Under the cover of the quarantine, I moved Mom to memory care. And I loathe myself for it.
In spite of my boundless regret, I know I did it for the right reasons. It’s the best option for Mom. Courtesy of Alzheimer’s Disease, the (wonderful) support provided in standard assisted living was no longer enough for her.
Moving her in with us wasn’t an option because between and the kids, we don’t have the space. Even if we did, I don’t believe we could give Mom and her Alzheimer’s Steve and his Lewy Body the care and support they deserve.
So with a few signatures and a couple of phone calls, it was done. Mom was moved down one floor to memory care . I couldn’t be there due to quarantine, so on the cold spring day when it all went down I barely even noticed other than a new phone number.
I acknowledged the milestone in our journey (quietly to myself) and I sighed a sigh of relief. Because now Mom will be getting the support she needs.
It’s hard to know if what came next should be attributed solely to her transition to memory care, the general change in routine as a result of the necessary precautions taken by her senior living community to stop the spread of coronavirus-or if it was purely the progression of her disease happening on its own timeline.
Seemingly overnight, Mom changed. A change so stark that I barely recognize her. Her positive, determined and smiley outlook was replaced by fairly constant agitation, depression and delusions. Put simply, she seems defeated-and angry about it.
The worst part is that at her core, she seems angry with herself. It’s heartbreaking to see and hear. It makes the feel a world away and rolling with her reality more difficult than it’s ever been.
Memory Care and regret
For ten weeks, visiting in person was not an option-and rightly so. That and I’m hopeful for some level of bounce back as Coronavirus restrictions are lifted.
While I’m hopeful, in my heart of hearts I know it is wishful thinking. Could I be wrong? I hope so. I dream that I am. But something tells me I’m not in this case.
So I’m left with an unfamiliar strain of regret. On its own regret is an insidious and soul sucking force. Combined with the pervasive feeling of helplessness brought about by the absolutely necessary precautions taken to stop the Coronavirus, it is eating me up from the inside out.
Could we find a way to make it work with Mom and Steve and the kids and the dogs? Would we have been able to give her (them!) the care they need? And help them thrive? Can two months really have this big of an impact? If it was the right decision, how come it feels so cruel?
These are the questions running on repeat through my brain. They’re a form of ironic torture because on the one hand, I believe it was/is the right decision. Mom needs the support that memory care provides. Yet the questions persist with no way to reconcile them in sight.
Like so much else in Alzheimer’s (or any form of dementia for that matter), sadness is at the core of the issue for me. Sadness for Mom. She, like the millions of other people around the world living with Alzheimer’s, deserves better. And sadness for the kids and me too. Mom has so much to give and she’s being prevented from doing it. For no good reason.
Until this point, I’d found a way to live with it. To acknowledge and process the sadness in order to make space for the positivity I need to do my caregiving job of helping Mom live life and find joy (not just survive) in spite of the disease’s progression.
But it’s different now. The sadness is heavier and scarier. Mom is more unrecognizable than ever and I feel utterly helpless.
So where do we go from here?
The short answer? We keep going.
The staff members at her community are wonderful. They have been and continue to be invaluable partners in Mom’s care. As are her neurologist and primary care physician. I continue to work with them to help Mom as the circumstances continue to change, with the goal of keeping her safe but also helping her find every bit of joy she can.
To that end, much of the tactics we write about will remain the same. Their shape and form may shift, but the approaches and goals will remain.
Never losing sight of the fact that Mom’s in there. She’s cloaked in the heavy blanket of Alzheimer’s, but she’s there. And my job is to ensure she feels loved and valued throughout our pursuit of her comfort and happiness.
And I’ll try to remember that’s why I moved her to memory care. Even if I regret it for now.
Originally published at https://roandsteve.com on June 17, 2020.