Why We Walk, Week 3: To Support Caregivers

This week I want to write about the ups, but mostly the real challenges

of caregiving. I could get really rambly (and this post is by no-means short), so I've divided my thoughts into four key takeaways I'd share if I had to summarize -

1. Caregiving is complex.

One of the greatest daily challenges for Charlie and I surrounds naptime for our kiddos. Asher naps from 11am-1pm, a time of day that I’ve come to dread. I can boil the source of this angst down the basics – it is nearly impossible to keep Mom from going upstairs or clamoring around the house during this time frame. A simple ‘please be quiet for the next two hours’ doesn’t work because she forgets, or she remembers but gets hungry, anxious, etc.

I’ve gotten wise over the years. I now make her sandwich before Asher goes down for his nap so that I don’t have to worry about it mid-way through the nap. I know to try and find an activity to occupy her time during that span. But even with all of these preemptive steps – some days this doesn’t go right and Asher gets woken up, or I get angry at Mom for being loud and nearly waking him up. The base-level, all-consuming anger grows not only at the tangible repercussion of waking up a toddler from his nap, but also from a deeper resentment that this is something I have to mitigate for as a new mom. Feelings of -- 

Isn’t being a new parent challenging enough?

 or

deep jealousy of other women who get help from their Mom are constantly bubbling below the surface.

This particular challenge is unique to our scenario. Many Alzheimer’s caregivers aren’t among the sandwich generation (those of use caring for children and parents). However, with Alzheimer’s each individual’s trajectory of memory loss is different – so I’m sure each caregiver you speak with could describe a specific, very particular challenge that throws their quotidian activities for a loop.

2. Caregiving is isolating. 

Early on I read the book A Bittersweet Season: Caring for our Aging Parents and Ourselves by Jane Gross, and I remember her highlighting the Catch-22 of how ‘no one in your social circle really wants to talk about the day to day things you’re doing because they are mundane and depressing, but on the other hand it is your entire world and you don’t have much else to talk about’ (paraphrasing here, couldn’t find the exact quote).

While the language is strong, I’ve found this to be mostly true. All of my friends ask and genuinely care, but it’s difficult to listen to someone share for an extended period of time about a helpless situation. It’s hard to sit with someone and hear about a painful experience and not know what to say. And, on my end, it’s hard to be vulnerable and speak openly about this during casual hangout times. The combination lends to often feeling like there isn’t a good, carved-out space to talk about the challenges – but that also often leaves me feeling totally void of anything to contribute when out with my other twenty-and-thirty-something friends, as caregiving (and now, parenting) has come to feel all-consuming.

3. Caregiving is un-sexy. 

I always think back to my favorite part of David Foster Wallace’s ‘This is Water’ when I use the term unsexy.

The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day. 

Alzheimer’s caregiving feels like the definition of the unsexy kind of love – the constant repetition, endless patience, and tiny-detail-esque management and guidance you provide is all-consuming and often unseen.

4. Caregiving is a calling that is central to maintaining healthy community.

I believe strongly in the centrality of community; I believe relationships and caring for one another are the most important thing we can contribute to throughout our lives. So, when Mom received her diagnosis I couldn’t see any other option than to move home. My career to date has been in the non-profit sector, and I can’t help but think that if we had less brokenness and abandonment of family and our immediate community, that there would be less need for the type of work that I do.

(Please know that I absolutely am not saying here that I think everyone is obligated or responsible to care for their immediate family member XYZ if they are sick, as relationships are complex and deep and there is so much involved.) But, what I do know is that I felt that I was in a position where I could help Mom and knew that it was the right thing to do. However, the decision to do the right thing meant embracing a significant shift for what I’d expected my late 20’s/early 30’s to look like.

Sometimes the hardest thing to do is the smaller, daily calling that is right in front of you. My community has been different but rich because of my role as caregiver. Overall, I’m grateful for how my experience as a caregiver has led me to deepen my dependence on my community and has forced me to embrace how to live in a more honest and authentic way.

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