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?
For this memoir, I’ll take the third person. It’s informative for me to view the events from an observer’s distance. I’ll be Joy, and my husband will be Phil.
Back in the early 2000s, Joy and Phil were busy professionals. Joy worked full-time teaching English as a New Language (ENL). She wrote columns for the union newsletter and other publications. Phil had two offices for his hypnosis clients, one at home and one in Monroe. When he wasn’t helping people quit smoking or lose weight or eliminate phobias, he was spreading his brochures around Orange and Ulster Counties. He often had appointments at night, which suited Joy just fine, as she liked to have the house to herself after work.
If Joy had been less busy and more alert, she might have wondered about the books Phil kept buying: Improve Your Memory books. Train Your Brain books. And the supplements on the counter: Brain boosters. Joy knew that Phil’s mother had died of Alzheimer’s disease, in a slow decline until reaching the age of ninety. Phil never expressed any fears about his own health, but the books spoke for him. Joy wasn’t attending.
Joy retired in 2011. Phil took time off for them to travel and visit family in Italy. When they got back, Phil started having trouble with his schedule. He missed a few appointments. Joy found out that Phil had been seeing a neurologist who called Phil’s issue, “memory loss.” A year and a few tests later it was an official diagnosis: mild vascular dementia.
The neurologist ordered a driving test. Phil was incensed. “There’s nothing wrong with my driving!” But there was. He made left turns in front of oncoming cars. He drove too fast and too close. Phil failed the driving test. “It’s that woman’s fault,” he complained, blaming the examiner.
Joy took over the driving. Fortunately, in spite of his indignation, Phil didn’t try to take the car keys and leave. He didn’t argue about who was to drive. So perhaps Phil felt insecure about his own abilities.
When they visited family in Spain for some weeks, Joy did all the packing. Phil could no longer organize himself to complete tasks like choosing what clothes to take or ordering additional medications from the pharmacy. They argued about Phil carrying his own passport and plane tickets. Joy was afraid he’d misplace them, as he often misplaced his wallet and phone. They settled it with a pouch around Phil’s neck. It was up to Joy to make sure he put it on every morning.
Phil stopped working after that trip to Spain. He could no longer do the jobs needed to maintain the four-bedroom house, and Joy was tired of the additional responsibility. They moved to a two-bedroom apartment. Phil was unhappy that his tool collection was downsized and sent to a storage unit. There was no need for a lawn mower or a weed-whacker. He stopped initiating new activities or new conversation and spent most of his time rereading magazines or doing crossword puzzles.
Each month and week, Joy noted more losses. He couldn’t remember where the utensils and dishes were in the kitchen, so she labeled the drawers and cabinets. He didn’t know which clothes were appropriate for the weather. Joy chose his outfit each morning. Phil couldn’t remember which pills he’d taken or whether he’d taken any at all. Joy took over medications and supplements, putting them out in a cup at breakfast.
Phil asked sad questions, like “What’s your daughter’s name?” and “Was I married to her?” (Maddie, his first wife). If requested to get something from another room, Phil would forget what it was he had to bring.
Joy was in despair. For her, each day was Groundhog Day. Everything was on repeat: the directions needed for daily routines, the comments he made about the food, the weather, the houseplants. “Thank you for making breakfast,” said three times.
Joy boomeranged from frustration to anger to guilt to sorrow in an endless loop. If she yelled at him, she felt awful. He was, in spite of everything, a sweet-tempered, loving man. Phil lived in the present, and while each experience was fresh for him, Joy felt buried in dullness.
And then came the Corona Virus. And it all got worse. Cut off from social interaction, Phil lost more of his cognition. Joy entertained herself with jigsaw puzzles and sewing projects and Zoom meetings. But times were hard.
(reposted from November, 2020 on tangledmagic.blog)
Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is–laugh.
Yesterday, I was cleaning out files. The box of paper to be recycled was overflowing. My husband wandered upstairs to check in.
“Can I do anything to help you?” he asked, as he often does. (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)
“Well, yes,” I answered. “I need a large garbage bag for these papers.”
“Where are the bags?” he asked. (Are you paying attention? Most spouses would know where to find the garbage bags.)
I told him, “In the cabinet to the left of the sink. They’re in a box under the medium sized bags.” I illustrated the size spreading my arms. “About this big.”
He turned to go on his errand. Stopped. “What am I getting?”
“A large garbage bag.”
“Where are they?”
I told him again. (By this time, I’m already thinking I should go get the bag myself. But he wants so badly to be helpful.)
He made little grunts as he went downstairs–his arthritic knees complaining.
He was gone a while. I moved on to thinning out the notes pinned to my bulletin board.
He came back holding—
three packages of snacks!!
Chip Ahoys. Cheddar rice cakes. Fig Newtons.
“Is this what you wanted?” he asked.
I looked at the snacks. I looked at his face. This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)
What could I do? I laughed and hugged him hard and long.
Then I took the snacks and went downstairs to get the garbage bag.
Caregiving is challenging. That’s why I value my caregiver group. We Zoom twice a month. These are the women who understand. Who often can offer resources to assist with a problem.
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.
Tangled Mind 