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Illustration by April del Noche Milne

My husband is still fit and handsome; he still has his infectious smile. He takes no pills other than a puffer for maintenance of his asthma. Physically, he’s amazing. Sounds pretty good for a 94 year old, yes? Actually, no.

My husband suffers from vascular dementia. Every morning I wonder, will my husband be Mr. Sunshine or Mr. Grouch? Sometimes he is both. He can be friendly, angry, verbally abusive, affectionate, confused, fearful or happy. Before the pandemic, he attended a day program for those who suffer from dementia. He loved it, as did I. Three days a week, I was free for six hours. I could visit with friends, run errands, attend lectures, concerts or movies or chat with family and neighbours. I also had a personal support worker for an hour each weekday to help with his showers and shaving. My life was stressful, but manageable.

Now, I feel I am not living. I am trapped, as is he. COVID-19 has required me to make many adjustments. Because I’ve been afraid to use the PSWs, I’ve hired an aide I know personally to come several days a week for a few hours. Otherwise, I’m on duty 24/7.

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The bills my husband used to take care of are now my responsibility. Things disappear and reappear in strange places. I am constantly on a treasure hunt for sweaters, combs, spoons, the TV converter, even the telephone. I can’t leave him alone any more. He asks, "When can we go home? Do I have any money? These questions are sometimes repeated for over an hour. I try to distract him with music, poetry readings, TV or photo albums; that sometimes works, but when is doesn’t, I want to scream. Then I try to remember, it’s the disease talking.

I dread the nights. Preparation for bed is stressful. At times, he’ll say he’s too tired to brush his teeth or undress and becomes stubborn. Every night he wakes up two or three times to go to the bathroom Usually he can manage on his own, but he wakes me. Do I fall back asleep? Maybe. My mind circles endlessly as my husband sleeps on. How did I get trapped in this living nightmare? Why me?

Tired caregivers don’t think clearly; tired caregivers aren’t patient; tired caregivers may lose their temper. When my mood shifts, so does his. He shouts and swears at me. As I feel myself falling into a dark hole of despair, I remember what therapists call RAG – resentment, anger, guilt. It’s hard, but I try to stay calm. I force myself to remember, it’s the disease talking.

I have taken courses on dementia. We’re told that the caregiver has to come first. That sounds wonderful. I come first. Don’t I? It doesn’t always work that way. My husband is impatient; he resents my private time. He’ll say I’ve left him too long and rant and rage. I feel RAG. Then I tell myself, it’s the disease talking.

Are there any good moments during this ongoing nightmare? Yes. He likes to socialize with friends and strangers when we go for walks. He loves visits with siblings and our children and grandchildren. And when he chats briefly on the phone with our sons, he lights up. These moments are precious, but few and far between.

Do I sound depressed? I am often weepy; I think of the plans we once made for our future. I want my old life back. I want my old husband back. It’s wishful, useless thinking. Thankfully there are some funny moments, too. Once when we were walking, I told him it was time for tea and that I’d have a cup, too. He replied, “Can I have a cup three?” and chuckled.

Another time, while we were in an elevator, a couple came on. The woman was carrying a large purse with four zippers. One was open. My husband noticed it and said, “Your zipper is open.” The woman’s husband immediately looked down at his pants. We all had a good laugh.

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We both love music. He claps his hands or sings along. When Frank Sinatra sings New York, New York, I reach for him to get up, and he dances with me. This man who uses a walker is dancing right to the beat! He grins at me and holds me tight.

I like to remember these fun moments. When we watch TV he sometimes makes a funny comment. Lately, however, he thinks he is part of the program and may start shouting at the TV. There’s no point trying to figure out why. There is no logic to his behaviour.

I feel awful when he becomes confused and afraid. What must he be feeling when he says, “I want to be the person I used to be,” or “Something is wrong with my head.” I hate these brief, seemingly rational moments; they’re so painful. He wants me to be with him all the time. If I’m in another room, he’ll call out with a tinge of panic in his voice, “Glen, where are you?”

Sadly, I have become his memory. There is no cure, there is no happily ever after. We muddle on as best we can. The spectre of a long-term care home is lurking in the encroaching shadows. RAG. I still revert to these emotions, though I try to focus on his behaviour, not mine. When he lashes out, I know it’s the disease talking.

We recently celebrated our 64th wedding anniversary. I try to remember the good years and the happy times. When I wished my husband “Happy anniversary,” he smiled his cute smile and gave me a hug and a kiss.

Glenda Bocknek lives in Toronto.

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