It’s been quiet here. The holiday gift guides remain in draft mode. Cards unsent, gifts unwrapped. I’ll get there. The biggest gift this year is GRACE.
The house is decorated because #weneedalittlechristmas to be honest. So “how are you” is a loaded question. For those who have asked, and those who have not but are deep in the sandwich generation–here is an answer. I am writing this selfishly, because it needs to come out. To let the proverbial steam off the boiler.
We moved my dad to residential memory care Friday. Perhaps we should be satisfied he’s well-cared for. I could pat myself on the back for finding incredible resources. Blah blah blah.
Friends have told me “well done, Sam.” “This is just what he needs now.” “You have made your parents your priority and it’s so commendable.”
That’s all bullshit. I have not done what I wish I could. It’s not commendable, they raised me. It is what we do. This is not the way it should be. What I FEEL is deep, wrenching pain, deep in my gut. I want to vomit. Punch things. Maybe even some people along the way. Definitely some people. That’s another story. Another day.
Dementia sucks. It strips its host of EVERYTHING. It is a parasite like all others, feeding and poisoning, feeding and poisoning.
It starts innocently enough—some short term memory loss. I mean, I lose my keys on the regular so what’s the big fucking deal? A few gentle reminders and all is well.
Give it a year. Two. Four. At a year, he repeats stories. At two, he’s scattered. Prompts. Things that have happened before seem new and interesting. This isn’t so bad, right?
Four years the bottom begins to drop. The prompting is crucial each day, but resented. Where is the kitchen? How do I like my coffee? Obviously he’s fine. He was brilliant. Successful. He does not need help.
Except he does. Names have faded. Routines obscured. He FEELS acutely, but KNOWS less. He senses change in the air like an electrical current and it scares him. And sadly, he doesn’t realize it actually scares us all.
My GOD fear is powerful. WHY is it the last thing we lose? Is it a primal fight or flight response? I haven’t studied this bastard disease enough to know, but as his daughter, and likely to inherit this parasite, I suppose I should. I already fight fear every day…
Why cannot LOVE hang on tighter? He needs more care. A safe place. More than she can physically manage anymore and it pains her deeply as well. In sickness and health–that’s the vow, right? Does that mean we can or should do it ourselves or simply provide safe, dignified care? I think it’s the latter and that means change. But he feels that change as a threat, not as love.
GUILT. Why wasn’t he asked what he wanted? He wants to go home! It isn’t possible. The bile rises to my throat as surely as his anger at the betrayal.
We wait. We pray. We are advised that our absence in these first days is BETTER for him and that hurts. We should be there, no? Each day right now is such a gift, we hate to surrender even one moment.
For now, we assure HER that SHE is loved. It is the disease that requires this drastic upheaval, it wasn’t anyone’s choice, least of all his. Or hers. We will throw ourselves headlong into making this Christmas really MATTER. Because it does. My lord does it matter.
***If Dementia or Alzheimer’s has touched your family, please find support and let me know. You do not have to travel this alone***