People With Alzheimer's May Still Be 'There'

There was a lady with Alzheimer's I volunteered to visit weekly at a local memory care facility. I'm going to call her Carolyn. Before my first visit the administration told me she loved Elvis. So I bought an Elvis CD and took it, along with my portable CD player, to the visit.

After introducing myself I said, "I understand you love Elvis."

"Elvis?" she asked with disbelief. "Where'd they get that?"

"Well, what kind of music do you like?" I asked her.

She tried very hard to pronounce Tchaikovsky. She never did get it right but I understood what she meant.

So the next time I took Tchaikovsky's Nutcracker Suite and played several selections for her. She was ecstatic. She smiled and tapped out the rhythms on her lap using both hands. She clapped enthusiastically at the end of each piece. It was a true joy to see her so happy.

Then Carolyn declined significantly. She was receiving hospice care and was always in bed when I arrived. Her eyes were usually closed, even though she was often awake. I talked to her but she never said anything back.

Nonetheless I kept playing the Nutcracker Suite for her every time. She showed no reaction whatsoever. I was frustrated but kept it up anyway.

Then one day I asked, "Do you like it?"

Her response was shocking to say the least.

She immediately opened her eyes widely and said in a loud, clear voice, "Very much."

It was proof that she was still "there" -- still aware of her surroundings even though she rarely acknowledged it and even though she was literally on her death bed. She died a week later.

People with Alzheimer's -- especially those in the later stages of the disease -- may stop talking or making other clear attempts to communicate. Too often we assume they don't know what's going on around them. We think they don't understand what people are saying to them or about them. My experience with Carolyn shows that's not always the case.

I had two similar experiences with another woman I visited, too. We'll call her Sue. Sue was very frail -- physically and mentally. She, too, was receiving hospice care. About all I could do with her at my visits was hold her hand and talk to her softly. She never said anything to me.

I was surprised beyond belief one day when I told her that I knew her daughter and that she must be very proud of her. Suddenly Sue's face came to life. She pursed her lips and shook her head vigorously from side to side. It was perfectly clear that she was not proud of her daughter at all. And it was perfectly clear that she wanted me to know that.

But the most touching moment with Sue came a few weeks later. On my tenth visit I was holding her hand as usual. Then she slowly raised her other hand, put it on my arm and began to gently stroke my arm. If I had any doubts about her awareness of her surroundings, this action abolished them. Sue was, indeed, still "there," although she, too, was at the very latest stages of the illness and passed away three days later.

The lesson in these examples is that just because people with Alzheimer's don't talk doesn't mean they aren't perfectly aware of what's going on. As a result we should never talk about them as though they aren't present and we should never say anything to them (or to others in the room) that we wouldn't say to them if they were able to talk.

Another lesson is that we should keep visiting our loved ones with Alzheimer's and keep talking to them even if they don't recognize us and even if they don't say anything to us. They may be enjoying the visit immensely but just unable to tell us that.

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. In addition, her website, http://www.ComeBackEarlyToday.comComeBackEarlyToday, contains a wealth of information for Alzheimer's caregivers.