As we get closer to placing my mother-in-law in assisted living, I find myself breaking down more than I did when we were looking at no end in sight to this particular leg of our journey. I’d say I cry, on average, about 4 times a week now.
If all goes according to plan, she will be in assisted living by early July. And yet I am walking around in a grim little cloud of dread. This is partially because of how I’m wired. I am perpetually at the train station on the corner of Fear and Faithlessness, with my passport stamped for Worst Case Scenarioland. I’m convinced that something will go wrong, like the staff from the facility will come to evaluate her and tell us there’s no way they can take her.
And then a lot of is simply situational anxiety. We are living day-to-day in a veritable pressure cooker: Is she up? What is she doing? Can we get to the litterbox before she does (because if she gets there first, there is no telling where we’re going to find cat poop)? Is she going to try and move something she shouldn’t? Can we keep her out of the basement? What is she doing? Why are her underpants on a plate under the bed? How long have they been under the bed? How can we stop her from continually clawing at herself? What is she doing? Are we going to be able to convince her to take a bath? Is she sleeping? What is she doing?
There is no way I can “relax” under these conditions, no matter how many times people tell me to do this. I am functioning, I am remembering to breathe, and that’s about the best I can do.
And then there’s the guilt. On a good day, when she hasn’t wandered out into the yard and attempted to dig up the azalea bush with her bare hands because she doesn’t like it anymore, when she is sitting quietly and leafing through a photo album, I think to myself, “How can I do this to her? She’s fine.” I have been conditioned, as many of us have, to believe that when a loved one has Alzheimer’s, the “best thing” is for her to remain at home, surrounded by family members who may or may not have the skills to deal with the myriad issues that come with the diagnosis. And, you know, in many families that’s absolutely true. It isn’t in ours. Even with help, we cannot take care of her properly anymore, if we could even take care of her properly AT ALL, and sometimes I feel like the biggest pile of shit in the universe for my overall inability to deal.
And then yesterday I logged onto my online caregiver’s support forum, and saw a new member chastising anyone and everyone who mentioned having to put their loved ones in assisted living or a nursing facility: “They didnt give up on u why u give up on them?” Are you KIDDING me? This is a support group, right? Did I log onto the wrong forum? Is this the “Let’s Make Caregivers Feel Like Crap For Making Really Difficult Decisions” forum? What the fuck, lady?
Lord, I’m a mess. I can’t imagine what I’d be like if we didn’t have the support we do. I feel like such a selfish git for looking forward to the day I can hear that so-and-so is playing at such-and-such and realize that I can actually go, without calling my brother-in-law or the home aide service, without working around more than one other person’s schedule. I feel like a jerk for looking forward to waking up in the morning and NOT listening for running water that’s running a little TOO long. But I can’t help it. Superficial crap like this is what is keeping me going.
I hope that once she is there and safe I can breathe a little deeper and remember to not take anything for granted. Going out to eat. Running an errand without looking at the time every 10 minutes. My own ability to remember my name, the year, and who the President is.
A woman in my support group mentioned that once her journey is done, she is going to make herself available to sit with an Alzheimer’s patient for a couple of hours to give his or her caretaker a break. I nearly burst into tears when I read that. It’s an incredibly generous thing to offer. Because TIME – even an hour or two – is what we crave the most. But it’s also the thing we feel the worst about asking for. Everyone we know is busy. Busy with kids and work and plans. To ask someone to please watch my mother-in-law – who cannot carry on a conversation, play a board game, or sit through a movie – feels like I’m imposing in a huge way. I love her very much, but she is profoundly impaired and if you’re not used to this, I can tell you right now it’s a very long couple of hours.
This disease is so horrible. It’s more than memory loss. A person with Alzheimer’s doesn’t go gently into that good night…sitting in an easy chair and slowly drifting into a vague dream state. And every time a friend of mine jokes that he or she is getting Alzheimer’s because of something like lost keys, I want to scream. Stop it. You don’t have Alzheimer’s because you misplaced your iPhone. But I get it. Before I witnessed this first-hand, I said the same kind of stuff. Old Timer’s Disease. Haw haw haw. I had no fucking idea.
The statistics right now are not in anyone’s favor. The chances are very good that someone you love is going to be diagnosed with Alzheimer’s in the next few years, if it hasn’t happened already. I write about this because I have to. This is the day-to-day awfulness of watching someone slowly lose almost every bit of what made her who she was. I’d love to talk about something else, but I can’t.
I want so much to believe that we’ve done the right thing, that things will be a little easier for us, because I am so tired and so unbelievably stressed out by just the last 8 months of this.
Five years ago, Kevin and I almost split up. We came to our senses, agreed to work on ourselves and our issues, and less than a year later, my mother-in-law was diagnosed with Alzheimer’s. And then we didn’t have time to “work on ourselves and our issues” anymore. It seems they’re being worked on now, as we try to slog through all of the paperwork, appointments, and surprises that are continually being lobbed at us from doctors, lawyers, and various and sundry “administrators.” We are more of a team now than ever. We take turns ranting and quietly listening without judgment. I give his mom a bath, get her dressed, and tend to the cuts and wounds on her legs from the constant scratching. He fills out the paperwork, makes the appointments, and writes the checks. We both fix her meals and keep her apartment clean. I’m glad we stayed together. This is what needed to happen.
So there’s that. I suppose I have to give myself some credit in the midst of all this.
And in the midst of it all, I have been blown away by the simplest acts of kindness. The friend who sent me a Starbuck’s gift card. The religious ladies on the caregivers support forum who keep telling me they’re praying for me. And this ridiculous thing that another friend sent to me today:
Skeletor on a kitten. My word, the world really is a great place, isn’t it.