Patricia Ekstrom has moved back home to take care of her mother. Eleanor has mild to moderate Alzheimer’s disease, and there’s a good reason why Patricia understands the job that lies ahead.
The front door of the small house in Albany opens into a room that tells you a great deal about the person who lives there. Photos from decades of graduations, weddings and baptisms crowd the walls. A doll collection fills the shelves next to the TV, a blanket that one daughter crocheted long ago is draped over the armchair, and on your way to the kitchen you pass a series of plates featuring Betty Boop, the cartoon character who was everybody’s darling in the 1930s. At 85, Eleanor lives in this house with her memories, and things she’s hung onto since she first moved here as a young wife.
Eleanor detests her cane and doesn’t use it unless her daughter Patricia reminds her. A couple of years ago, she started having falls. The stairs that her husband, long since deceased, had built of knotty pine became too dangerous. There was something else that also worried Patricia, even though she tried not to think about it, but one night she could ignore it no longer. A police officer called to inform her that he was holding her mother in custody at the police station – not in Albany, but in Massachusetts, an hour’s drive away. Eleanor had lost her way, and the officer had pulled her over because she was driving around randomly after dark and without lights. “Thank God you did!” Patricia exclaimed. Eleanor loved driving, but recently she’d seemed oddly hesitant behind the wheel.
After that night, Patricia took her mother to a neurologist, who gave her the diagnosis that had already occurred to Patricia. Eleanor had to relinquish her car keys, much against her will. She still isn’t completely convinced that she suffers from any disability. “Everybody forgets,” she says. “That’s life – what can you do?” Yet Eleanor does have mild to moderate Alzheimer’s disease, and Patricia’s moved home to be with her.
Demanding tasks lie ahead
Patricia knows what awaits her mother better than most, because she’s been looking after Alzheimer’s patients in a nursing home for years. For the time being, Eleanor can be home alone while Patricia’s at work. Eleanor keeps off the stairs, and she isn’t overwhelmed by the many components of a task like taking a shower – undressing and turning on the tap, adjusting the temperature, washing and drying herself off, opening the drawer with clean underwear. She looks forward to her weekly lunch date with her older sister and recognizes every face in family photos. The disease has primarily attacked her short-term memory and overall perspective. But the day will come, Patricia says, when she’ll remove the knobs from the stove, and when she’ll change Eleanor’s nappies because her mother no longer knows how to use the toilet. Demanding tasks lie ahead, but Eleanor isn’t going to go into a nursing home. Not if it’s up to Patricia.
She would fear for her mother’s dignity.
Working at a nursing home is a tough job. The heavy lifting wears on the body, and the gloomy atmosphere weighs on the mind. The old people there are often distraught. What’s the point in living, they lament. Their families have forgotten them, and they’re of no use to anyone. Sometimes, Patricia says, the exhausted aides end up shouting back at the residents, or handle them roughly, or can’t deal with it when a resident strikes out in a burst of anger. You have to try not to take it personally, she says, for violent reactions are part of Alzheimer’s disease. Perhaps you made a sudden movement or did something that startled the person. Patricia tries to be a calming influence when things get agitated.
And when residents grow disconsolate, she tells them that there’s a reason they’re still alive, for otherwise “the man upstairs” would have taken them home. And the reason for living right now is to smile at each other, and she clowns around a bit to tease out those smiles. The administration has stated that staff should avoid forming attachments to residents. Patricia turns a deaf ear. She knows that human connection makes a difference. Even when the disease is advanced, people with Alzheimer’s disease will recoil if you’re hard on them – and calm down when you touch them gently. They are human beings to the very end, Patricia says, and they still like being stroked on the cheek.
She kept her sense of humour
Once, Patricia’s mother was the sort of woman you went to see for good advice – if you were prepared to hear the truth. Bowling was one of her great pleasures. And though her husband was king of the castle, she was strong-willed. When he wanted to kick Patricia out of the house because she’d gotten pregnant, Eleanor stood her ground. “If she leaves, I’m leaving with her,” she said, and that’s something her daughter will never forget. Patricia remained in the small house and had a boy, who is now in the military; Eleanor helped her raise him. Photos of that Eleanor hang on the wall. Now she can’t keep track of which month it is or the name of the president. Yet she’s kept her sense of humour. Recently, Patricia was driving in a roundabout and kept missing their turnoff, and with a glint in her eye, Eleanor said, “So – now you’re driving like me?”
Patricia tries to hang on to those sorts of moments, before that woman drifts away too. But no matter how much of her mother the Alzheimer’s disease succeeds in taking, she knows that Eleanor will be able to feel how others are treating her. That’s why Patricia is determined to care for her herself. “If you think of another human being as a burden,” she says, “you’ll treat them as a burden. And that’s not okay.” As for Eleanor, she isn’t concerned about the future.
Every morning she places her favourite doll upon the bed, and only a single crack in its china face indicates that she’s had it since she was a small girl. Back then, it was her friend, comforting her when she felt lonely. The porcelain cheeks still have a fresh glow, and Eleanor says the secret is to rub them with a bit of butter. The doll in the red velvet dress used to have a name.
Eleanor can’t remember it anymore, but that doesn’t bother her. Every morning, she chats with the doll, just as she has done for years.
“Good morning!” she says. “You’re looking good today!”
Lives with her mother in Albany, New York, USA.
Certified nursing assistant at a nursing home, where she looks after Alzheimer’s patients.
One son, two grandchildren
My hopes for my mother’s future
I hope she goes peacefully, before things get too bad.
My fears about my mother’s future
I fear she will suffer, and she doesn’t deserve that.
My plan for when my mother’s alzheimer’s disease progresses
The state of New York has a caregiver programme for people who take care of relatives at home. When my mother needs full-time care, I’m planning to quit my job and take advantage of that possibility.
One thing people with healthy parents don’t realize about having a parent with Alzheimer’s Disease
You’ve been spared having to watch a parent deteriorate. Consider yourself blessed.
My advice for caregivers in my situation
You need to make some time for yourself. I have a few very close friends I can talk to, neighbourhood people I grew up with. Thursday is my evening off and we meet up for cocktails. I also have a special spot in the yard, behind the garage, where I go to sit when I need to be alone.
Eleanor Ekstrom, Patricia’s mother
Mild to moderate Alzheimer’s disease, diagnosed in 2014.
Albany, New York, USA.
Former housewife and shop assistant, now retired.
Two daughters, one son.