After my mother came to live with me, I gradually took on more and more of her care. By the end of the first year I was doing what any Alzheimer’s caregiver does. I bathed her, helped her dress, handled her finances, did her laundry, tried to be patient answering her repeated questions, gave her medications, coaxed her back to bed if she was wide awake in the middle of the night, prepared her meals, cleaned up when she had spells of incontinence, tried to find music or videos she might enjoy, took her on walks, helped her dial the phone and took her to 42 doctor’s appointments.
A caregiver is someone who takes responsibility for the well-being of another person.
That’s a definition I like for how broad it is. It can apply to a one-time act of kindness, like comforting a stranger in distress. Yet it just as accurately describes the long-term, all-encompassing responsibility of caring for someone living with Alzheimer’s disease.
Ahead of time, you can’t conceive of the weight and extent of that role. But neither can you imagine what you will gain from the experience.
Many chronic, serious illnesses make enormous demands on caregivers. If caring for someone with Alzheimer’s stands apart, it is because of the countless, and sometimes unique, challenges it presents, and the continuing losses caregivers suffer and bear witness to.
Alzheimer’s duration is uncertain. It can last anywhere from 10 to 20 years. Whether people decline slowly or more rapidly over those years, the caregiver’s load inevitably increases.
Within that decline is even more unpredictability. For days, people with dementia may have trouble dressing themselves or making a sandwich. Then suddenly the next day they can do it. Caregivers wrack their brains, trying to figure out what brought about the change and hoping against hope that it lasts.
Sometimes family members view this as proof that people with dementia could do these things if they wanted to or really tried. That’s not the case at all. The person has no control over it. Fluctuating abilities in someone with dementia can be compared to a flickering light bulb: they are a sign that these abilities are being lost.
It’s not only symptom variability that misleads caregivers. For a long time most people with Alzheimer’s don’t change in outward appearance. The disease is hidden inside their brains, and they look as they did before. We can easily slip into expecting them to be as they were before.
When people living with dementia confront a problem, they, of course, draw on their coping skills—the ones they know best, the coping skills they’ve used for a lifetime. Their declining abilities, however, make them feel threatened, so they employ their coping skills full force. This looks to caregivers as though they are “exactly like they always were, only more so.”
Family members need to accept that their loved ones have changed. That acceptance comes gradually as the realities of the disease become too obvious to deny.
It comes, most importantly, when caregivers acknowledge that the behaviors of the person with dementia are not intentional. Rather, they are manifestations of brain disease.
And acceptance comes more easily if caregivers reach out to learn all they can about the disease. They need to know what behaviors they may encounter, what they mean and how to respond to them.
For example, people with Alzheimer’s disease eventually develop apraxia, a motor disorder in which people can’t do some things we usually do automatically. They lose access to ingrained movement patterns that we no longer have to think about consciously. For instance, you get up from a chair so automatically that if someone asked you how you do it, you would have trouble saying. You’d need to think about it, while doing it, in order to be able to describe it. People with apraxia may stop in the middle of an action as if they can’t go on—which they can’t. It is a symptom that baffles most caregivers when they first encounter it.
Pat drove her husband, who had Alzheimer’s, to a park where for many years they had enjoyed walking together. After a leisurely stroll, they returned to the parking lot, but she was unable to get him back in the car. Although she didn’t know it, his brain couldn’t access the necessary automatic pattern to get in. After much unsuccessful pleading, she called a friend, who was a nurse, for help. The friend recognized apraxia at work and understood that Pat’s husband needed a different trigger to get him started. Because men are more used to sitting in the driver’s seat, their pattern is stronger for getting into the left side of the car. She told Pat to try seating him in the left rear seat. It worked.
Pat told me, “Now I see there’s a reason for these weird things that happen.” Making that connection helped her accept that her husband wasn’t just being stubborn and made her see more clearly that if she was better informed, that benefitted them both. When caregivers understand “why,” they feel less burdened.
Visual-spatial problems can present with the same symptom—people balking at entering a car. The car’s open doorway looks like a black hole, so affected people are afraid to enter. In this case, a bright red seat cushion can help them see what they are getting into.
The responsibility Alzheimer’s caregivers take on confronts them with dozens of unforeseen dilemmas like these. By handing them unaccustomed roles, it stretches them so that they grow. There are the household roles formerly performed by their spouse. Or personal-care roles as hard for a parent to accept from their adult child as they are uncomfortable for the child to carry out.
There is also the need to advocate for their loved one’s care with doctors, institutions and their staffs. Advocacy can be a difficult role for many people. It requires assertiveness as well as good judgment about which issues are important to pursue.
You need to be well informed and tactful to be effective and respected as a partner in your loved one’s care. Achieving this is not only a tremendous benefit to the one you care for, but you gain a sense of power, knowing you’re making a difference.
Taking care of someone with Alzheimer’s can feel overwhelming at times, but if, at the end, you know you have tried to make your loved one’s life the best it can be with dementia, it has great meaning.
In fact, I have seen it happen—in my own life and in the lives of other dementia caregivers—that the experience has given such a sense of purpose to our lives that, when it is over, we look for ways to continue to give.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
