Jul 31, 2011

Alzheimer's Dilemma I Don't Want My Grandchildren to See Me Like This

If an early stage Alzheimer’s patient states that s/he does not wish to have her grandchildren visit her, or see her when she no longer recognizes her loved one's -- should an Alzheimer's caregiver abide by these wishes?

What would the effect be on the grandchildren when they are not allowed to see their grandmother?

By Max Wallack
Alzheimer's Reading Room

As an editor for the Alzheimer’s Reading Room, I get some interesting questions, but none has been so difficult to answer as the question above.

This question has been on my mind for almost a week. I can imagine that this subject alone could be the focus of an entire course in medical ethics. Below are my thoughts. I am interested in learning what you think about this issue.

If an early stage Alzheimer’s patient, still capable of making rational decisions, said they did not want to see their grandchildren, for whatever reason, I would try to abide by that decision.

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I don’t think this would be good for the grandchildren. I would try to explain the decision to the children by saying the grandparents' brain is overwhelmed right now, and can’t bear to deal with any additional emotions -- even the love of the grandchild.

However, if an early stage Alzheimer’s patient, capable of making rational decisions, said they did not want to see their grandchild later, some time in the future, I would not react in the same way. I think each person should be allowed to change his/her mind.

What is good today, may not be what is best tomorrow, and this is especially true for Alzheimer’s patients.

My plan would be to ask the Alzheimer’s patient at the time when the visit would take place. If, at that time, the patient beamed at the idea of seeing the grandchildren (which, in my opinion, would be very likely), I would consider the patient to have made a different decision, under different circumstances.

Often Alzheimer’s patients who can no longer speak, light up when they see their loved ones. I remember how overjoyed great grams was when she saw me.

In Alzheimer’s World, we have learned that the truth is not always the best medicine. Not allowing the interaction between two people who need and love each other because of a desire to keep an old promise, just isn’t the way things work best in Alzheimer’s World.

In Alzheimer’s World, there is only today, and the today of both the grandparent and grandchild would be best served by allowing them to interact.

It could be harmful to the grandchild if they are not allowed to see the grandparent. I think it would be very frightening to a child to think that the grandparent was so bad off that it would be too horrible to see them.

The imagination can be even more frightening than the reality, even in this horrific disease. Perhaps even more devastating would be thinking that the grandparent didn’t want to see them. I think it would be easier to accept that someone can’t know me because they are very ill; than to accept that someone who loved me, no longer wants any involvement with me.

There is no question that this is a very difficult moral dilemma.

I am interested to see how others feel about this subject.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.
Alzheimer's Disease -- Advice and Insight

Original content Max Wallack, the Alzheimer's Reading Room