It’s strange to watch someone with dementia regress. These days, Joy is still caught between what used to be and what is. What is: Phil can no longer follow a plot in a film or episode. During The Crown, he repeatedly asks, “Who is that?” Joy: That’s the Queen.
Some evenings, she reads to him from her favorite children’s book. Each chapter is a separate episode, and he seems to follow the plot, if he doesn’t fall asleep. When the grandchildren were visiting, Phil watched cartoons with them and was as engaged as they were, laughing and making comments. Seeing the three of them with their eyes glued to the screen was disconcerting.
Like a toddler, Phil needs help choosing appropriate clothing for the weather. Unlike a toddler, he doesn’t learn the routine, and has to have it repeated each morning. He needs reminders for hygiene. Joy’s daughter quizzes her girls, “Did you brush your teeth?” Joy hears herself say the same thing to Phil and can’t quite believe this is her life. “You need to cut your nails—trim your beard—did you put on deodorant?”
Joy can’t imagine what it’s like inside Phil’s brain. He rarely expresses anything about his struggles. Sometimes, after a memory lapse, he’ll say, “You’re not going to put me in the nut house, are you?” Joy answers, “Not yet.” Which is, sadly, true. He depends on her for direction, for support, for assurance. He has separation anxiety, just like a preschooler. Since COVID began, they haven’t been apart for more than a couple of hours at most.
Phil lives in the present. When they take the same route into the nearby town, Phil remarks on the same parking lot full of cars, the same empty storefront, the same leafless apple trees. Joy is almost envious of his lack of past and future. She wonders what it would be like to be only aware of the present moment. Isn’t that what practitioners of eastern religions try to attain?
When is it time to turn over the caretaking? Joy wonders. What if he becomes belligerent? A wanderer? Incontinent? How long would she–could she–keep him at home?
When you’re dealing with a person who forgets stuff, the challenges spawn adaptations. The problem with caring people with dementia is that, unlike a toddler, they don’t maintain the learning. What you show them one day is usually gone the next. So here are some fixes that myself and other caregivers have come up with regarding clothes.
> I complained to the caregivers in my support group that I couldn’t get my husband, P., to change out of his long underwear and into his pajamas so that the long underwear could go into the hamper. One of them suggested I buy more sets of long underwear, which I did. I’ve even labeled them so I can match up the gray tops and bottoms easily. Next time I’m buying different colored sets.
> P. likes to sleep in his long underwear. Left to his own devices in the morning, my husband will shower and then put on the same long underwear and the clothes that he wore the day before (see above). We’re working on getting him to go directly to the bathroom and put his long john “pajamas” and underwear and socks directly into the hamper. So far, it works–sometimes. He often asks, “But what will I wear today?”
> Routines are really important for folks with memory loss. P.’s now getting pretty good at remembering to change from muddy, outdoor boots into clean house sneakers.
> P. has little discrimination regarding outdoor temperatures. He tends to be cold a lot of the time. But he needs help choosing a jacket. I try to limit the choices on the coat rack to two at most.
> He sometimes mixes up his layers, putting the down vest under his flannel shirt. I just make light of it and help him switch them around.
> A couple of years ago, I bought him a fancy velour jogging suit. The pants were easy pull-on, and the jacket was warm. It was a pretty spiffy outfit. I thought it would make dressing easier. He hates it. The only times he’s worn the jogging suit is when he’s had an endoscopy.
> P. helps me fold and put away the laundry. But he doesn’t always remember where things go. I haven’t yet resorted to labeling his dresser drawers, but that means that I have to reorganize when he puts his clothes away.
> Another caregiver said that she packs away all the off-season clothing. I took her idea and put all the summer clothes away, leaving a limited amount of items in the closet.
When I reread this, I feel a little apologetic for focusing on such apparent minutia, but then–these are the thoughts and activities that make up a large portion of my days.
Caregiving is not easy. One day may not be too difficult, but the cumulative effect is harder to cope with. P. always wants to help with chores, but sometimes it’s easier to do them myself than direct him through the task. Yes, I probably should be more patient. Yes, I should slow down and allow him the dignity of assisting with our daily chores. Each day I make choices anew, and that’s how I go forward, day by day.
Since 2015, I’ve been caring for my husband with vascular dementia. Yesterday morning, a wave of despair hit me, as happens sometimes. This particular drenching’s theme was my lack of freedom of movement. I haven’t been anywhere by myself since December 2019, when my husband’s son took him camping for a few days. That’s a year and a half, right?
So I began wandering mentally, testing the possibilities. What if, after we’re both vaccinated, I could find a reliable companion to give me a few hours’ respite each week? What if the social worker at the gerontologist’s office could link me up with a certified aide who would stay in our house for a week or so while I went away? By myself.
You see, traveling with my husband is no small undertaking. The flights and car rental are peanuts compared to the packing, the organizing of medication, and the actual keeping track of him in unfamiliar, crowded locations like airports. He is slow to grasp directions and to respond quickly when something needs to happen.
Plus, in public places, he tends to disappear without telling me. Usually, he’s heading for the public toilet, but he may decide to buy a candy bar or some hot tea. I turn around and he’s gone. Panic.
He wants to be in charge of his passport, debit card, cash. OK. But he can’t operate the gas pump anymore. How much autonomy is safe?
Do I even remember what it felt like to be alone in the house? To make choices without the parameters of his needs? To relax in my own company without the time constraints of medications and mealtimes?
My freedom is more restricted by having a reconstructed family. My kids aren’t his kids, so they can’t be expected to feel the same responsibility toward him that they might have toward me or their father. If we weren’t reblended by divorces, I might feel justified in saying, “It’s your turn to take care of your father. I need a break.” But I don’t.
This is just one of my early morning rants. If you’re a caregiver, you’ll get it. That’s why I look forward to my twice-a-month caregivers’ Zoom group. They get it. They have solutions I haven’t thought of.
And—several caregivers in the group are worse off than I am, taking care of someone who is belligerent or incontinent or suicidal. It puts my self-pity in perspective and helps me back to grace and gratitude.