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.

Alzheimer’s and Kindness

Today, when I went to visit the nursing home where both my parents currently live, I discovered my mother in the doorway of her bathroom entangled in her nightgown. She was naked from the waist up and unable to find the appropriate holes for her head and arms.

“Help me,” she said but I don’t think she had any idea she was speaking to her son.

I’m not used to idea of finding my mother half-naked and confused, of having to help her with this simplest of tasks. Normally a nurse would magically appear to take over but today the hall is empty. I managed to straighten out the nightgown, to get her arms and head into the right places.

“Take off my pants,” she said and went and sat on the edge of her bed. I pulled of her shoes and slacks and pulled down her nightgown.

My father had appeared from his room. “This is crazy,” he said and turned and left. There are no double rooms so my parents, although t hey are married sixty-eight years, are living separately. Few couples come here. Nearly all the residents are women, widows who sit in lines close to the exit, wearing bracelets that lock the doors automatically if they try to leave.

My mother tried to pull back her blanket but couldn’t for along with Alzheimer’s she has macular degeneration and, therefore, only peripheral vision. I pulled back the blanket, helped her into bed where she curled up into a fetal position. I covered her and, although it was only three thirty in the afternoon, wished her good night.

This, for the young readers who believe no such fate could come their way, was a woman who was a credit union manager for twenty-two years, who sold insurance, who regularly braved northern winter roads to bring supplies to my father at his commercial fish camp.

My mother loves this nursing home, or loved it, when she was still aware. She wanted to come here and quickly joined in the activities. She looked forward to volunteering for folding face cloths. She enjoyed Friday night happy hours, the church services, the mind games, the physical exercises, the company of other women.

My father, on the other hand, hates it here. He came unwillingly, driven in by his inability to live alone or with anyone else. Before he came here his paranoid dementia brought him to my home half a continent away in Victoria, then after he became convinced that I had stolen his morphine pills, his money, was trying to poison him, had listening devices in all the walls, his paranoia drove him away. Unable to live on his own, he raged against having to move into a care facility. He refuses to participate. He goes into rants over the food. He particularly despises pasta.

He has good days and bad days. On the good days I have my father back, not the charming, amusing man most people, including me, remember but, at least a person who is rational and can talk knowledgeably about his great passion, the penny stock market. Most of the time he is angry. The morphine he has to take to control the pain from a shattered vertebra increases the paranoia but he can’t get by without it. It’s a fine balance. Enough drugs to control the pain but not too much that would mean he sleeps all the time.

There is a resident here who just celebrated his one hundred and fifth birthday. “I don’t want to be like that,” my father says. He is agitated. He is lying on his bed. He swings his legs over the side, picks up his cane, starts to stand up, lies down again. He repeats this motion over and over again, only occasionally standing up and walking as far as the door of his room, then back. “I want to die.”

“I want to die. I want to die.” I hear this refrain over and over again but he also wants to see the doctor every Friday when the doctor comes to visit.

Shortly after I arrived at the beginning of June, my father had a fall. The nursing home called and I immediately went there. There’d been a bed check at five a.m. At six forty-five he’d rung the emergency bell.

“I don’t know what happened,” he said. He’s a mess. His face is cut from his right eye to well down his cheek. His arm is broken. His hand is unrecognizable. It is a swollen lump like half a black cantelope. “I woke up and I was lying on the floor. I kept trying to get up and kept slipping. I thought it was water.” It wasn’t. He was slipping in his own blood.

He can stand more pain than any other person I’ve known. He once was on the road to his fish camp. He heard a car coming very fast on the gravel. He ran to the front of his car but before he could get any further a car came around the curve and rammed into the rear of his car, knocking him onto his back and driving his car over him. It ran up one leg and ended with a front tire on his chest. The driver and passenger thought he was dead. When they saw he wasn’t, they lifted the front end of the car off him. He

was paralyzed and couldn’t move. They put the car down, the driver lifted the front end and the passenger pulled him free. By the time help arrived, my father was sitting in his own vehicle and refused to go to the hospital. He did, however, go to the hospital three days later because of the pain. His leg looked like an overripe banana and had a crack in the bone.

No sissy, this guy.

They bandage his face and put a tensor bandage on his arm. He doesn’t complain. However, in the days to come, he is convinced that his injuries are the result of a beating. “I couldn’t have got hurt like that from falling out of bed,” he says, completely forgetting that he was found at the entrance to the washroom. The most likely cause was a TIA, a small stroke that often presages a larger one.

I come every day. I bring mr. big chocolate bars, jelly beans, licorice all sorts, bags of bulk cookies from SuperA. I’d bring gold and silver if it would help.

I nearly always bring Chico Bandito, my chihauhau because Chico loves to be patted and praised. For many here, a chance to pat a dog is the only opportunity to express physical affection. I’ve learned to say hello to everyone because while my parents have many visitors, some residents have none.

This morning, I picked up my aunt Florence and we drove to Selkirk to Gilbart’s funeral home. My parents want to be cremated. My mother wants her ashes buried in her mother’s grave. My father wants his ashes buried in my mother’s father’s grave. They’ve left clear instructions in their wills.

I’m a bit hesitant about preplanning. I don’t want to feel like I’m rushing my parents toward death. But we plan many things– marriages, pregnancies, christenings, educations–why not this? With the undertaker, I discuss the details of picking up bodies, of cremation,

of services then, with my aunt’s help, pick out two urns. A flowered one for my mother because the pattern reminds me of one of her favorite dresses. Seagulls on a blue background for my father because on his boat on Lake Winnipeg with blue sky above and blue water beneath, he always was happy. I think everything is done when I make out a cheque but I’ve forgotten my parents’ social insurance numbers. I promise to telephone with them as soon as I get home.

Later, when I’m back at the nursing home, I see a nurse bring my father his pills and, sitting

beside him on the bed while he takes them, rub his back and quietly tell him he’s doing just fine. My mother, awake for awhile, has had a good day because she participated in the face cloth folding where she can visit and still feel useful.

This is a place filled with tragedy but tragedy softened by kindness and compassion and, I realize, that those are two of the many things this place has taught me.

To change the world is impossible but to say hello, to lift a chihauhau into someone’s lap,

to accept my mother’s nakedness and help her dress, to hate my father’s paranoia but not my father, to take on the role of decision maker, these I can do to make the world a better place..

First published in Logberg-Heimskringla

Canada’s oldest ethnic newspaper

100-283 Portage Ave., Winnipeg, Manitoba R3B2B5

lh@lh-inc.ca