Dementia: The Greatest Caregiving Challenge of All

A man in one of the Alzheimer’s caregiver support groups I lead wrote the following in a note to me:

“We caregivers come into this job ignorant and unprepared but we accept the load thrust upon us. There is no training course but we try to do our best. We read, we join support groups…. We make mistakes and we learn from them, but often it is too late. The mistake has been made, the disease has moved on and it’s too late to apply the learning. Instead we are presented with new problems and new opportunities to make even more mistakes.”

This man is one of the most devoted and successful caregivers I have known. He’s intelligent and has a lot of family support. He came as close as anyone could to getting everything right. Yet he is the first to admit he made lots of mistakes.

Being an Alzheimer’s care partner stands apart. Many regard it as the most challenging caregiving job of all—and simultaneously as the one we are least prepared to do.

We are all immersed in a culture that still, on the one hand, oversimplifies Alzheimer’s as memory loss and, on the other, strips its victims of human value when it depicts them as empty shells. That serves to frighten us but not to educate us about the experience of living with Alzheimer’s disease, or about what people with dementia need in order to live well and maintain their identity.

When my mother had Alzheimer’s, I set out to give her the best care I could—having no idea what she was up against, what she would need and how I should provide that.

I tried to help her stay as independent as possible. Yet I made many mistakes, expecting too much of her because I didn’t understand her limitations.

I bought her an automatic phone dialer so she could make calls on her own. All she had to do was lift the receiver and push one of the buttons labeled with the name of a friend or relative. But the two-step operation was too complex for her.

After that, I understood why she had huffed, “I will not put on that ugly thing!” when I suggested she wear her favorite sweater. Putting on a sweater has many steps—and is a visual-spatial puzzle as well. She couldn’t do it alone.

Alzheimer’s care often falls short because mistakes like mine are all too easy to make.

The most common mistake we caregivers make is thinking people with early or moderate dementia can control their behavior. It frequently appears to caregivers that their loved ones just aren’t trying hard enough—that they could remember something, or manage that simple task, if they wanted to. It’s hard to believe they can’t do what they’ve always been able to do before.

We also tend to expect too much of someone with Alzheimer’s because damage to the brain is hidden. People with the disease can look normal for a long time.

In my experience, that makes it seem even stranger when the person you care for does something peculiar. But you need to remember there’s a reason: there are changes in his brain.

Some people with dementia may hum compulsively. They do it as a way of soothing themselves. It doesn’t help to tell them to stop.

You may be almost driven crazy by the sound. Yet the outcome will be better for both of you if you can change the meaning of the behavior in your own mind from “This crazy thing he’s doing to annoy me” to “He’s doing it to soothe himself. Imagine how anxious he must be that he needs to soothe himself all day long.”

Distancing yourself from the effect on you helps you feel more empathy for him.

But novel challenges pop up almost daily. You are caught unawares over and over again in unusual situations no one trained you for and that require a response based not on facts but on the perceptions of the person with dementia.

For example, imagine spending an evening at home with your loved one who is in the moderate stage of Alzheimer’s disease. She suddenly says, “I want to go home.” The normal response would be, “You are home!”

But here “home” is more a feeling than a place. She may be longing for the sense of security she felt as a child at home, with her parents protecting her. Therefore, a helpful response addresses that. It might be something like, “I’m here. I’ll stay with you and keep you safe.”  

Some mistakes come from trying too hard. As a caregiver, you want so badly to be fair and explain to your loved one why he can’t drive anymore. You always have been open with each other, so you try to explain. But as you build your case, giving reasons, you see he’s getting more agitated. Suddenly, he’s screaming at you, and you’re in tears. You’ve never seen him like this. You’re horrified—in part at him and in part at yourself for having unleashed this in him.

It’s such an easy mistake to make. You did it out of respect. You didn’t want to take driving away from him. You wanted him to see the reasons it’s necessary and agree to stop. But he can no longer do that.

A more realistic view of what’s possible now requires the painful relinquishing of some ordinary expectations and starting from his point of view when you can. (Where the driving dilemma is concerned, I’ve written more about it here.)

As a caregiver, you are on a round-the-clock, mental and psychological slalom course, demanding agility of heart and mind.

And who is there to teach you to do this impossible feat?

There are books, if you can find any time to read. There are courses given by the Alzheimer’s Association, which lists them on its website. They can be very good, but they may be infrequent and only occasionally held in your area. You need help now.

Your best bet is a support group. The quality varies—especially the educational component—but many are excellent, and the companionship and support are irreplaceable.

And perhaps most important you’ll find that everyone else is also mistake prone on this journey full of pitfalls.

Caregivers, forgive yourself for being human. You are the least to blame for not getting it right all the time. The job is too big, the day is too long, and the grief and loss are too great.