Joan Cahill, on living with Alzheimer's

By Rebecca Ray
November 7, 2003

How did you know or begin to suspect that you had Alzheimer's? What was it like?

My answer usually is, "I don't remember." At this point, I don't recall a lot of the initial situations that I found myself in. I've never been good at directions, but I became really bad at directions. One time, I got lost en route to my sister-in-law's house-a route I had taken many times.

Another time, I found myself in a store that I had shopped at fairly frequently and they had redone their displays, so things were not in the order I remembered them. That episode was very frightening.

At first, we thought it related to some depression. I had a sister who died after a long illness, and then I had surgery. Not long after that, my brother died in a fire in his home. In the middle of all this, I had a stroke, but I made a good recovery. There was also some anxiety around paperwork, bills and scheduling. This all happened within a fairly short period of time, so surely that figured in.

My family also was beginning to notice I was repeating myself and having trouble finding the right words. I always have loved words, but was having a difficult time expressing myself.

How has your life changed since you discovered you had Alzheimer's disease?

The biggest thing is that I am no longer able to drive. I hate being dependent on others for rides. It generally takes me much longer to do things than in the past. Once able to read a few books a month, it now takes me forever to read just one. Multitasking is exhausting.

I still live by myself and manage to keep up my house with help from my family. Now I am being encouraged to consider an assisted-living facility.

What do health care professionals need to know to be able to meet the needs of people who have Alzheimer's and their families?

A lot of patience and understanding and a little bit of knowledge. There have been times when I have gone to the doctor's office and been ignored. The doctors sometimes have to be reminded to talk with me, not just my family.

How has having Alzheimer's affected the way you deal with patients, particularly people with Alzheimer's disease?

I am trying to be more patient with people in general and more accepting of who they are.

Did you ever expect you would develop the disease? Has anyone in your family had it?

Not only did I not expect it, I had never really heard of it. Nobody in my family lived to old age except a couple of aunts. One of them must have had Alzheimer's, but that term was never used to describe what she had. She would repeat herself, put on layers of clothes and that type of thing. She ended up in a nursing home. Everyone thought it was due to old age. Nobody talked about it.

I cannot recall having any experience working with Alzheimer's patients. We may have called it something else, like dementia or senility, but even then, I related it to old age, nothing more.

The only people I know with Alzheimer's are in my weekly support group. I really had not met and talked with anyone with Alzheimer's disease before the group.

How did you become a nurse?

I knew from an early age that I wanted to be a nurse. It started when I had an appendectomy when I was in the seventh grade. I was fascinated by the nurses and began reading about the profession after that time.

What did you like best about being a nurse?

[When I worked in community health education,] I taught programs on weight reduction, stress management and how to stop smoking. I just liked helping people do something that they wanted to do-to stop smoking, lose weight or recover from an illness. That always gave me a great deal of satisfaction.

Have there been any blessings that have come out of living with Alzheimer's?

I'm grateful to all my children-they are a big part of why I keep moving.