Wish You Were Here

Gwendolyn de Geest, RN, BSN, MA

Caregiver Focus: One wife shares coping strategies as she navigates early stage Alzheimer's disease with her husband

Peggy and Howard met nearly 45 years ago at a university dance. Peggy was studying Nursing, and Howard, Civil Engineering. Peggy said, "I knew I was going to marry that guy, when he offered to take me home from the dance, with a bus ticket he found on the dance floor." They married three years later; two children followed, a son and a daughter.

Howard is now in the early stage of Alzheimer's disease. From the moment of diagnosis, his wife, Peggy, family members and friends were thrown into a state of turmoil, attempting to understand and attach meaning to what is happening to this person, Howard, they once knew.

Peggy tells a story....

I am sitting in the restaurant having lunch with Howard. But Howard's not here. We ordered our lunch: minestrone soup (Howard's favorite), Caesar salad, a nice panini bread, and tea. Howard excused himself. "I have to go to the bathroom, dear."

"All right," I responded. The soup came; I didn't want to start without Howard, but I was hungry. I finished my soup. Still no sign of my husband. The salads arrived...still no Howard. The food items have taken on a secondary importance.

By now, I'm beginning to wonder. I asked our waiter, "Excuse me, would you please check on my husband?  He's been in the men's room for a very long time."

The young man complied, and reported back to me, "Your husband says to tell you that he has to wait for his friend. In fact, the two of them are engaged in conversation."

"I don't understand," I replied. "Howard went to the bathroom alone."

By now, the young man could see that I was becoming anxious. With a sigh, he said, "Okay, Madam, I'll check on him once again if you like."

And he did so. When he reported back to me, it was the most confusing and frightening message I have ever received.

"Your husband is talking to his friend in the mirror. He told me to tell you he can't join you for lunch until his friend is ready."

Family members and friends caring for a loved one with Alzheimer's disease often don't understand what is happening. Chaos and confusion set in as they attempt to deal with the activities of daily living and restore once again some form of normalcy to their lives. Peggy shared her thoughts and coping strategies in a recent interview:

Talk about how it was for you when Howard was diagnosed with Alzheimer's disease.

The first thought I had was fear, but then, as strange as this may sound, the diagnosis almost came as a relief. I now could understand what had been causing Howard's strange behavior, and could empathize with some of his fears.

Can you offer suggestions for other families who are passing through a similar journey?

The scary part of Alzheimer's disease is that I don't know from day to day how Howard is going to react to different things. He said to me one day, "Peg, I can't remember from one minute to the next what I've done and what I haven't done."

What has really been most helpful is to draw closer with family and friends. We always have been a close-knit family, and now I feel the children are even closer. I feel blessed to have them. The best thing for us has been to take one day at a time. Some days, Howard is really himself again, and this gives me hope.

Do you communicate with Howard differently since the diagnosis of Alzheimer's disease?

After 39 years of marriage, Howard and I are sensitive to one another's body language. I know when Howard is happy, sad, glad, mad. I don't talk to him any differently, but I find Howard now communicates with feelings, not words. This happened when we were in the restaurant that day. Howard seemed to be getting agitated as soon as we arrived and needed to excuse himself.

Are there times you have difficulty understanding what Howard is saying?

I find I must be real sensitive to his body language and anticipate his needs.  One day Howard wanted a glass of water and couldn't articulate the word "glass." This frustrated him a great deal. We played guessing games for a bit until I figured it out. Even that day in the restaurant, he was trying to tell me he didn't want to be there.

How do you make the transition from being the wife of Howard to being his caregiver?

It's difficult. This disease is not about me. I know that, and yet some days I feel, "Hey, my needs aren't being met." Howard and I have always been very close, and we still are. Alzheimer's has changed our lives, but Howard is still Howard and I love him, whatever my role is. I will always be here for him.

Do you find that social situations have become awkward?

Howard and I never have been social butterflies. We have a small circle of friends. However, I do find that we stay at home more now. That day in the restaurant was awkward; I guess because the "mirror dilemma" was so shocking for me. I had a difficult time encouraging Howard to get to the car afterwards. He didn't even eat his lunch.

How did you manage to get Howard to the car?

Good question. As hard as I try not to be embarrassed or humiliated by these public scenes, I am. I know that Howard doesn't function well with noise or outside distractions. I really should have been more sensitive to his body language at that moment. The waiter was terrific and so helpful in encouraging Howard to "excuse himself from his friend," and return to the table. On the car ride home, we found humor in the situation. I find that it works really well to change the subject.

What things in your home environment have changed?

Howard is down to basics. I have simplified the environment as much as possible. I find that this eliminates a lot of confusion for him. The fact that Howard was engaged in conversation with "a friend in the mirror" is an indicator that he no longer recognizes himself or others around him.

When do you pause in your busy day to take care of Peggy?

I only give Howard so much of my time. I take good care of me. I maintain a healthy diet for both of us and we take walks together.  I love that Howard still likes to hold hands when we are walking. Howard loves to garden; he finds great joy in pruning the shrubs. I join him outside and we both enjoy the fresh air and nature.

Talk about how Alzheimer disease has changed your family relationship and interactions with your children and grandchildren.

The children focus on Howard, their Dad and their Grandpa, and not the tragedy of Alzheimer's disease. Some days, Howard doesn't remember our children's names. This hurts.  Never mind; we keep our love strong and our family strong. I do try to keep family gatherings smaller now; Howard enjoys this much more.

What lessons have you learned from caring for your husband?

Alzheimer's disease has robbed Howard of our memories. However, one can still be someone without memories. We can still have a life without our memories. Howard gets upset with me when I try to do too much for him. So, I focus on what he still does really well. Howard makes a "dynamite pasta sauce," and when we work together in the kitchen, I make sure that I chop the veggies.

The other day, Howard had his best suit jacket on to go out and wash the car. I have resolved that if the behavior isn't hurting him or others, then I let it go. I find that Howard lives in the moment. I know that Howard "is still in there." And I know Howard is still a beautiful human being.

Gwendolyn DeGeest, RN, BSN, MA has been working in dementia care for over two decades and has witnessed the joys and sorrows of families struggling to maintain a quality of life for themselves and their loved ones. Her thesis, "The Relation Between the Perceived Role of Family and the Behavior of the Person with Dementia," is published in the American Journal of Alzheimer's Disease, May/June, 2003. This work was presented at The International Congress of Gerontology, Vancouver, British Columbia. DeGeest resides with her family in Vancouver, where she is a professor.