Too soon? Too late? Right? Wrong? I have made a difficult decision
Yesterday I moved Evelyn to a memory care community about 20 minutes from our house. I promised my kids at Thanksgiving I’d investigate possibilities for long-term residential care for her. I couldn’t have imagined then I would have done the research and acted on it by April 1.
My decision didn’t come easily. Even today, after the move has been accomplished, I can’t quell the conflicting considerations colliding in my gut. I can imagine some observers have had a few of these thoughts, too.
Why are you doing this so soon?
Why have you waited so long?
You must do what’s best for her.
You must take care of yourself.
You’ll be lonely living alone.
You’re lonely living with Evelyn.
Can’t you sacrifice and keep her at home?
Shouldn’t you sacrifice and let her leave?
You can’t keep her from falling in a care facility.
You can’t keep her from falling at home.
Doctor’s advice
Two weeks ago she and I sat in her neurologist’s office for a six-months check-in, and he assessed our situation. He saw Evelyn’s diminished state, and he saw my tears as I talked with him about it.
Soon he looked across the room and surprised me. “I believe it’s time for you to move Evelyn into a facility,” he said. I think he was as concerned about my capacity as her condition.
He agreed matter-of-factly that Evelyn would fall again, wherever she’s living. Maybe someday the Parkinson’s will weaken her so she can’t walk and she’ll stay in a wheelchair. Maybe someday the Alzheimer’s will stop short-circuiting her brain and she’ll lose the compulsion to be on the move. Until then, she likely will fall.
Evelyn posed with new caregivers not long after we arrived at the new place Tuesday morning. They agreed to work on building a habit of using the walker.
I decided the fall risks are somewhat lower in the care community (a less complicated floorplan to wander than at home, less furniture, wide hallways where she’ll likely be willing to use a walker, the security of her own small room, and the possibility she’ll spend a lot of quiet time there). And I’m hoping professionals will deal with her falls better than I can. I’m not strong enough to lift her. I’m not coping well with the 24/7 pressure to keep my eyes on her.
The fact is, there’s no good decision. I’ve made what I hope is the least bad one.
Cutting deep
Several weeks ago I was talking with a friend about next steps, and he said, “You know, Mark, we’re just spittin’ in the wind here.”
Evelyn will fall and fail. With or without drugs to help her, her smile will eventually fade. Of course, we want what’s best for her now. But it will never be good enough.
Two pretty smiles at church Easter Sunday morning. (Lisa, a friend and one of Evelyn’s at-home caregivers, was also with us for the transition at the care facility yesterday.)
A caregiver friend reminded me again that Alzheimer’s is death by a thousand paper cuts. I’ve experienced that again and again in the five years since a doctor first used “Alzheimer’s” to describe her condition.
But some cuts go deeper than others. And the move we made yesterday is the most painful so far.
I can’t say I’m not looking forward to the freedom I’ll experience without the burden of Evelyn’s constant care.
But I’ll hasten to add that learning to live without the privilege of providing that care is going to take some time. This is a new crossroads in the journey. And the journey is not nearly finished.