Blending art and science saved my caregiving life and allowed me to help Mom live hers.
I was slowly drowning throughout the first year after Mom’s official diagnosis. My caregiving to-do list was steadily crowding everything else out of my head and I felt powerless to stop it.
Primary care appointment on Friday
Blood work in preparation for the primary care on Tuesday
Neurologist appointment next Thursday
Prescriptions need to be refilled
Bills need to be paid, the 15th is next week
So and so is visiting next Tuesday
Physical therapy appointment on Wednesday
Make sure Mom is doing her exercises
Support group on Friday
Mom needs a ride on Saturday
Grocery shopping on Sunday
Respond to jury duty by the 14th
Mom has swim class on Tuesday and Thursday
Call insurance company tomorrow
Rinse and repeat. Week after week and month after month. Rinse and repeat.
The infinite scroll of to-do’s was on perpetual loop in my brain and seemed to be depriving my body of more oxygen each day. I was standing on the edge with a choice to make: jump or figure it out. While I thought long and hard about jumping (embarrassing but true), I’m happy to report that I ultimately chose to figure it out.
To do so, I first needed to confront my reality. The to-do’s were here to stay and would become more consuming over time, not less. I had to admit to myself that my adrenaline + brute force way of dealing with it all was not sustainable.
As a result of my admission, I could see the infinite scroll for what it really was. A collection of cut and dry problems that could be solved (relatively speaking of course, because everything is relative in caregiving) by applying some thought, logic and planning. Nothing more and nothing less. Alas, the science of caregiving.
For the first time I had line of sight into how I needed to organize. What needed to be done? Was it a one-off item or a recurring event? In answering these questions for myself, I saw individual tasks and dates instead of the overwhelming sum of the parts. This systematic thinking gave me confidence that I didn’t know I needed.
With that confidence, I was able to think about who we could get to help with which tasks or what services we could tap into to lighten the load. A smidge of organization along with the combination of a shared Google calendar, Google docs and group texts with our tribe made the scrolls manageable. Almost overnight.
One day I was drowning and a couple days later I’d found my way to the surface. Science gave me a new lease on my caregiving life and it was glorious.
Taking a situation from overwhelming to manageable, while a positive development, normally wouldn’t qualify as glorious. I agree.
But in this case I stand by my assertion because less time and mindshare spent managing Mom’s life meant more time and mindshare devoted to helping her live it. And that was a gigantic win.
While I was buckling under the weight of managing Mom’s life, I was also feeling more guilty by the day for not helping Mom really live it and be fulfilled. I didn’t even know what fulfillment looked like for her at that point but I knew I wasn’t helping her achieve it. I was helping her exist but I definitely wasn’t helping her thrive.
Nailing the science of managing Mom’s life unlocked that for me. It gave me the space to make helping her thrive my North Star. And that was indeed glorious.
The funny (laugh so I don’t cry) thing about caring for someone living with Alzheimer’s or another form of dementia is that there is always another shoe to drop. When one problem is solved, another one appears. The other shoe always drops.
I was quickly reminded that science would be no help to us in propelling Mom to find joy in her life day-to-day. A shared Google calendar wasn’t going to ease my angst when Mom was insisting her assisted living community had asked her to come out of retirement to see all new residents and medically evaluate them.
A group text wouldn’t help me get Mom to know I understand that just because she has difficulty articulating her thoughts and feelings doesn’t mean she doesn’t have them. Or that she wasn’t intentionally not answering my question. And a Google doc wouldn’t help me keep her safe but not smothered like a child as a result of a well meaning but over-bearing parent.
The living part of caregiving is the human part. It’s not about systems. It’s about emotion and empathy and expectations and patience and compassion and dignity. This is the art of caregiving.
The art of dementia caregiving, to me, has been a case study in irony. At one level, I needed to adhere to the strictest boundary of belief I ever had. While inside of that boundary, it was imperative that I had no boundaries at all.
The boundary itself was relatively straight forward. I thought of it as a frame.
Mom is not some empty host for Alzheimer’s. She. Is. A. Person.
She has thoughts and feelings and desires and she wants to express them.
Her reality and sense for time will often diverge from mine, and that is ok.
Mom wants to (and deserves to) feel joy and fulfillment.
That boundary became the frame of our lives. Mine as a caregiver and Mom’s as a person. Inside was a giant blank canvas.
When I ask Mom a question, I wait patiently for her reply instead of putting her on my internal shot clock. Do I help prompt her when she indicates she needs it? Sure. But I know she has something to convey and it’s going to take her a bit to form and deliver the thought. So I wait. It’s the subtle difference between talking with and talking at.
I know physical and mental exercise is important but stifle any guttural instinct I have to scold her into it. I believe she takes joy out of working on a puzzle for a few minutes or attending her aqua aerobics class. While I also know that on the surface sometimes her interest wanes because she’s comfortable sitting in the chair and people watching. In general, I do my best to enroll her in the process and have her lead herself there, with some gentle and collaborative prompting. Carol Bradley Bursack, author of the wonderful Minding Our Elders blog talks about this in a recent article here.
When it’s clear that Mom is on her own timescale or in a reality different than mine, I surrender to it instead of fighting it. As long as she’s safe, I go with it instead of correcting it. If that’s where she is and she’s enjoying it, who am I to stop it? And to what end? Now, we go with it.
Art and Science
Caring for Mom on her dementia journey has been the hardest thing I’ve ever done in my life. I used to think I could manage with sheer will. I believed that and I was wrong. Now I see that it takes both art and science. Not one or the other. Both.
The science kept me from drowning. But it wasn’t enough on its own. What good would my second chance be if we didn’t make the most of it? That’s where the art comes in. There’s an art to making the most of it.
I know that now. And blending art and science saved my caregiving life. Better yet, it allowed me to help Mom live hers.
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