Families and dementia

The first time he accused me of stealing from him, he was lying on his bed reading The Northern Miner. “You stole my credit union statement,” he said.

I thought he was joking. I had Power of Attorney and could look at his accounts at any time. I had no need or reason to steal his monthly statement. “That’s what happens with some sons,” he said bitterly and turned back to his paper.

I said, “I never stole your credit union statement. How would I steal it?”

“I went to the Credit Union and it wasn’t there.”

“Jack probably picked it up.” His brother Jack often picked up his statements or his mail for him.

“You stole it,” he said. I called his brother. Sure enough, he’d picked up the statement. He told my father he’d picked up the statement. He came over and handed him the state­ment. “It’s a copy,” my father said. “It’s not an original.”

Dementia sneaks up on people. Someone you’ve known all your life and con­sider their behaviour stable, predictable, slowly, gradually, begins to change. There’s no way to see that their brain is getting less oxygen. The dis­ease is invisible. There’s the forgetfulness, of course, but people mistake forgetfulness with dementia. If you forget your car keys, that’s forgetful­ness. If you forget what the car key is for, that’s dementia. But long before you forget what a car key is used for the dis­ease has begun to change your behaviour. And the people around you still think that you are the same person they’ve known all their lives.

I was so furious over my fa­ther’s accusing me of stealing his credit union statements that I called West Jet and changed my flight from a month later to the next day. For the first time in our lives, my father and I parted with anger and raised voices. When I got home I wrote to the family lawyer say­ing that I refused to continue as my parents’ power of attorney and executor. Both positions require absolute trust between the two parties.

A month later my Uncle Jack called and said my father and he wanted me to continue in both positions. It took a lot of persuading but, finally, I agreed. It was an agreement that I came to regret.

Power of Attorney. POA. Everyone needs to designate someone as their POA. Oth­erwise the government steps in and time and again that has turned into a nightmare as face­less civil servants take over as­sets, sell off belongings, decide what the individual may or may not have. And charge for it.

Years before the incident over the credit union statement my parents had announced over lunch that at two o’clock we were going to see the family lawyer and they wanted me to sign documents making me their power of attorney. Sure, I said, blithely, never having heard of Power of Attorney before. It never occurred to me that I should have insisted on showing the documents to my own law­yer and have her explain what was involved and what should be modified in the agreement to protect my interests.

As Power of Attorney I had the right, once my parents became incapable of manag­ing their affairs, of taking over their bank accounts, their in­vestments, their rental property, even their home. I could keep them from having access to their assets. My duty was to act for their benefit as they would act for themselves. Easier said than done since people in the early stages of dementia don’t believe there’s anything wrong with them. Even people in the later stages will protest that they’re quite capable of taking care of their affairs. When my father was in Betel and no lon­ger could remember how to use the telephone, he still insisted that he wanted to trade penny stocks on the Vancouver Ex­change. Who was going to tell him no. After all, they could rightly argue that he was just doing what he’d been doing for close to seventy years.

One of the common ele­ments of dementia is paranoia. That paranoia is usually fo­cused on someone close, some­one with authority. While other behaviour may continue to be, or appear to be, quite normal, the person with paranoia inter­prets everything that the person of authority does in a paranoid way. A friend of mine had a call from her mother saying that her father was behaving strangely. He’d stopped eating anything she cooked. My friend went over the next morning at break­fast time. Her father was sitting with a bowl of porridge in front of him. “Why aren’t you eating your porridge? “she asked. He shuffled and looked away from her. “Is there something wrong with the porridge?” He didn’t reply. “If you don’t want it, I’ll eat it. I haven’t had breakfast.” She took the porridge bowl and dipped in the spoon. “You’re not going to eat that”, he burst out. “Why not?” she replied. “Do you think Mom’s trying to poison you?” She ate a couple of spoonfuls. “Why would she want to poison you?” Sheep­ishly, he took back the bowl. He had believed that his wife of decades was trying to poison him. When my father came to stay with me, as a courtesy, I served him first, then myself. He was, after all, both my fa­ther and my guest. But then I noticed he didn’t drink his cof­fee until I’d taken a drink of mine. He didn’t start eating his bacon and eggs until I started to eat mine and that was when I remembered my friend’s expe­rience with her father.

It is a long, hard road filled with pain as one deals with a parent or spouse who begins to behave in ways that are hurtful and illogical. They are, after all, the same person one has dealt with for most if not an en­tire lifetime.

At first, the changes are often subtle and are misinterpreted.

After my mother went into Betel, my father called me and in a dramatic, passionate phone call worthy of a melodrama asked if he could come to live with me. What could have been a one sentence request, “Is it all right if I come and live with you?” became a half hour of begging, pleading, manipulating. At the end of the call, I said sure, fine, I’ve got everything all organized in case you wanted to come to live here. I flew to Gimli. We flew back to Victoria and on the flight he was his usual charming self, even in his eighties drawing the stewardesses to him with his ready smile, his compliments and anecdotes.

It started off well. People came to visit and he always loved an audience. But then things began to go awry. One day he said he was going to walk to the mall which is about five blocks away. He’s always loved window shopping. He could spend hours wandering in and out of stores. However, today was Thanksgiving and we were to go to my nephew’s for Thanksgiving supper. Sup­per time came and went and there was no sign of my father. I walked to the mall. I searched inside and outside the mall. I came home and called my nephew who lives in Sidney.

“Sean,” I said, “your grand­father is missing. I can’t find him. Can you come and help me search?”

He jumped in his truck and started for Victoria. He was half way here when his wife called him on his cell phone and said, “Grandpa phoned me. He is on the transit bus and he’s getting off at the highway bus stop. I’ve got to go. Come back. I’ll phone Uncle Billy.”

She threw the two kids into the van and raced to the high­way. She stood at the bus stop, spotted my father’s homburg on the bus and started waving wildly. He got off quite non­chalantly. This man who had lived in the country and in the wilderness, who had hardly ever been on a transit bus, had walked to the mall, had asked someone how to take a bus downtown, had asked someone downtown how to take a bus to Sidney, thirty miles away. As the bus approached Sidney, my father asked one of the passen­gers if he had a cell phone. The passenger did and called the number my father gave him.

By the time I arrived, Thanksgiving supper was over. I ate reheated turkey. My father sat on the couch as if nothing unusual had happened. When I said it was time to go, he re­plied that he was going to stay the night at his grandson’s. I pointed out that they had a small house and no spare bed­room. Reluctantly, he came back with me.

Things seemed stable for a few days but then my niece, whom he loved dearly, was to come for a visit. They had a very special relationship be­cause my father and mother had helped to bring up her and her brother after their father was killed in an industrial accident in northern Canada. My father talked repeatedly about the fact that Kim was coming to visit.

The day she was to arrive, he got all dressed up in his pearl grey suit. He started out the door when I said, “Don’t leave now. Kim will be here in fifteen minutes.”

I’m just going for a walk,” he replied. I expected that he would walk up the hill to the end of the street, then walk back. Kim arrived but there was no sign of my father. Sup­per time came. We went to the gate to look up our dead end street. We looked down the main street that ran by the house. While Kim stayed at the house in case he turned up, I went searching. Up and down the streets of the neighbour­hood. Back to the house. Over to the mall. It began to get dark; it started to rain and in despair, I called the Saanich police and asked them to put out an APB on him. I called the hospitals. Then all we could do was wait and hope.

An hour passed, then two. I kept going to the front door to look out. We were having a cup of tea when there was a knock on the door. To my re­lief there he was between two policemen. Except my relief didn’t last. One of the police­men wanted to know my name, my father’s name, our relation­ship, then he said, “Your father says you’ve stolen all his mon­ey and he’s come to Victoria to get it back.” That started a half hour interrogation.

Elder abuse is common in Victoria. There are a lot of elderly to be abused. There are lots of people prepared to abuse them. When the police were satisfied that my father’s money hadn’t been stolen – I offered to show them my POA and his credit union statements – they left but not before in­forming me that they’d found my father downtown at Eaton’s Centre with six hundred dol­lars in his hand. He hadn’t been picked up because of the APB. Eaton’s security had noticed that he was confused, saw the money and whisked him into a safe area. I went to the kitch­en table and started to have tea with my father and niece. There was a knock on the door. The previous police were from the Victoria force. Now there was a Saanich officer and a so­cial worker. I invited them in. My father sat silent as we went through the same routine once again. They, too, left. Once they were gone, I said to my father, “Why did you say I’d stolen your money.” He smiled and said, “I didn’t want to have to pay for a taxi.”

Living with a bachelor like me isn’t very interesting. My routine is pretty predictable and boring. Because of this I tried to take him somewhere every two or three days, not any place special, Home Hard­ware or WalMart, just some­where to give him a chance to get out of the house. The night I took him to Home Hardware, I should have begun to realize that something odd was going on. In the past, he’d have spent hours walking the aisles, look­ing at everything there was for sale. But this night there was no doing the man-thing look­ing at tools. He’d always loved to window shop. However, ev­ery time I went to search for something, he followed me and when I suggested he have a cup of coffee he only moved to follow me from a distance. It wasn’t until Halloween when the penny dropped. The Gov­ernor General’s residence was decorated with pumpkins lined along the driveway. The pump­kins were carved in the like­ness of famous people from all walks of life. There were Hollywood actors and cartoon characters, politicians. People came by the thousands to oooh and aw.

I told him we’d go to see them. I thought he’d be enter­tained. It would give us some­thing to talk about. When we left for the GG’s, it was night time and he didn’t know Vic­toria well even in daylight. At night it was a complete mys­tery. More than once, he said to me, “Where are we going?” He sounded nervous. I explained once again about the pumpkins. When we arrived there was no place to park so I dropped him off at the gate and told him to wait there for me

It took awhile to find an empty parking space and by the time I got back my father was shaking so hard he couldn’t stop. It was then I realized that he was afraid and what he was afraid of was that I was going to leave him and disappear. My heart sunk. All the evenings out I’d planned to keep him entertained had been a night­mare for him. Instead of amus­ing him, they’d terrified him. After his mother died when he was twelve, his father had taken him to the city to visit his aunt. She had no children and she’d offered to take my fa­ther since my grandfather was now left with four children. Except they never told my fa­ther what they’d planned. He thought they’d go for coffee, then return to Gimli. Instead, my father was left behind at his aunt’s. I wondered as I drove home about what was going on in his mind that he could mix me up with his father leaving him behind. He’d left Gimli on both occasions. He’d gone to the city on both occasions. But many decades had passed. Later, though, on a number of occasions, when asked who I was, he replied, “This is my father.” When asked by a psy­chiatric nurse what our rela­tionship was, he said, “He’s my father.”

I thought my heart would break when I realized that ev­erything I had done to make things better for him had made him afraid. That this man who risked his life time and again without a second thought as he fished on Lake Winnipeg, who would, his brother Jack said “rather fight than eat”, could be reduced to shaking fear be­cause he thought he might de­liberately be left behind was devastating.

This, no longer was my fa­ther. Some stranger had taken over his mind. Nothing I did could be or would be interpret­ed in a normal fashion. Every action would be seen through the terrifying lens of paranoia.

After a life time’s relationship with my father, I now was dealing with someone I no longer knew.


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