Love and Alzheimers

When my son was in high school, he came home one afternoon all excited. He said there’s a new girl in class and I’m in, in and he paused, he was going to say love but he was too honest for that, he burst out I’m in lust with her. We all got a laugh out of that.

But what is love? Someone once said to me that the three most dangerous words in the English language are “I love you.”

I’m not sure what love is but I know I’ve observed it, not among the young who are pulsating with hormones, but among the elderly. When I first began to visit Betel because my mother was there, I saw a relative come every day to feed her husband and to wheel his bed outside. He couldn’t speak, he couldn’t move, but she sat with him and sometimes her daughter came and sat with her mother and father.

Every day in the good weather, I saw a man come to get his wife. They would sit outside on a bench, saying nothing but holding hands. Sometimes she would rest her head on his shoulder.

There’s another kind of love that is more diffuse, more general but it is still love. That is the love that brings a group of local singers to entertain at Happy Hour every Friday evening. Sometimes Oli Narfasson sings songs in Icelandic. No one gets paid. They sing the old songs that the residents will recognize. The residents come with walkers and in wheel chairs. The more fortunate ones make it on their own. My mother’s toes tap to the tunes. When the singers ask if there’s a song anyone wants, she always says “School days.” I expect that her school days were the happiest days of her life.

There is kindness in the way that people are brought to this happy hour. There is kindness in the singing. There is kindness in the offering of a soft drink. I think that is a kind of love.

Some residents never have a visitor. That is not necessarily neglect. Families are spread far apart. A friend of mine who is ninety-five says there is no one left whom she knows or who knows her. She’s outlived them all. The lucky ones are the ones who have relatives close by who come to visit regularly. You see them, maybe three people sitting at a table having tea and cake with a mother or father who is a resident. Or you see someone being bundled off into a car for a ride or a Sunday dinner.

These are the families who are not embarrassed or ashamed because someone in their family suffers from dementia. No one asks for dementia. No one says oh goody, I’m getting Alzheimer’s. It’s a disease with no cure. But then there are lots of diseases with no cure. Diabetes. Celiac disease. Primary bilary cirrhosis. There’s a whole host of them. All of them change our behaviour. Just as Alzheimer’s changes our behaviour. The difference with dementia is that the new behaviour is often bizarre. It is often hurtful because the victim of the disease no longer sees the world except through a distorted lens caused by changes in the brain. Eventually, many Alzheimer’s victims forget who even their closest family and friends are.

I’m not a doctor or a psychologist or a psychiatrist. I’m just a son. I don’t know how much of my mother’s fantasies are the result of Alzheimer’s and how much is because she has macular degeneration and can no longer read or play cards or do cross word puzzles or watch TV. I don’t know how much is because she is nearly deaf. Prisons punish prisoners by putting them in solitary confinement. Even healthy people hallucinate after awhile. I don’t know how much is because of medication, although Betel is wonderful because they don’t drug the residents to keep them from being a nuisance.

Once in awhile she knows me. How this miracle happens, I don’t know. She says Hi, Billy, and gives me a hug and I hug her back and greedily, I talk to her because for a time, I’ve got my mother back. It is like having someone whom you love who has died come back to life for an hour or two. I’ve learned not to go and get us tea because when I return, the miracle may be over. And I wish and I wish that somewhere there was someone who could discover how this miracle occurs so she could come back from her internal world to join me for more than a minute or an hour.

There is a terrible guilt that goes with being a caregiver, with having the authority of a Power of Attorney. The decision to seek a medical opinion on a loved one’s mental state is like a betrayal. The decision to take away someone’s access to their life’s savings is a betrayal. The decision to have their driver’s license cancelled is a betrayal. The decision to have them put into a nursing home is a decision filled not with relief but guilt. When you go to visit and they say “I want to go home.” And you say “This is your home now,” you feel dreadful and when they follow you to the door and you punch in the code and they get left behind because they wear a bracelet that closes the door so they can’t leave, you feel guilt. You are on the other side of the glass door. You can go anywhere you want. They are standing there, their hands against the glass watching you, wanting to go home to their kitchen, their bedroom. You feel like a failure. You ask yourself could I do more, could I still take care of them?

It is not all quiet tragedy. At least not in retrospect. Friends of mine were taking care of the wife’s grandmother. The grandmother was short, thin and had very pale white skin. Her wandering had reached a point where they had a lock with a code on the front and back door. One day the door got left ajar and the grandmother, clad only in a bra and panties fled down the stairs and along an exclusive street in Oak Bay. Her grandson-in-law is big–think football linebacker—and partly native so he’s swarthy. Grandma got a good head start and as she ran, she screamed help, help me, I’m being kidnapped. Behind her, her grandson-in-law was running as fast as he could. A block from the house he finally caught her, picked her up and tucked her under one arm. She kicked and waved her arms and screamed for help the whole way back. It was a difficult moment but now, some years later, it is a story that brings wry knowing smiles because many of us have had similar experiences.

What’s love? Chasing a grandmother- in-law down a tony street and not worrying about what it looks like. Making decisions for someone who no longer can make them for themselves. Never taking advantage of a person no longer able to make good decisions. Putting their welfare ahead of your own feelings of guilt. Not forgetting someone once they’re in an institution. Making time for them even when they don’t know you. Remembering the way they were before being afflicted by a terrible disease. Not being ashamed of them. There are many ways to love someone.

My son was right. It wasn’t love he was feeling. Love requires giving and expecting nothing in return.