

4. How did you feel about this role?

5. Are there things that you wish had been handled differently?

6. How does all of this impact how you think about your own aging?

7. Are there things you want to avoid? Or things you want to make sure you do?

8. Is there something you are particularly worried about?

9. What are your goals for this stage of life?

10. How can I support you in achieving them?

Post-conversation Reflection:

How did this conversation feel? What did you learn about your parents that you weren’t aware of before? How does this information inform how you show up for your parents moving forward? If this conversation was awkward, uncomfortable, or felt totally foreign to you, that’s okay! Normalization only comes from practice and repetition.

Could this be a great gift for a friend who you know is in the sandwich generation? I’d say so!

Or perhaps it’s a stocking stuffer for your sister, who you know will be alongside you as you navigate this, but who has a hard time with conflict and direct communication.

Before you buy those socks that are on mega sale for Black Friday - check your sock drawer. I bet you already have socks in there. Buy this for yourself instead!

This is a gift for future you. And present you. Because we all know how good it feels to have a plan, and not be flailing around on your own. Stop flailing! You look silly!

TL;DR (really? This was not that long, you guys): I’m enabling paid subscriptions as a way to give you tangible resources and tools to use in your sandwich generation journey.

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Maddy’s journey in the Sandwich Generation begins when she gave birth to her first son at the same time that her dad, Brad, got diagnosed with stage 4 kidney cancer. She shares the heaviness of translating complex medical information for her family, the challenges of balancing caregiving with new motherhood during the peak of COVID, and the profound way that parenting our children helps us experience our own grief and sadness.

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A Diagnosis and the Start of a Parallel Journey

Lissy: So can you start by just sharing about your family? Your kids, your siblings.

Maddy: I’m married to Shane. We have 2 kids, who are almost 6 and almost 3 years old. We have two dogs. I grew up with two sisters, and I’m the middle sister. My older sister lives in England and my younger sister lives in Bend, Oregon, which is also where I live. My mom lives in Milwaukee, Wisconsin. My father, Brad, passed away in March of this year.

Lissy: Can you share about when Brad was first diagnosed?

Maddy: So, my parents were here in Bend, because I was due to give birth to my first son. We ended up being in the hospital at the same time. My dad thought he had a UTI, he was just having some health stuff, and so they went to urgent care. Urgent care said you need to go to the hospital. And I was in labor and had no idea he was 2 floors up being told he had cancer. It was a very strange life cycle moment. This is January 2020.

At the time, he didn’t tell us anything, no one knew. He didn’t want to ruin the whole new baby moment. At the time, when I didn’t know yet, I was pissed because he wasn’t being very lovey toward his first grandchild, and he’s a very lovey guy. And so I was like, what the hell, Dad? Act like you are happy about this. And I had some guilt around this afterwards, once he told us.

So they go home, see the doctor, and he was diagnosed with stage 4 kidney cancer. It had already moved from his kidneys to some lymph nodes and glands, and he was scheduled for a surgery. This is also when COVID started. So while getting diagnosed at stage 4 sucks, if he would have been diagnosed a couple months later, his surgery probably would have been pushed off, and he probably would have died within the year. The timing is crappy, but also kind of amazing. So he had surgery to remove everything that was affected. We hoped that would be the end of it, and unfortunately it wasn’t.

If you looked up the stats with when he was diagnosed, it says 5 years is the longest you can live. And, you know, you always just hope that that’s wrong. He made it 5 years and 2 months. If you’re being pragmatic about it, it all went the way that they told us it would.

A Perpetual State of Uncertainty

Maddy: With his treatment, it was never: go do a round of chemo, be done, do a scan, see if there’s anything. He was constantly on something. He went in for infusions for Immunotherapy, and his chemo was a pill. He did a cocktail of various things, and it was always like, okay, try this, and then the scan showed this isn’t working so we’re gonna try something else.

But yeah, we always knew he wasn’t gonna be a bell ringer, where the cancer’s gone. And we knew that it would be what he died from, we just hoped it would be when he was 80, not 70. And you know, he never lost his hair, he never lost his appetite, he wasn’t miserable after treatment, so it wasn’t staring you in the face that he had cancer the whole time.

Lissy: Yeah. But also, you never got that moment of ringing the bell, and having a moment to exhale, even temporarily.

Maddy: No, it was constantly, Oh, that scan was not awesome, but it wasn’t horrible. And unfortunately, he had a rare cancer, on top of just having cancer. It was rare, so there weren’t many stats. I’m kind of an information person, so I wanted to be able to read studies on the treatments, and there just wasn’t much. It was all experimental from day one, so that was hard for us to wrap our heads around, because we couldn’t see a runway. I mean, even at the end, the last week he was alive, we were like is he dying? Is this it? And they were like, yeah, it might be, but he could also turn around, so... It was kind of a mindfuck, for lack of a better word, the entire time.

Lissy: Right. I think when the information is clear, you can do some emotional processing to help yourself through what’s happening, but then when there is so little information, you’re in this perpetual state of not wanting to give up on your dad, but also wondering what the fuck is happening right now. And how are you supposed to know how to orient yourself within this information?

Maddy: Right, yeah. My mom has struggled with that a bit, because she’s like, why didn’t I just quit my job and we could have traveled knowing we only had 5 years left, you know, or do something like that. But it’s like, by saying that, you’re also saying you only have 5 years left, and you’re in this mindset of death at all times, and that’s not a way to live either, in my opinion.

I think we all struggled with that since he passed. Did we do enough? You know, COVID was raging for the first 2-3 years that he had this, and so we didn’t visit as much, because we had a newborn baby, and then later I was pregnant. And we just didn’t know enough about COVID. And he was immunocompromised from his treatment, so we had to do the 10-day quarantine and all that. We feel robbed of time on that end, we feel robbed of time on this end, and at the end of the day, it’s never enough time, I guess.

Lissy: You do the best you can with the information you have at the time, and I think with where we are at now with COVID, and how the landscape has shifted, and I think it can be hard to remember and stay grounded in how chaotic and urgent and terrible it felt at the time.

Maddy: Yeah, and like you said, we’re making all these decisions with the information in front of us. We weren’t looking back, knowing what we know now. But it’s hard to remind yourself of that.

Stepping into the Caregiver Role

Lissy: What was your role during his treatment? And was this a role that was familiar to you in other ways?

Maddy: Yeah. We’re lucky that my mom is a nurse and understood 90% of what they were telling her, for normal pre-cancer stuff. She always understood what was happening, with her parents, or my dad’s parents. It was interesting to see how she kind of lost that when she was sitting next to my dad. I’m not blaming her in any way, but you could tell it was overwhelming.

Lissy: I think for your mom, she was sitting there as his wife. And then they’re speaking to her as a fellow medical professional, and it’s really hard to absorb that when you’re holding these two roles.

Maddy: Yeah. It was probably very hard for her, yeah. We don’t live in Wisconsin, so we couldn’t be at every appointment, but I stepped in where I could to take the information about the next treatment, look stuff up, and then I would send emails to the whole family of what I view as layman’s terms, because it’s very confusing. And I did that for the scans, too. I would read all the information in his MyChart, highlight what made sense, send everyone little bullet points.

You have to advocate for yourself a lot in the health space, and if you don’t have someone who knows how to read that stuff or understand the research jargon, it can be very intimidating. So that was my role a lot of the time. It was an expected role because of my professional background. But sometimes it would have been nice to just be the one being like, yeah, sure, sounds good.

Lissy: To get to just show up and be the daughter.

Maddy: Yeah, and I think what’s hard about it is I didn’t want to be in charge of the decisions, you know? I wanted my dad to feel like he could be. But he didn’t understand them, and so it was a hard place to be, because I guess I was helping determine the treatment plan. And my sisters are making this decision based on what I told them, so it felt a little heavy at times, and like you said, sometimes I just wanted to show up and be the daughter who didn’t need to do that.

Positivity, Frustration, and Unfinished Business

Lissy: I’m curious about what your conversations with your dad were like. Were you talking about how he was feeling as he was going through treatment, both physically and emotionally?

Maddy: Yeah, we talked quite a bit about it. He’s an emotional guy when it comes to spreading the love, right? Brad loved everyone, loved being the center of attention, that kind of stuff. But we realized in the end, more toward the end times, that he might have been protecting us a little bit from how he was feeling.

His biggest side effect was GI stuff, but then it could be made better by eating healthy, which is something he never did. And so he’d have 2 hot dogs and 4 beers, and then feel like shit, and we’re like, uh-huh! So, our conversations, unfortunately, were often us feeling frustrated that he still wanted to have his cocktail, and he still wanted to have his big burger, and it was frustrating, because you’re like yes, it’s your choice, but, what is the impact of doing that. And I think his mindset was, if I’m gonna enjoy my time, I want to enjoy it my way. And you know, you have to respect that, right? It’s his life, it’s his choice.

Emotionally, I think that once in a while, he’d get really down. Usually it was after a scan that was not promising. On the eve of a scan, he was always like maybe this’ll be the one where they see nothing. And that was hard, because I knew that wasn’t going to happen, but he always was hopeful. Overall, it was amazing how positive he was through all of it. But understandably, he had low points, for sure.

Maddy: Our family’s really open with one another, probably too open, and maybe a lack of boundaries, for sure. But because of that, we talked a lot about how he was feeling. Especially in the end, in the last couple of visits home, we each took time with him. We were trying to say you’ve been such a wonderful father, make sure he knew.

And his big thing was, who’s gonna take care of who? Like, assigning roles, you know? He’s like, you need to be in charge of this, and make sure so-and-so’s okay, and you know, help mom with these things, and we’re like, yeah, this isn’t the moment for that. You don’t need to list out your responsibilities and make sure that hat’s put on someone, you know? So I think that was just more him, probably struggling emotionally at the end.

Lissy: Yeah, and to me, that so speaks to him wanting to get verbal confirmation that you guys will be okay.

Maddy: Yeah. He definitely wanted us to just be like, we’re gonna be fine without you, but that’s not how it felt, you know? There’s no way to have that conversation. It’s not Hollywood, it’s not going to be this beautiful closure. It’s always going to just be shitty.

There’s certain things we all still wish we could have said or shared, and there are things that we didn’t get from him that are frustrating too. My sister’s not been married yet. And she and my dad have always been the closest, similar processing and how they think, they’re very similar. And I was, in that moment, thinking ahead to if she does get married, or those big moments that she won’t have him there for. I asked if he could just write a little letter, something I can give her. And he was pretty weak at the end, so maybe send me a voice note, send me a text, something I can give her. And he didn’t do it, he never did it. And that pisses me off, it pisses her off. And then, you kind of find yourself saying why am I mad at my dead dad? He’s dead. Don’t be mad, that’s not fair. But the emotion’s still there, you know?

Lissy: Yeah. I think it’s okay to feel mad about the things that you wish could have been different, you know? I think so often it’s like, oh, I can’t be mad at him, he’s gone, but that emotion speaks to the continuing relationship that you have with somebody after they die, where you can still feel those emotions about things, because it’s part of missing them, because you wish they had done that, you know, and I think it’s like important to let yourself have those moments when they show up.

Maddy: Yeah, I think it reminded me of the feelings of, as you become an adult yourself, realizing that your parents were parents for the first time. Also, that they’re humans, that they have faults, that they’re not these, perfect pedestal people. You see them as these humans for the first time. And it’s hard, because you’re like, no, you’re supposed to have all the answers, and have made all the right decisions, and I’m supposed to just be able to follow along like a little duckling. And so it’s kind of the same feeling, where I don’t want to be mad at him, because it was his life and his decisions. It’s a weird amalgamation of all these emotions at once, and trying to tell yourself it’s okay to feel all of them, when some of them, honestly, just feel like you shouldn’t.

Lissy: Yeah, totally. And I think to your point about realizing your parent is parenting for the first time, it’s also that you are going through this as a family for the first time, having somebody get sick and die within your family. There’s no path that you can follow, you’re figuring it out as you go, and it’s super messy, and there are always going to be the things where you’re like, oh, we really fucked that one up, you know?

Maddy: It’s interesting, there are some moments that I think we’re all disappointed in how we handled it, or what we did, or whatever. Just not going home more, you know, stuff like that. And then there’s other things where I’m so proud of all of us in different ways. It’s very confusing.

Timelines and Mindsets

Lissy: I’m curious, are there things from your experience supporting Brad that you will carry with you into how you manage future situations you find yourself in? Or things that you will definitely want to do differently?

Maddy: Definitely. One of my first thoughts, and again, something I had guilt thinking about this, but one of my thoughts after he died was, oh my god, we have to do this 3 more times, because it was so heartbreaking, and it was so heavy. And you start thinking about everyone else you love, and it’s too much, you know?

There are things, especially with the boys, trying to guide them through it was hard. Trying to help them go through it in a way that felt healthy, but also not shielding them from it, because you can’t. And so there was a lot that I think I learned, certain ways to talk about it with kids.

And there are definitely things I would do differently with the other parents. If any of them get cancer, I will take the timeline more seriously. Not that we were ignoring it, but we definitely were just like, he’s gonna be fine, you know? Because that’s how you protect yourself, because you can’t live for 5 years thinking oh, my dad’s dying. That’s exhausting.

But I do think being more realistic with each other, maybe not with the person who is sick, because I think sometimes that’s not fair to put that burden on the person, and they might not want to talk about it in that way. You know, the patient themselves, I think it’s their choice, but I do think everyone else should talk about it more, because we were trying to just rally around his positivity. And I think maybe being more realistic about it, maybe we would have done nothing different, but it feels like we would have been more intentional about time spent together.

So yes, there’s always going to be things we would have done differently, but I think just taking more seriously any real timeline. And then there’s the financial stuff, oh my gosh. I learned a lot about finances and the business of death. It’s so annoying. It’s like, this person died, you’re in your worst state ever. And the funeral director is like, okay, here’s the packages, which one do you want? My parents planned to a certain extent, but they didn’t plan everything that could have made those moments easier. My mom has gone absolutely bonkers since then on estate planning. Her shit is tight now, because she’s like, I am not making you guys do that for me.

Processing Through Parenting, Books, and the Support of Loved Ones

Lissy: While Brad was sick and then after he died, what were other things that you found to be really helpful to you?

Maddy: Yeah, I’m a stories person, and so I read a lot of books. Not self-help vibe, but books that had characters who experienced death or were going through it. That was helpful to me, to escape, but also acknowledge what I was going through.

Lissy: Do you remember any of them?

Maddy: Yeah, Lost and Found by Kathryn Schulz.

Lissy: I fucking love that book.

Maddy: Yeah, she’s a phenomenal writer. It’s about her falling in love and her dad dying, it’s her best part of her life and the worst part of her life all happening at once. It’s an amazing book.

And I feel like I’m talking about the kids a lot, but that’s the phase of life I’m in. Helping my kids through it made me talk to myself nicer about it, you know? They would cry or randomly be like, I miss Bop Bop, and I would say to them, it’s okay to miss him, and we can talk about him. Even just saying out loud when I was feeling it, you know? Showing my kids that was okay made me understand a little bit better that it was okay. I think that helped a lot.

And after Brad died, my older son asked some pretty deep questions about death, which was scary, as a parent. You don’t want to mess up in that moment. You know, it’s like when kids ask questions about sex or childbirth or whatever, you’re like, this is my moment, I gotta get it right, or they’re gonna forever be like, do you remember when I was 6 and you told me that fucked up thing?

And the Child Life Specialist at the hospital was wonderful. She came in with Magnatiles and dinosaurs, and then also encouraged things like drawing this picture of you and your grandpa, making it about what was happening, too. And she gave them these bears, they each got a bear, and my dad had one. And the whole idea was that when you hug yours, he feels it in the hospital after we leave. And so then when we not there, my mom would send photos of him with the bear. The Child Life Specialist kind of gave us permission to be really open with them about it, because I think I was so nervous about them not understanding, or it being scary, because, you know, hospitals are really intimidating and scary, and some of the stuff he had going on was maybe scary to a kid.

I think one thing we were good at is that, you know, at the end he looked sick. He had tubes and drains and all this equipment, and we still put the boys on the bed next to him and let them touch him and hug him. It wasn’t this big, scary thing. We’re gonna kiss him, we’re gonna love on him, and we’re gonna let the boys do the same.

I have a very supportive relationship with my husband and my friends, so I felt very supported. I had one friend who would just text every morning and say, I love you, today’s a new day, little things like that were so lovely. And you and Kayla coming to Wisconsin, I still could burst into tears about that. You guys just were there. You didn’t need me to be anywhere, you didn’t show up unannounced, you just were there if I needed anything. So those are the things that stick out to me when I think back on what I needed and what was provided.

I didn’t feel unsupported in any way. So, I think in terms of what would I have needed? Just more space to be allowed to just be a daughter who is sad, you know?

The Final Moments

Maddy: Shane and I didn’t want our kids there when my dad died. I didn’t think that they needed to be there, and I also wanted to be there, fully. Kids have shit timing. My son is screaming at me that he has to poop or wants a snack, and my dad’s taking his last breaths? No thank you.

Lissy: Yeah, I think it speaks to being able to control the things you can control to be able to just show up as a daughter in that moment. You can be a parent in all these other moments, and all these other ways that you’ve navigated how to support him in this. But you needed to just be able to show up and be there for your dad as his daughter and have this experience. I think that makes so much sense.

Maddy: Yeah, I mean, there were people in and out of the house all day, and so you’re in this weird situation with being a hostess, grieving, small talk. My dad loved his people, and he wanted them there, and he kept saying, tell my friends to come by, and this and that. He deteriorated pretty quickly throughout the day, so then he couldn’t talk as much, but when his friends were leaving, he gave them this wave. He hadn’t really moved for a while, and so he gave them this wave that they now cherish, and I’m so happy that they got that, because it was such a nice goodbye for his best friend.

My parents watch Wheel of Fortune and Jeopardy almost every night, we did it growing up, it’s just a thing we do. And after everyone left, and we turned on Jeopardy, because we were not just gonna sit there and watch him breathe. We all grabbed a beer, and we had literally just cracked open our beers, and Jeopardy was playing, and I look over at my dad, and I was like, Mom, I think his breathing’s slowing down. And we were just laughing, because it’s like he waited till it was Jeopardy-and-a-beer time, to be like alright, they’re fine. It ended up being really beautiful.

TL;DR: Biggest Takeaways and Reflections for Caregivers

• Roles and their limitations: If you spend time advocating for your parent, make sure you also create space to get to show up as their son or daughter.

• Grief encompasses countless emotions: It is normal to experience moments of anger and frustration towards your parent after they die, in addition to feelings of sadness and longing. Explore how you can tend to your emotional experience with the support of friends, family, a support groupo, or a therapist.

• Explore available resources: A Child Life Specialist can be an invaluable resource while your parent is in the hospital. Lost & Found is a memoir that Maddy recommends to help process grief.

• Timelines are personal: You may hold a different perspective than your parent on how to conceptualize a timeline or prognosis, if one is given. Respect your parent’s feelings on their timeline, and do your own internal processing in a way that feels right for you.

• Life is full of firsts: When you are supporting a parent through their illness and end of life, give yourself grace and patience. You are all just people going through life’s new experiences, and illness and death is one of those experiences. You are doing your best.

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Are you interested in being interviewed for Stress & Love? I’m looking to interview individuals who have gone through the sandwich generation, as well as those who are in it as we speak. To clarify: you don’t need to be a primary caregiver to be considered part of the sandwich generation. If you are supporting your parent emotionally, logistically, financially, or otherwise, and you are also navigating raising your own kids, then I would love to hear from you!

And lastly, if you are interested in 1:1 coaching and resources, please reach out to me through my coaching website, Sandwich Support Co, at the link below.

Sandwich Support Co

I’m noodling on how to incorporate more opportunities for readers to ask questions and engage in dialogue around what they are struggling with. I want to know what would be most supportive and appealing to folks. My current thought is to create a paid tier for a second post each week that includes reader Q&As, exploring themes discussed in interviews, etc.

This is also where I will share resources and guides that I have developed for my coaching program around:

• engaging in difficult conversations

• advocating and communicating effectively

• collaborating with family members

• doing internal work around aging, death and dying

• and more. so much more.

Is that something that you would be into? If so, send me a message or leave a comment!

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Numbness and Memory

Steph: This was pretty wild, going through your questions, because I’ve really avoided all of this. Not avoiding it in a conscious way, more so that I haven’t been able to access it. I would try to access it in therapy, and I just would feel nothing, or I couldn’t tap into what the feelings were. And doing this, I was able to do so quite a few times, and be back there and remembering some stuff that was pretty rough. But I think it’s good. It kind of opened a portal for me.

Lissy: That makes sense. My number one goal with this Substack is to help people feel less alone. I think that feeling of numbness around the process is so common, you know?

Steph: Yeah, I was numb then too. I don’t even know that I ever really processed it. So, we’ll see what happens here.

Lissy: Let’s see what happens. Okay, so I wanted to talk to you because your experience in the sandwich generation is notable in that your mom was diagnosed with cancer when she was so young. So you experienced what the people in the sandwich generation feel, but in a really different way than if your parent was slowly experiencing memory loss and other signs of aging. Can you set the scene around how old everybody was when she was first diagnosed?

Steph: It was 1996 when my mom was first diagnosed with lung cancer. I was 30, and my mom was 50. My kids were 7 and 3, and my little brother was just 14. And for the next 9 years we were dealing with multiple reoccurrences of the lung cancer and surgeries and COPD, and this went on until she passed when she was 59, and I was 39.

Lissy: Wow, so all of your 30s were spent helping her off and on around this.

When Roles Reverse

Lissy: Can you tell me about your relationship with your mom, and what it looked like after her diagnosis?

Steph: She was a very young mother, she was 20 when she had me, and then my sister 2 years later, and my brother 13 years after that. When I was a child, some of the boundaries she set didn’t make sense to me, and I would push back a lot. And when my brother was born, I took care of him a lot, and I loved it. But in retrospect, you know, every weekend, I’m babysitting at some point. And then as I got older, and looking back I now realize that I was in the parental role when I was young. As I became an adult, and then certainly when I got married, she leaned on me for certain things, and looked to me for the final approval of things, in many ways. They just depended on me a lot.

When I became a mom, we had that in common, and we enjoyed doing a lot of the same things together. And she was a friend, but at the same time, I kind of was always the mother figure in our relationship. And then when she was first diagnosed our relationship didn’t change that much, because she was very stoic about it. She had surgery to remove the cancer, and didn’t have chemo and radiation. So we thought that she was in the clear.

Anger, Empathy, and the Complexity of Care

Steph: When things started to get a little more complicated in our relationship was when she continued to smoke after her surgery. She really closed off then, because we couldn’t talk about it. She didn’t want to talk about it. And she was very defensive around smoking and in general about her overall health.

The cancer came back in 2001. At that time I was 35, she was 55, and my kids were 12 and 8, and that’s when she had radiation and chemo, she went through all of that. And then she still continued to smoke. And in between these different reoccurrences of cancer, she was in and out of the hospital with pneumonia and bronchitis, and everything just got worse and worse and worse.

Things became more complicated as she became more sick. It really became challenging, to the point where she was sneaking smoking. At one point, I caught her smoking right after she’d gotten out of the hospital. I had been with her in the hospital for a week. And so I was really angry, because I had just spent all of this time away from my family. Again. And she hadn’t even been home from the hospital for a day, and she was smoking again. My reaction was not very kind at that moment.

Lissy: I mean, I think it makes sense that anger would show up. You’re sacrificing time with your kids to go support her, and then for her to do something that feels like a totally counterproductive thing as soon as she’s released. I think it makes sense that it would have tapped into this feeling of how dare you? I just spent the whole week not being with my family, to support you.

You’re trying to play into these roles that are both comfortable but also puts so much responsibility on you. But then she’s responsible for her own decision-making, and you’re not approving of her choices. I could see that just creating a lot of confusion.

Steph: Yes, it was confusing. And frustrating, because I wasn’t aware of the different attachment styles, or any of that. I was just going purely fueled by emotion. And so at times it wasn’t pretty. It was really difficult to navigate, because I had so many different emotions at this time. I was really angry, I was sad, I was missing my kids, worrying about my kids. It was just that it became really complicated. And that was towards the end of her life.

Fighting for Clarity

Lissy: One thing that people note as being useful in supporting an aging parent is getting access to their parent’s patient portal, getting read up on what happens at doctor’s visits, test results, that kind of thing. But this wasn’t a thing in the 90s. With your mom’s care, you were so involved and your opinion really mattered, but did you feel you had the information you needed to even be able to know what was happening?

Steph: I can’t even imagine what a difference that would have made, for me to have been able to get up to date and comprehensive information in real time. I could have had the opportunity to talk to my peers, to talk to other professionals, get other opinions.

It was very hard to navigate because when she was in the hospital, the doctors would come in randomly for a few minutes, and I would try to get the information out of them, but I’m getting just bits and pieces. And so I would try to get things from the nurses, but really, I was making it up as I went along.

I spent most of my time figuring out what medications she was prescribed on any given day, and then making sure she was getting them. And figuring out what’s on the schedule for today, trying to find out what’s supposed to be happening. And then I would make sure it happened. Questioning things if they were not in line with what I was told, just really keeping the train on the tracks.

I wish that I had had power of attorney, since my dad wasn’t able to handle it. So that I would have been given all the tools to actually handle it, instead of having to ride in the middle, trying to help him do the right things.

Tireless, Painful Advocacy

Steph: When she went into the hospital for the last time, my dad was going to drive her, and he realized he didn’t have time, so he called 911. They took her to the hospital, and they resuscitated her in the ambulance. My dad called me from the hospital, and we thought that was it.

The whole thing was a month of her being in the hospital. She was in the ICU for maybe two weeks, and then she got stable enough to move into whatever the next level down is, but she was still getting worse, deteriorating rapidly. She was near the end of her life, and for some reason they were constantly doing bloodwork. And I finally said, what are you doing? What are you trying to figure out? And I was told that she was no longer making plasma. And that they were giving her plasma infusions.

And I talked to the doctor and said, if she’s no longer making plasma, and you don’t give her plasma infusions, does that mean she will die? Does she need these plasma infusions to survive?

And he said, yes.

And I said, then why are you giving them to her? Why are we prolonging the inevitable? I told the doctor that under no circumstances should they give her any more plasma. And I told my dad to sit with her, and under no circumstances, should he let them give her a plasma infusion. And I was going to go home, take a shower, and come back.

I came back, probably 2 hours later. And they had given her another plasma infusion. So then I really felt like I couldn’t leave, because I couldn’t count on anyone else to advocate for her in those moments.

Lissy: That is such a painful thing to have to advocate for, to ask them to just stop with the interventions that are prolonging her life. It’s such a hard thing. I think it’s amazing that you were able to make that call, and have the clarity to say stop! Because I think a lot of people would not have asked about it or realized what was happening. There are a lot of ways where it could have been drawn out for so much longer if you hadn’t been such a ferocious advocate.

Steph: Yeah. Whenever she was in the hospital, especially that last time, my main concern was to alleviate as much suffering as possible. Because we knew she wasn’t coming out of the hospital. We just didn’t know what it was going to look like.

Crucial Pillars of Support

Lissy: And during all of this, your kids are so young. You’re holding a lot. I’m wondering what support was most helpful to you during this time?

Steph: The thing that was absolutely crucial was knowing that I could count on my husband, Steve, to take care of everything that I wasn’t taking care of, so I could completely focus on what needed to happen for my mom. I could focus on being her advocate, and Steve would make sure everything was taken care of with the kids. I don’t know what I would have done, if I didn’t have that person in my life.

Because there was nobody else who could have done that. All of my friends had or were having kids. I didn’t ask for a lot of support, because my peers were all in the thick of things with parenting.

I did have my best friend, Nicole, to vent to, mostly about my challenges with my dad and the doctors. And that was wonderful, because I didn’t want to burden Steve with that. It was very helpful to have that sounding board. She just held space for me, she didn’t even have to say anything. I just needed to get it out, you know? It was really helpful.

A couple of times friends dropped off lunch for me at the hospital. They didn’t stay, they didn’t get involved, they just wanted to drop the lunch off. It was nice to have that. It would have been helpful to have had more of that, because I was not taking care of myself.

Carrying the Weight After Loss

Steph: After my mom died, my dad was not coping. He was distraught. I was constantly checking on him, inviting him over. I had to help him move out of his house, because he didn’t want to live in the house anymore. Right after she died, he started this mantra, I gotta get out of this house. She died in January, and he moved into his new townhouse in the beginning of August. I had to pack up the whole house, go through everything. He was incapable of functioning, really.

Lissy: The mantra of I gotta get out of this house reads to me as I gotta avoid these feelings. And for you, it was yet another demand on your time and energy that kept you from being able to slow down and process any of this as it’s happening.

Steph: Probably. I mean, the kids would have been 12 and 16 at this time. So much stuff is happening, Lissy!

Lissy: You have this whole other part of your life happening that is more than full enough.

Steph: So we just tried to include him in as much stuff as we could. But this went on for about two years, this really serious dependence on me. And then it slowly faded a bit. You know, his friends were reaching out to him and checking up on him. But he wasn’t letting them see his completely disheveled self. They didn’t know. He kind of put on the strong, stoic thing with them.

Lissy: But he didn’t do that with you, because he felt comfortable and safe with you. But then you were the only one who got to see it, and that’s such a burden.

Steph: It really did fall on me.

Lissy: And I think if you had been just one part of a full team supporting your mom, and you could show up and then come home, you could slowly process and tap into the anticipatory grief that happens when someone’s health is declining, reaching the end of life. And you can start to do that work as things are happening, experiencing that grief in chunks as it comes. But when you feel you need to show up for everybody else, there’s no space for that, you know?

Steph: Yeah, oh, definitely.

What Could Have Been Different

Steph: The main thing is, I would have been more compassionate. Because I was really frustrated. At the end, every day was so brutal. I was getting really frustrated, I wasn’t mean, but I wasn’t as kind as I could have been. If I could go back, I would tell myself to be more compassionate. But really, I don’t know that I could have done anything differently.

Maybe if I had other things in place. I mean, if there was an advocate who I could have trusted to advocate the way I would advocate, so I could get a break? I think that would have changed so much of the whole experience for me, and for her. And she would have felt more loved. Because I just had nothing left. I was on fumes.

If I had somebody else who I could say: I’m going to leave you, I’m gonna go to sleep. These are the things that are going on. I mean, that would have been absolutely invaluable.

Lissy: That makes sense. You had to be constantly on, as her advocate, in a way that kept you from being able to tap into just being her daughter. And it sounds really lonely, to be the one who needs to always be alert and on it, and making sure that things aren’t happening that shouldn’t be happening, and that she has what she needs, that she’s not suffering. It’s a job in itself.

Steph: Yeah. And thinking about things I wish I could have done differently, I would have gotten more support for my family. Because I was also worrying about them. So while I’m worrying about her, I’m worrying about my kids emotionally, not their needs, but their emotions. And I can’t be there for them, and I want to be there for them. If there had been people there to look after my family and make sure they were okay, that would have been really helpful as well. Because that was a whole other set of demands that I put on myself.

And then I really could have benefitted from someone just to make sure that I was eating, you know? Because I wasn’t. I mean, I was going to the cafeteria and grabbing something and running back into the room. I’m sure I went days without eating anything other than a donut. So that would have been helpful. Making sure that I’m taking care of myself.

Lissy: Right. And I think that speaks to the unique thing that happens when you’re navigating this while also taking care of young kids. Your husband is super supportive, but he’s working and he’s taking care of the kids. So if the kids had been older, then he could have regularly shown up and said Steph, you haven’t eaten today, here’s a sandwich. Or, Steph, I can stay with your mom, you go home now. But when you have these tiny kids, you don’t want to disrupt the rhythm.

Steph: Yeah, we wanted to keep things as smooth as possible for them. And especially at the end, they are both in such delicate years of high school and middle school. I was so worried about them, and how they were coping.

Looking Ahead: What Caregiving Teaches About Aging

Lissy: I’m wondering how this experience with your mom impacts the way you look at your own aging, and your own feelings specifically around end of life?

Steph: So, my biggest takeaway is: if I was terminally ill and was not able to have any quality of life, I would do everything I could to ensure that there is no question about what I want. I would have a DNR, explore options for medically assisted suicide, make sure I have a power of attorney in place. And documenting different circumstances and what I would want to have happen. So that it was not in my children’s hands.

Lissy: I think that’s such a gift to give your family, so they don’t need to shoulder the decision-making. They can just shoulder their emotional experience of it. It makes sense that that is what you’ve doubled down on. Not wanting it to be any sort of question, how you want things to go down.

Steph: I want it all to be crystal clear.

TL;DR: Biggest Takeaways and Reflections for Caregivers

• Compassion over perfection. You won’t always show up feeling perfectly regulated, patient, and calm. And that’s okay. Show up imperfectly, and then show yourself patience and understanding. Keep trying to communicate clearly and with love, and repair when necessary.

• Advocacy takes energy — and a team. Medical systems can exhaust even the strongest caregivers; no one can do it alone. Utilize the support of patient advocates, friends who get it, or disease-specific websites and resources.

• Dual Roles Exacerbate Exhaustion. Showing up as both the advocate and the daughter can create feelings of emotional numbness and isolation. Make sure you take time to tend to your emotional needs, and use resources available to you.

• Plan ahead to Increase Clarity. DNRs, power of attorney, and clear end-of-life wishes are acts of care for those who love you. It’s never too early to start documenting your wishes. Wondering where to start? Check out Five Wishes or Tumbleweed.

• Tend to yourself, too. Your own well-being sustains your ability to show up for the people you love.

Subscribe to Stress & Love for heart-forward conversations with a social worker and people in the sandwich generation - Exploring the interplay of identity, relationships, and family dynamics. Come for advice, stay for community.

Subscribe now

Are you interested in being interviewed for Stress & Love? I’m looking to interview individuals who have gone through the sandwich generation, as well as those who are in it as we speak. To clarify: you don’t need to be a primary caregiver to be considered part of the sandwich generation. If you are supporting your parent emotionally, logistically, financially, or otherwise, and you are also navigating raising your own kids, then I would love to hear from you!

And lastly, if you are interested in 1:1 coaching and resources, please reach out to me through my coaching website, Sandwich Support Co, at the link below.

Sandwich Support Co

Setting the Scene: An Only Child and a Single Parent

Lissy: Okay, let’s start by having you share about where you are within the sandwich generation. Set the scene of what your family situation is like.

Jesse: My older daughter is 16 years old, and she just got her driver’s license. My younger daughter is going to be 10 in January. My wife, Heather, and I have been married for 19 years. I would say, knock on wood, we have a really stable family life. Yes, there’s obviously the day-to-day craziness, but at a very basic level, we all love each other and communicate clearly.

And then on the parent side, my mom is 85 years old. My mom and dad were never together. Growing up, I always lived with my mom, just the two of us. So it’s just me taking care of my mom.

Lissy: I’m curious to know when you started feeling like more intentional caregiving had to start happening?

Jesse: In hindsight, I have always been some sort of caregiving for my mom. Still to this day, my mom will always say things like, you are the best son and my best friend and my therapist.

Lissy: Emotionally it was always just a part of your dynamic.

The Tipping Point: Cognitive Decline and Anxiety

Jesse: About four years ago, I was starting to realize that there were some very subtle memory things starting to happen for my mom, and she needed more support. That’s when I felt like something started to shift where I was like, oh, shit, I need to start being a more active participant in my mom’s aging slash living process. We moved her into a friend’s house, four blocks away from us. And there was kind of something that broke for her in that move, emotionally.

In retrospect, her doctors said that the early stages of some dementia or memory loss will often accelerate when there is a major life change. You have all this scaffolding and you can kind of hide it and buoy yourself with your routines.

Lissy: I think that is really telling, the idea that people can rely on their routines to kind of mask or ignore or evade the memory issues they’re having. And then you put them into a new situation that you think is supposed to improve things and then the opposite is true, at least initially.

Jesse: That’s exactly right.

Lissy: It’s startling.

Prioritizing the Nuclear Family: Boundaries and Sanity

Lissy: What was the communication like with your mom around the cognitive decline and anxiety symptoms that you were noticing?

Jesse: Initially, I just tried to keep it light with her. But I was having to work with a lot of frustration. Because it was the same conversations over and over again.

I remember our couples therapist told us when Heather and I first got married, he drew a circle and he’s like, there’s a new thing that’s happened. It’s like you and you in here (points to circle). And your family is here now (outside circle). And your number one priority is each other. So I tried to share that with mom. Heather and I are going to be there for you, but not at the expense of my marriage and my kids. If I’m feeling guilty that we haven’t seen her in four or five days, but one of the kids had something that they need my support around right now, then that’s going to be my top priority.

Lissy: Yeah. I talk about this with folks a lot, tapping into the “why” when you want to go spend time with your parents. If you’re going because you feel guilty, then that’s not necessarily how you want to show up for a visit.

Jesse: Exactly. Heather and I have a family mantra of always choose sanity. In this moment, of the sort of choices we see in front of us, what’s the most sane? For me, for Heather, for us, our kids, and then mom, and trying to do it in that order, honestly.

Making the Call on Driving: Guilt and Worry

Jesse: So at this point, she slowly adjusted into her new house that she was sharing with another woman, and we could see that she could still live on her own. And she’s still taking care of things. But this was when I was like, I’m not sure she should be driving. We need to have a conversation about the car.

And I would send her little things. Kaiser Permanente put out this thing about what happens when you’re 80 years old and you drive. Just the pure mechanics of an 80 year old and their reaction time. I tried to start sharing some of this, just trying to normalize what’s happening.

One of the barometers I used with her driving was: if she hurt someone, how would I feel? That was one of the ways that I was trying to track and make sense of it. And there started to be a moment where I was like, Oh, I think I would feel really guilty. And also Heather, was like, Babe, I don’t feel good about this anymore. And then mom got in a car accident. She didn’t hurt anyone. She didn’t hurt herself. The car is no longer functional. And that was that.

Part of the sandwich generation is witnessing my daughter get her driver’s license in the same time frame that we removed my mom’s ability to drive. Because you just see both so clearly in concert. The absolute freedom and independence and feeling like an individual because of being able to drive. And then the opposite of ripping that freedom away from someone.

Independent Living: Troubleshooting & Finding What Works

Lissy: Tell me about your mom’s friends and community.

Jesse: She has long time friends in the Buddhist community. But what you start to see is, of the 8 to 10 really close friends, there’s really only 2 of them that are patient and skillful with her. And the rest are kind of just, like enough with the complaining. Enough with repeating everything.

Lissy: That’s really hard. And I think it puts pressure on you and your family.

Jesse: That’s exactly right. Around this time, Heather started trying to take her to the local Rec Center for senior lunch. And my mom would just be like, that meal was so salty. I would never be friends with those people. Heather would come back from it and just sort of be like, What the fuck?

Lissy: I mean, it seems like there’s a certain amount of troubleshooting that needs to happen. Where I think Heather’s impulse to jump in and “do” is so normal. Figuring how to fit in the puzzle of helping her find a new routine. And then to get that negative feedback is just so hard.

Jesse: That’s exactly right. And so it got to a place where I had to say Hon, I don’t want you to do that anymore. I would actually rather shoulder much more of the burden, and know that you can just be supportive of me and the girls.

At this point, my mom didn’t have a car. Heather and I were shopping for her every couple of days. My mom would come over, and she would just sit there silently, unmoving. We started to realize that sadly it wasn’t good for the kids, for us, or for my mom. I’d be on edge. Heather would be on edge. The girls. I started feeling really guilty.

And that’s when Heather was like, “okay, I called 6 independent living places, and I’m gonna go look at them.” It just became clear, we’re rewriting this whole thing.

Lissy: And what a gift for Heather to be like, let’s do this. I’ve taken these steps.

Jesse: It was so helpful, it was exactly the kind of help I needed.

Finding Ease: Structured & Predictability

Lissy: And I think it’s also going back to figuring out what everybody’s roles can be.

Jesse: And this is exactly why I’m so excited for the stuff you’re doing, because I feel like we just stumbled our way through it. Trial and error. This doesn’t work. We’re having too many fights. I don’t know how this works. Because she’s older than all of my friends’ parents. They’re not there yet.

Lissy: I was wondering about that, if you felt like you had friends going through it along with you.

Jesse: No.

Lissy: You’re kind of charting the path.

Jesse: I kind of am.

Jesse: In that process of finding an independent living option for my mom, Heather and I started to realize that we need to create structure around the visits. So about once a week, I’ll go and spend a couple hours with my mom. Then, roughly three times a month, my daughter and I will go in and we bust her out of there, and we take her out for dinner. And it really works because it’s a very defined beginning and end. My daughter can do that, she can show up and be her best self.

Lissy: I think that’s so smart. Being intentional about it, with predictability both for your mom and for your family. It allows the relationship to be so much more easeful.

Jesse: It totally does. And then around once per month there’s a family gathering and we’ll all be together and it’s usually a little bit too much for mom, but it’s buoyed by the fact that there’s a lot of other people there and it’s not the only way we are spending time together.

Lissy: How long has she been in independent living now?

Jesse: It has been four months. I just can’t say enough good things. I just know that there’s eyes on her every single day. There’s three meals a day. Her short term memory is not great at all. Early on, the staff did some troubleshooting to help her remember the meal times, and put a nice little thing on her fridge. But now she’s totally in the routine. Even this morning when I called her, she was like, I can’t talk. I’m going to the poetry reading. She’s doing all the things!

Lissy: And that speaks to the importance of letting the dust settle, especially for someone with anxiety symptoms. We’re not going to judge this stuff on how it feels one month in. We’re going to give her ample time to settle into and tap into the new routine.

A Continual Process: Doing the Internal Work

Lissy: I’m wondering about what you found to be the most helpful and supportive when you guys were in the thick of it.

Jesse: Yeah, probably a handful of things. One of them was the mantra of, “choose sanity.” And having a partner who could help with that. It wasn’t choosing the perfect. We’re not trying to figure everything out. You can’t, you know? So in this moment, of the sort of choices we see in front of us, what’s the most sane?

Another thing that was helpful was doing the internal work. I had this realization, when things were a bit more intense, that it’s very possible that my mom could die in the night. And our last interaction might not have been positive or a heartfelt connection. And that’s okay. I have been a good son. I’ve done as best a job as I can. There’s something there that has taken some of the pressure off.

Lissy: And if you had continued to try to have her live in the apartment with you worrying about her and serving as her sole support, I wonder if you would have been able to access that internal work? Because you would have been so overwhelmed and stressed and dysregulated. And then it’s harder to tap into that emotional processing.

Jesse: You’re absolutely right. And I can get stuck a little in the planning, I’m a real overthinker, spreadsheeter kind of person. And look, I’m under no illusion that the work is done, right? Sometime in the future, we’re gonna go through the next tranche, and need to figure it out. It’s like, there’s a little victory right now and it’s clearly short lived.

When I find myself worrying about the future and potential outcomes, Heather says, “we can only do what we can do right now. This is the right choice for right now. We want to provide her the opportunity to have joy in her life right now. I want her final years to be as joyful as they can be.

TL;DR: Biggest Takeaways and Reflections for Caregivers

• Choose Sanity: Unsustainable routines rupture family systems, and are not sustainable. Prioritize choices that take into consideration all factors at play: yourself, your spouse, your family, and your aging parent.

• Transitions: Be aware that a major life change can augment memory loss and symptoms of anxiety, particularly in someone who has a history of experiencing anxiety symptoms. Mental health and cognitive decline often co-exist, impact one another, and are augmented by transitions.

• Structure and Predictability: Implement structure and boundaries in visits, creating predictability for your parent, your kids, and yourself. Doing so allows everyone to be more emotionally available and grounded in the present moment.

• Internal Work: Do the internal work of processing your feelings of guilt, worry, and fear about the past, present, and future. Practice acceptance and a “good enough” mindset. Illicit support of a therapist, coach, or support group.

• Remember Joy: Keep in mind that the goal of all of this work is to allow for moments of joy and connection. Don’t let stress and overwhelm muddy this goal.

Subscribe to Stress & Love for heart-forward conversations with a social worker and people in the sandwich generation - Exploring the interplay of identity, relationships, and family dynamics. Come for advice, stay for community.

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Are you interested in being interviewed for Stress & Love? I’m looking to interview individuals who have gone through the sandwich generation, as well as those who are in it as we speak. To clarify: you don’t need to be a primary caregiver to be considered part of the sandwich generation. If you are supporting your parent emotionally, logistically, financially, or otherwise, and you are also navigating raising your own kids, then I would love to hear from you!

And lastly, if you are interested in 1:1 coaching and resources, please reach out to me through my coaching website, Sandwich Support Co, at the link below.

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A little background: my work as a social worker has been erratic and chaotic, in an intentional sort of way. It’s exactly why I chose this career path, to be able to be flexible and turn towards what is drawing me in. I have worked in hospice, homeless services, schools, a mental health tech start-up, and private practice. My work zeroed in on the sandwich generation during my work in schools, where I supported families struggling to get the necessary support to address their child’s ongoing behavioral and mental health challenges. Many of these families also had grandparents living at home, or dealing with health concerns that put pressure on the parent as well. And when I worked in hospice, I supported families navigating end of life and what it means to lose a parent. In my private practice, I see clients who all fall somewhere on this spectrum, and many of them are smack dab in the middle of the sandwich generation.

I’m so eager to explore the experiences of the sandwich generation beyond the confines of a therapy session. Every day, I learn so much from my clients, and it feels almost selfish (albeit quite clinically appropriate) that all their pearls of wisdom are kept private.

Through these interviews, I want to amplify and share the experiences of people who have gone through it, and can reflect back on their time in the sandwich generation with the clarity and wisdom that only time and space can provide. And I want to share the voices of people who are right there in the thick of it at this very moment. I hope that this platform can feel like a warm hug from a friend.

Aging is universal, if we are lucky. It also creates moments that are bittersweet, fraught with stress, and full of pain. How we support one another in this process is something worthy of exploration, questioning, and curiosity. We all have something to learn.

Please join me!

Subscribe now

Are you interested in being interviewed for Stress & Love? I hope the answer is yes! Please reach out to me using the button below. I’m looking to interview individuals who have gone through the sandwich generation, as well as those who are in it as we speak. To clarify: you don’t need to be a primary caregiver to be considered part of the sandwich generation. If you are supporting your parent emotionally, logistically, financially, or otherwise, and you are also navigating raising your own kids, then I would love to hear from you!

And lastly, if you are interested in 1:1 coaching and resources, please reach out to me through my coaching website, Sandwich Support Co. I’m here to support you - you don’t have to do this alone.

Sandwich Support Co