Hi everyone! Welcome to my shiny new newsletter on the sandwich generation caregiving experience. I’ll be using this space to experiment with weaving personal stories together with broader research, ideas and challenges surrounding the care economy. This week’s newsletter is inspired by the road trip I took recently and the caregiving-related memories and ideas it inspired. If you like it, consider sharing it with others who may be interested!
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The drive from Seattle to Vancouver means passing through the college town on the coast where I grew up. The familiar salty Bellingham smell and sights bring a rush of memories. My elementary school just to the left; my mother’s old doctors office; the building that housed the restaurant where I had my first job at sixteen; the street where my high school sweetheart lived; the nursing home where my grandparents lived until they died. And on and on. It’s ground zero of a caregiving journey that started too early and later, was the backdrop to many challenging transitions. So naturally those memories are a bit fraught.
I passed through Bellingham on a mini road trip from Seattle to Vancouver earlier this month with a dear friend who lives across the country. It was a true gift to have time with her as well as a break from the daily demands of caregiving. I didn’t wake up in the middle of the night to a three year old climbing over me to get in my bed; I slept in; we wandered the city with no time limits or agenda and ate at adult restaurants while having adult conversations. My husband held down the fort with our three kids, and it was the first trip in a long time during which I received not a single phone call or text about my elderly mother or disabled brother that required me to snap back into caregiver mode. It was freedom and it was glorious.
Sandwich Caregivers are the most likely to experience caregiver burnout. It’s been a slow and unsteady process for me to figure out how much care I can give, what I can outsource, and to let go of the guilt about what I’m not doing, or for carving out “me time” when there is always a long list of things to do for someone else. Taking trips like this has been a key strategy to minimizing burnout. Solo parenting three kids for a few days is exhausting, but my husband and I have decided that it’s worth it to each take it on occasionally in order to allow the other person to get a break. It’s so, so important.
Another strategy has been to hire an eldercare consultant to help manage medical visits, communication, assisted living orders, and provide some social time for my mom. At first I felt that I had to do it all, but it was impossible and I was burnt out and resentful. An eldercare specialist does more than a caregiver. Beyond help with activities of daily living, they will own areas of support fully: making doctors appointments and setting up or providing transportation; noticing areas where extra assistance is needed; sending updates to family members; sorting out finances; anything that you may want to hand over the full “mental load” for. An eldercare consultant is significantly more expensive, but getting this type of help has been a game-changer for me.
A noticeable change in disability awareness
Paul Reubens, aka Pee-Wee Herman, died a few weeks ago. This combined with my trip through Bellingham triggered a flashback of funny memories and some thoughts on my experience with my disabled brother Leif. We had a lot of Pee-Wee Herman going in the background for a few years growing up because Leif - who has Downs Syndrome and OCD - would become obsessed with movies and watch them on repeat. There’s a scene in Pee Wee’s Big Adventure where PW pretends to eat his food like the dog, and much to my mother’s chagrin, my brother incorporated this move into his routine before every meal. Without fail, and in all seriousness and dedication, my brother cocked his head, opened his mouth, and hovered over his plate while emphatically pretending to eat like a dog, every time.
I think my mom tried to break the habit after a while, but eventually Leif caught on that he was doing something funny so we all just had to laugh and roll with it for the year or so that it lasted. It was not ideal in restaurants though. Back then in Bellingham, there was already a lot of staring, sniggering, and finger pointing when we were out and about with my brother. The "R word” was still a totally acceptable insult in many school children’s vocabulary - despite how deeply offensive and painful it was for many of us. We still have a long way to go in terms of disability justice, but I have felt a huge increase in social awareness, sensitivity and accommodation for disability in the past 25 years.
This is the part where I urge you to get your shit together
My hometown is a stark reminder of the episode that began my sandwich caregiving journey - my mom getting extremely sick and spending weeks in the hospital. Suddenly I was back home, paying bills, scrambling to figure out finances, looking for a place for her to live, and trying to gently yet assertively talk to her about the inevitable changes that would need to take place.
When we drive by the credit Union where I held my first bank account, I have a pang of anxiety remembering that I still need to to sort out some accounts for my brother, as his guardian. My dad needs to initiate the task but his health and cognition are declining as well and it’s been a struggle to make it happen. One of many examples of how lack of planning and continued revision of documents and plans for aging has caused massive headaches and inefficiencies (at best).
I won’t tell you that you don’t have your shit together… but I will ask: do you have a will, health directives, and written and notarized instructions about what should happen if you were to be incapacitated or die suddenly? I know, it’s not fun to think about. In fact it’s super uncomfortable. But you’ve got to do it before your children or other family members are thrown in over their heads by a crisis, with no roadmap and too few clues. Have you asked your elderly parents if they have their shit together? I’m shocked at how many friends have confessed that their parents have no will and no plan, and most likely not nearly enough saved for retirement. Many of us feel nosey for asking our parents too many questions, but I’ve realized just how ridiculous this seems once everything falls apart and you’re stuck making decisions with nothing to go off of. The GYST website is incredibly helpful. I heard the founder’s story about eight years ago, and it compelled me to start the process of getting my nuclear family’s shit together. Her husband was killed in a bike accident, and managing arrangements and finances after his death was so difficult (beyond the unthinkable grief) that she was inspired to create GYST. It hit closer to home because her husband was killed biking to work at the same office that my husband later worked at here in Seattle.
So we made wills and plans for the unthinkable, including who would be responsible for our children, knowing that none of our parents were in the position to care for them. It was uncomfortable, but we had a skilled professional help to make it less so, and I now feel much more at ease. I know it was in our best interest, and even more it was an important act of love and respect for our children and those closest to us.
The next frontier is to think about the digital archive that we will all now leave behind - whether we like it or not. There’s less of a playbook for this, but one of my recommended reads below got me thinking about it. I learned that, in addition to in-app tools and settings, there is (of course) a growing list of online products. Do any of you have plans for your digital estate?
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As I passed through Bellingham this last time, blissed out from almost three days soaking up PNW summer in all its glory, I realized that the painful memories connected to this place are only part of my caregiving story. It felt good to recognize that with time and spacial distance, I’ve moved toward acceptance of my situation and confidence in my choices about how to navigate it. I’ve learned to make room to care for myself along with everyone else, and that’s a win for everyone involved.
In summary
Two of my recommended strategies for caregiver burnout are physically getting away for a couple days, and hiring an eldercare consultant.
Cultural attitudes toward disability have greatly improved, but we still have a long way to go when it comes to accommodations and disability justice.
Plan for old age and death, find out your parents’ detailed plans, i.e. get your shit together.
Start thinking about your digital legacy. Admittedly I’m not there yet but I’m interested to see how people are managing this. Please share what you learn with me.
Recommended caregiving reads
Essential Labor: Mothering as Social Change by Angela Garbes
My Mom will Email Me After She Dies
A Pill for Postpartum Depression is a Game Changer for Women’s Health
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Thanks for reading all the way, friends. If anything here resonated with you, I’d love to hear your thoughts. Or, if you have ideas for topics that would be interesting, comment or reply here and let me know.