This past week, I took my mom to respite care for the first time. While I’d been looking forward to it after a couple months of wading through Oregon’s Medicaid process, it turned out to be a pretty emotional experience. It was the first time that I’ve had any time to myself in over two years. My mom is literally with me 24 hours a day, 365 days a year and, while I adore her and treasure the time we spend together, there are times when my introverted soul craves alone time so badly I can barely breathe. Meanwhile, she is the opposite and experiences separation anxiety, often seeking reassurance that we will be “together forever.” Some days this feels like hope, other days it carries with it the finality of a lock clicking on a cell door.
It’s a horrible thing to say or even secretly think, I know, and it’s really only a passing feeling, but I’d by lying if I said it didn’t flit through my mind sometimes for just a moment. It is one of the many ironies of the disease. I am not ready to lose her (I never will be), but it does have a way of sucking away at not only the patient, but also at the caregiver’s emotional, financial and spiritual reserves. Still, our first respite day turned out to be harder on me than it was on her. I felt so lost as I left the front desk at the care center and ended up spending my first 20 minutes of freedom sitting in the car crying in the parking lot.
It’s not so much that I feared they wouldn’t be good to her as that leaving my once confident, strong , fiercely independent mother in a building with a sign out front saying “adult daycare” is just an another affirmation that shit’s gotten real. This isn’t a mirage or a bad dream, she truly has FTD and we really are on a long, slow march to oblivion.
She is aware enough to know she has trouble remembering, but she doesn’t know she has dementia. She was there when it was diagnosed, she takes her “memory pill” each morning, but she doesn’t know. Even if I explained it to her, she’d forget within minutes. And yet, there are times when she will say to me out of the blue that she will never forget me.
It’s almost as though she’s trying to convince herself, to will herself to hold onto each little shard of memory. These days her stories often begin with “I will never forget…” only to be followed with a garbled series of fact that have no adherence to chronology or sometimes even truth. Each time it is like a little dagger in my heart, because I know she will forget. She is forgetting already. She still knows who I am most of the time or at least that we are related, but there are moments.
The first time it happens is like a punch in the gut. It feels like something you will never get used to it, but somehow you do manage to endure this new normal. I saw some ridiculous quote the other day that suggested that Alzheimer’s and dementia are a bridge to God. But there is nothing of “God” in this disease, not any God I want to know. It has its lessons and being close to it changes you. Like all terminal disease, it puts things into perspective, but it’s not a fair trade and certainly not a “blessing” I’d wish on my worst enemy. There have to be less painful ways to enlightenment.
But, for now, I am told that her first day in memory care was a good one and she was obviously enjoying herself when I got there to pick her up. Despite the memory problems, she’s very social and adores being around people. If anything, the changes to her frontal lobe have made me more outgoing.
As for me, despite its bittersweet nature, the few hours of alone time had an amazing effect. I feel more patient, less hopeless, less tired. It’s funny sometimes how we can go on just existing, doing what we must and not realizing how very tired we are. I hadn’t wanted her to go to respite care, because some part of me felt that as long as I could do it all myself it wasn’t real or it wasn’t that bad, but now I realize it was a good thing for both of us. She had some fun and I am a kinder, more compassionate caregiver and know how much we both needed this.