Alzheimer's (eBook)

Chapter One

Bruised Reeds and Dimly Burning Wicks

Muriel sat down at the kitchen table and slowly buttered her toast. Fifteen minutes of silence, twenty if she was lucky. Quiet time alone to enjoy the toast, a cup of coffee, and a quick read through the morning paper before the real work began: getting her mother up, washed, fed, toileted, walked and dressed for the day. And then, later in the morning, several loads of laundry including her mother’s urine-stained sheets.

‘Bye, Mum,’ Susan shouted as she grabbed her books and headed out of the door to catch the school bus.

‘Bye,’ yelled Bruce, scooping up his rucksack and racing past his sister.

Muriel glanced out of the window and caught a glimpse of the bus as it rounded the curve and disappeared out of sight beyond the hedgerow.

The school term would be over in a few weeks. Unfortunately, Muriel knew the children weren’t looking forward to being home all summer. When she’d asked them they said they didn’t mind, but her neighbour had told her the truth. When the neighbour had asked Susan how she was going to spend her summer holiday, Susan had just shrugged her shoulders and looked unhappy. And Bruce said, ‘We aren’t going anywhere because of Grandma.’

‘Mur. Mur.’

‘Ten of my twenty minutes wasted thinking about something I can’t do anything about,’ Muriel thought.

‘Mur. Mur.’

‘In a minute, Mother,’ Muriel called back, hastily swallowing the last of the coffee, running her plate under the tap and shoving it into the dishwasher.

Ruth. Muriel’s mother. Ruth was the reason the children weren’t looking forward to their summer holiday.

Muriel couldn’t blame them. It wasn’t easy being thirteen and seven and having a grandparent with Alzheimer’s disease living with you twenty-four hours a day. A grandmother who didn’t do the things grandmothers were supposed to do – like tell you what adorable grandchildren you were, listen to your stories and bake you biscuits. A grandmother who, instead, sometimes threatened you and didn’t even know your name, babbled incoherently at times, and had almost burned your house down trying to boil an egg.

Muriel’s father had died fifteen years earlier, and her mother never remarried. Ruth continued to live alone in the old family farmhouse, three miles from Muriel, Carl and the children. At age sixty-five, Ruth had begun to show signs of memory loss, but the signs were so subtle that Muriel had hardly noticed them.

Her mother was for ever losing things: her glasses, her cheque book, her keys. When Muriel would drop in unexpectedly she’d often find Ruth rummaging through drawers, muttering under her breath. But then, for as long as Muriel could remember, her mother had misplaced things.

Then her mother stopped remembering.

Birthdays were first. Muriel’s. Carl’s. Susan’s. Bruce’s. Her own. Very unlike the mother who had never failed to send a card, buy a present or bake a cake.

Appointments were next. The dentist, hairdresser, chiropodist – all were forgotten. Muriel had calls from all three of them one month asking where Ruth was.

Muriel’s mother had notes posted all over the house. ‘Memory joggers,’ Ruth called them. But she still forgot.

And then there were names. Odd, Muriel had thought, that her mother couldn’t seem to remember the names of the children one Sunday when she was over for dinner. Ruth kept calling them Sally and Ron, the names of her own sister and brother. The children thought it was a game Grandma was playing. Muriel wasn’t so sure.

It was Muriel’s husband, Carl, who first realized there was more wrong with Ruth than simple age-related memory loss.

Carl stopped by the farm one morning to get Ruth’s grocery list and found his mother-in-law taking a nap in a smoke-filled house. She had put a fruit cake in the oven, turned the oven on high and gone to sleep. The smoke detector was working, but Ruth had removed her hearing aid and, as she told them later, had forgotten where she put it. A look in the kitchen cupboards revealed more black-bottomed cake tins and saucepans, ample evidence that cooking was one task Ruth could no longer accomplish safely.

The final straw came several weeks later when Muriel got a phone call. Ruth was at the post office in town, having walked for two miles in the rain. She insisted she was in the bank, wanted to see the balance on her account, and demanded her money. Could Muriel please come and get her mother, asked the postmistress.

Muriel did. She got Ruth, took her home to the farm and started packing.

Moving hadn’t been easy. Ruth became even more confused and disoriented in the new environment. She accused Muriel and Carl of stealing her money and selling the family farm.

The children, then aged ten and four, were a mixed blessing as far as Ruth was concerned. Sometimes she showered them with affection, and they basked in the attention. At other times they were also part of the supposed conspiracy to confiscate her property.

Bruce seemed to go with the flow of Grandma’s mood swings, but Susan, who had known the love of a more stable grandmother, had a difficult time accepting the bizarre behaviour patterns that emerged. When Ruth had one of her verbal outbursts, Susan would run to her own room and stay there until her mother or father assured her the coast was clear.

Now, three years later, Ruth’s paranoia was gone, but Susan’s habit of retreat remained. Muriel hoped Susan would outgrow it. And she wished she didn’t feel so guilty about the children.

‘Mur. Mur,’ Ruth called from the bedroom, the room Susan had given up when her grandmother moved in.

‘Coming, Mother,’ Muriel called, as she dried her hands on the tea towel and turned to go upstairs.

Alzheimer’s: A Family Affair

This book is certainly not the first word on Alzheimer’s disease, nor will it be the last. Rather it is one voice in a chorus speaking out about a devastating illness affecting the daily lives of millions of people worldwide. People like Muriel and Ruth. People like my mother and your mother, our fathers, husbands, wives, children. The cared for and the carers. The loved ones and those who love.

I am a writer, a registered nurse and a teacher. I have also been a carer. Over thirty years of hospital, nursing home and home-nursing experience have brought me in contact with many other carers and their loved ones. But my own mother brought the reality of Alzheimer’s home. In 1980 she was diagnosed with senile dementia of the Alzheimer’s type, and I was able to experience caregiving firsthand for over ten years, from the time I first moved home to help my father cope until her death in a nursing home. In 1989 I decided it was time to write about the things my mother was teaching me and the things I was learning from other carers.

After my mother’s death I both worked and volunteered in a number of special care dementia units in the United States and Canada. This book tells the story of Alzheimer’s from the varying perspectives of my life and work.

The scenarios that introduce various chapters in this book are based on the lives of many carers including myself. In them I’ve tried to weave together experiences, reminiscences and feelings to paint a picture of what Alzheimer’s is really like.

This book is primarily for carers like myself – those who live with loved ones, visit them in nursing homes and various types of sheltered and residential care facilities, or show care and concern from afar. I also hope it will be of value to professional and voluntary carers who recognize illness as a family affair. And, too, I wrote it for friends. Without them, caring would be a very lonely experience.

In addition to drawing from my own experience and current research and literature, I interviewed dozens of carers who gave me permission to quote them. This gave direction for chapter topics and helped me focus on some primary concerns. The inclusion of appendices was designed with the professional carer in mind and for family carers wanting additional sources of more detailed information about current research and medication.

Whenever people talk about Alzheimer’s, certain questions come up:

• How can I tell if my loved one has Alzheimer’s? What are the early signs and symptoms?

• What causes Alzheimer’s disease? Is it hereditary?

• How can I be sure my friend or relative is getting an accurate diagnosis? What’s involved in the diagnostic process?

• What are some of the bizarre and bewildering behaviours peculiar to Alzheimer’s disease? How can I manage them?

• Is there any specific treatment or cure?

• What’s the purpose of all this suffering?

• How can I meet my own needs as a wife, husband, daughter, son?

• Is it normal for me to feel angry, guilty, depressed or resentful? How can I deal with these emotions?

• How can I deal with my loved one’s physical needs?

• What kinds of resources are available to help care for my loved one at home? How can I find and pay for this care?

• How can a person decide to place a loved one in a nursing home? Is there ever a right time?

• Are brain post-mortems important? How...