I guess I'm still writing these yearly check in posts. They do something for me. Articulating where I am each year helps me see our situation more clearly and lets me put it in context. It's the most personal post I put up each year and I always debate whether I want to do it, but then I do. The accident, year one, year two and year three are right here.
This day four years ago it was a Wednesday and the election results were splashed all over the news and I got a phone call from my mom as I stepped out of the shower at the gym and our lives changed in an instant.
Four years feels like forever and nothing at all. I thought this year would be easier, a plateau where we could all just take a breather, but we're finding that it's just as difficult in different ways.
After last year's post I went on obsessive internet searches looking for solutions. I found an affordable adult daycare close to my parents and it's been a mixed blessing. It gives my mom a break for a portion of the day, but it still isn't nearly enough time to take care of the house, the usual errands and herself. How can you fit a life in 7 hour increments? Dave hates it and rebels by dawdling as long as possible in the mornings, whittling down the time. We hate that he hates it but haven't found a better option. It's heartbreaking. How can I reconcile myself to knowing that there is no good solution for my family? That we're always going to be choosing between competing needs? I cling to my assertion that Dave is a part of our family and even if he isn't fully capable of understanding that anymore, he needs to be part of the team and that means he won't always get what he wants, just like the rest of us. Underneath my skin I feel flinty and bruised, all at once.
Dave has enough of his faculties left to be aware of his deficits, but not enough to resolve them. There won't be any improvement. The doctors can't tell us exactly what to expect, but the consensus is that brain injuries can accelerate the onset of dementia. We're not sure how much time we have and that makes it hard to plan. He needs to be within earshot of someone at all times, day and night. He'll put something on the stove and forget about it, he'll fall asleep in the shower, he thinks he hears us calling to him and he gets up and wanders off, he has seizures that terrify him.
We've started looking for residential facilities, with no idea of how we could possibly pay for them once the time comes. We found a place that looks promising but Dave is concerned that everyone there is too old. It broke my heart when I realized that he thought he was more functional than they were, these elderly people with walkers who were clearly still able to hold their own in the lunchtime gossip sessions. He has no idea. We observed and ate our soup with crackers, asking Dave questions to keep the conversation going, as we've learned we have to do. I can't find a place close to us that has residential traumatic brain injury care and I'm not sure Dave would like it any better if I did. Every brain injury is different, experienced differently by the individual. Where does Dave fit in now? Where will he fit in five years?
What Dave wants, what we all desperately want, is the life we had pre-accident. Realizing we have to settle for something very different was hard enough for the rest of us and it's proving nearly impossible for Dave, understandably. My mom is worn thin and I'm afraid that a few more years of this and I'll lose her as well. I suddenly see the appeal of families with seven kids. My sister and I aren't enough, can't be enough. We need hands to trade off, people to step in, schedules that could be coordinated in giant color coded spreadsheets.
I worry about how Dustin and I can keep our lives moving forward, when we're constantly tugged back home. There isn't enough time to give to everyone who needs us, so we exist in a near constant state of guilt, but we can't keep shorting ourselves either. I alternate between thinking we'll never have kids, to spare them this kind of caretaking and then wondering what will happen to us if we don't. I make a mental note to check into long term care insurance, either way. We talk about setting aside a certain number of days each month that are just for us. Sometimes we even manage it.
I feel like I'm in a house with lots of hallways but no doors. Every option that comes up is flawed, every potential solution is unaffordable or impractical. I pingpong between rage, optimism and hopelessness. I know that our situation isn't unique. Caretaking is something most families will deal with in some form, sooner or later. That doesn't make it less lonely.
The sadness is an undercurrent that runs beneath us but we try not to let it pull us in. I'm glad that Thanksgiving comes shortly after this anniversary. My favorite holiday, a chance to regroup and remind ourselves that we're a family, that we chose each other and we continue to choose each other, even when life doesn't turn out the way we'd anticipated. We're going to keep looking for solutions this year, because I refuse to accept that there aren't any. Family is worth fighting for, always.