She doesn’t use her dishwasher or her oven anymore.
Correction — she uses these things, but not in the manner in which they were intended to be used. They have become filing cabinets of sorts. The top rack of the dishwasher is where she stores paper towels. Not rolls of paper towels, but individual sheets that have been folded into thirds. They are arranged in the rack quite neatly. The bottom rack holds her mail. We, or her aides, usually are able to grab it before she does, but sometimes she retrieves it, and so into the dishwasher it goes. The oven? Old checkbooks, mostly. (Note: we had said oven disconnected from the gas months ago.)
We are in the habit of regularly checking inside the oven and the dishwasher to make sure we’re not missing anything important in the way of her paperwork, especially around tax season.
My mother-in-law was diagnosed with Alzheimer’s in 2010, but had been exhibiting symptoms for a good year or so before that. She lives in a two-family home and my husband and I moved into the downstairs apartment 3 ½ years ago. We have been her caregivers ever since.
As I write this she is somewhere around Stage 5. She can dress herself, for the most part, although in recent months she has needed both help and prodding with this. I think she would prefer most days to stay in her pajamas, but getting her out of her clothes and into said pajamas is a crucial part of the evening routine, so that she knows it’s bedtime and will go to bed instead of roaming her apartment all night. So I make sure she gets dressed, and leave notes for the aides to convince her to do so as well.
Routine is everything around here.
She has aides with her every weekday while we are at work. Marion on Mondays. Nancy and Liuda on Tuesdays and Wednesdays. Nancy until around 3:00 p.m. on Thursdays, at which time my brother-in-law takes her out for dinner. Nancy on Fridays. We take over at 6:00 p.m. each night, making her dinner, getting her into her pajamas and ready for bed. We make her breakfast in the morning, feed her cat, and make sure she hasn’t broken, or could potentially break, anything. We stay home on weekends. One of us stays home while the other runs errands or goes shopping. We have to turn down most invitations to parties and shows.
She cannot be left alone in the house, not even for a couple of hours. She has flooded her bathroom (and subsequently, ours as well) at least three times. She puts cat food in the washing machine. She overturned a planter full of dirt on the kitchen counter so she could “clean” it. We have long since stopped underestimating her ability to create a fair amount of chaos in pretty short order.
She can be docile and childlike a lot of the time, but she can also get obstinate and quite rude with us if she doesn’t get her way. No, you can’t stay in your pajamas. No, we’re not going to throw away your antique desk. No, you can’t eat just cookies for dinner. She is, at times, a 73-year-old toddler. A toddler who has a vague recollection of having once been independent. I cannot imagine what a living nightmare that is for her.
It was only a few years ago that she’d taken herself to Italy. She was an avid viewer of Boston Legal. She read, and re-read, everything by Truman Capote. Everything was organized and labeled. She never needed to follow a recipe card for most everything she made. She followed my blog, made comments, sent jokey emails. I considered myself lucky to have a mother-in-law like her.
Now, she can no longer read. Signing “Nonni” to her granddaughters’ birthday cards is a struggle for her. She made us throw out her television set, because she didn’t know what it was for, and didn’t want it in her house. Her world is growing smaller and smaller.
“Why don’t you just put her in a nursing home?”
Well-meaning people, people who see that we’re under a lot of stress, ask this as if it is something we haven’t considered. As if it’s the simplest thing in the world to do. It isn’t. I won’t get into the list of things which one has to be in order to be considered “medically eligible” for a nursing home, according to Medicaid. I won’t get into the endless paper trails we are trudging to get her legal and financial ducks in a row. I won’t get into how many nursing homes frankly just fucking suck, and how I would really, really not be able to live with myself if we left her in one of them. I try not to go into the details with these well-meaning people, because in the end, I sense that they really don’t want to hear about it. Why would they?
Prior to 2010, I was one of those people who breezed by Facebook posts about raising money and awareness for Alzheimer’s. It didn’t affect me personally, and I was on Facebook to look at stupid cat pictures and pick fights with trolls. Prior to 2010, I was one of those people who’d joke that I had “the Alzheimer’s” because I couldn’t find my keys. Prior to 2010, I was pretty goddamned ignorant.
Sometimes, I wish I still was.
Because for all the “rewards” of caring for my mother-in-law (I’m finding strength within myself that I didn’t know I had! I’m not ever going to take things for granted ever again! Tra la la!), there are days when I would dearly love to not have to deal with any of it. Not the cat food in the washing machine, not the surreal purgatory that is “adult day care,” not any of it. I long for selfishness and solipsism sometimes. I’m sorry. But it’s true.
We did this, moved in, agreed to take care of her and let her live in her own house until it was no longer possible for her to do so, because it was the right thing to do, and because she asked us to. It made sense at the time. We were paying a ridiculous amount of rent to live in Boston, we have no children, and…yeah. It made sense at the time.
I am aware that as far as caregiving goes, we have it better than many, many others. My mother-in-law was good with her money, to the point where we can afford to have aides with her. My brother-in-law and his family take her on some weekends, so we get breaks from it here and there. I belong to enough online caregivers’ forums to know how bad it could be. Some people (mostly women) are doing this completely alone. Some people have zero support from other family members. A friend of mine is caring for her mother. One of her brothers agreed to assume caregiving for a few days so that my friend and her wife could go up to Maine for a breather. Eight hours into their trip? The brother called and told them to come back, because he couldn’t “deal with her.” I am no longer surprised at how many people will turn their backs on their parents, grandparents, and other loved ones because they don’t want to “deal with it.”
Listen — I am no saint for doing this. If you could hear some of the things my husband and I say to one another in the course of a day, you would have very little admiration for me. I am quite certain that someone else could be doing this better than I am currently doing. I am patient with my mother-in-law. I am gently reassuring as she struggles with her clothes. I smile beatifically as she tries to brush her teeth with a wad of toilet paper. I pretend not to notice her rolling her eyes at us when we tell her that she has to wash her hands after using the toilet. I acknowledge her dissatisfaction with her now-hated coffee table, and quickly change the subject. Over and over again. Is this an untapped source of empathy and patience, or is it my Bachelors in Theatre? Hard to say.
It is terrifying to watch someone slip away from this disease. Terrifying and heartbreaking and exhausting and depressing. There are times when I really can’t imagine a point where I am no longer having to do this. But 3 ½ years in, all I can think sometimes is, “What if I am STILL doing this in three years? Five years?” I really try not to imagine having to go through this again with my husband, or consider that he may have to go through this again with me. But, you know, it could happen. There doesn’t seem to be any rhyme or reason in terms of who gets Alzheimer’s and who doesn’t.
I took a minute just now and read through what I’ve written. My life is really not that dire. Again, we have it so much better than so many other caregivers out there. However, not acknowledging the frustration, drudgery, and heartbreak of our situation – to not speak of these things, but to instead stuff them down for fear of appearing as though I’m whining – I don’t think that’s helpful for me.
I write this in hopes that there are others like me. I’m in my forties. I’m not especially spiritual or religious. I don’t find images of teddy bears and roses, accompanied by bad poetry, particularly comforting in the midst of all this. I want to hear that I’m not completely insane for thinking some of the stuff I think. I want to be able to laugh sometimes. I want to hear how others are caring for themselves in the fleeting moments during which they are not caring for someone with Alzheimer’s (or Parkinson’s, or cancer, or any other debilitating illness). I want to not feel so alone.