Denial May Deprive Alzheimer's Caregivers of Joy

Alexandru was a close relative of Ed - my beloved Romanian soulmate of 30 years. Alexandru was visiting Ed from out of town. One evening they had a long talk about a wide range of topics - most of which concerned Alexandru's professional issues. The next day Ed had no memory of the visit, let alone what they had discussed.

I had been telling Alexandru for months that Ed had Alzheimer's, but he never believed me. He thought Ed's memory problems were just due to normal aging. In short, he was in a state of deep denial. Alexandru simply couldn't believe that Ed didn't remember their time together the previous evening. He tried to jog Ed's memory but it didn't work. At all.

Alexandru was distressed. In fact he spent all the rest of his time with Ed trying to refresh Ed's memory of their talk. The next day he left for the airport to go home, feeling upset and distraught. Feeling like a failure. Feeling unloved.

What Alexandru didn't realize was that Ed would never remember that visit. It would have made more sense to spend their remaining time together discussing something else or interacting in some other way. They could have had a pleasant - maybe even joyous - visit.

For example, they could have spent the time playing with the little stuffed animals Ed loved so much. I made this suggestion to Alexandru and he dismissed it out of hand. He wasn't going to play with Ed and his stuffed animals. He felt it was beneath both his and Ed's dignity.

Unfortunately, Alexandru's refusal - or perhaps inability - to accept the fact that Ed's memory was badly impaired prevented them from moving on to something more pleasant. As long as Alexandru was in this state of denial he'd never know the joy I felt with Ed and the little ones. He'd never see Ed smile and hear him laugh as I so often did when we played with them. He'd never know how much fun it was. He'd never sit and giggle with Ed like a parent and small child playing together.

My friend, Sandy, experienced a similar situation. Her grandmother, Ethel, had dementia and Sandy's mother was in denial. She kept trying to make Ethel act 'normal.'

Ethel kept asking, "Where are the girls?" From her tone of voice it was obvious she was upset about not knowing where 'the girls' were. (Nobody quite knew what she meant by 'the girls.') Sandy's mother kept trying (in vain) to explain that there were no girls. When this explanation didn't stop the question about the girls, Sandy's mother became upset. She tried and tried and tried, but nothing ever worked.

When Sandy came to visit, her grandmother asked her the same question - "Where are the girls?" Sandy didn't know to what girls her grandmother was referring, but she simply said, "They're in school, grandma." And that was the end of it, at least for a time. Ethel stopped asking about the girls and the two of them went on to have an enjoyable visit.

Whenever the issue of the girls arose, Sandy tried to explain to her mother that she should tell Ethel a similar white lie and get on with the visit - a visit that could be a satisfying one for everyone involved. Unfortunately Sandy's mother, who was in deep denial, could never accept this advice and she subsequently became depressed. She didn't really enjoy any visits with Ethel.

All too often Alzheimer's caregivers are in denial. Hence they spend their time trying to get their loved ones to 'act normal.' Trying to get them to remember and do things they will never be able to remember or do. This only leads to anger and frustration for the visitor (and often for the person with Alzheimer's as well).

It would be so much better to look for ways to interact at the level of your loved one rather than try to drag that person into our world. Because the person can't function in our world. We can only reach and enjoy him in his world.

One problem is that people in denial rarely know they're in denial. They believe their loved ones can be normal and remember things if they just try enough to make their loved ones remember. Hence, it's difficult for them to change the way they approach spending time with them.

This is a serious problem, the solution to which is quite difficult. If you were interacting with a friend of yours who doesn't have Alzheimer's but who's forgotten something important the natural thing to do is to try to jog their memory. Chances are the person will remember. This is 'normal.'

But if you try the same thing with a person who has Alzheimer's you will inevitably be disappointed. Your efforts will fail. You will miss out on the joy you might have if you were able accept the memory loss and find some other way to connect. To connect on a level that could be wonderful for you both.

If you're an Alzheimer's caregiver and you feel that you're in denial, try interacting with your loved one in some way that focuses on the present moment rather than one that involves the person's memory. See how that works. You may be pleasantly surprised.

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer's caregivers.