Aug 26, 2012

Answers to Questions On Being a Young Alzheimer's Caregiver

What concerns me the most is how my mother's progression with Alzheimer's disease will affect my daughter. May I ask you if you feel that in any way you were "scarred"?

By Max Wallack
Alzheimer's Reading Room

Answers to Questions On Being a Young Alzheimer's Caregiver
Max and his great grandmother Gertrude

From time to time, I receive emails asking me about how I feel I was affected by being an Alzheimer’s caregiver at a young age.

Recently, I received several such questions, of which the following is an excerpt:

What concerns me the most is how my mother's progression with Alzheimer's disease will affect my daughter. May I ask you if you feel that in any way you were "scarred"? I just get worried sometimes how I will be able to explain why grandma is not talking to her or seems emotionless, etc.

Today, Bob made me aware of a similar question being asked here, so I decided to share my responses with the Alzheimer's Reading Room community.

I have been thinking very hard, and I honestly can never remember being “told” about Great Grams. I was just never shielded from what was happening or from any discussions about what was going on. I think I learned from living it, and I think that’s how my parents and grandparents learned, also. I think, at any given point, I was probably as aware of Great Grams’ condition as the rest of the family.

I don’t think I was scarred in any way. On the contrary, I think I developed much more empathy and feelings for others as a result. That isn’t to say that I wasn’t resentful, at times.

When a 10 year old has really looked forward to a vacation and, then, has to spend time defending his family members to the Honolulu Police Department, it is not pleasant. While we took Great Grams everywhere with us socially, we tended to not take her to very many school type events, avoiding having to explain her sometimes strange actions to friends and teachers.

I was very protective of Great Grams, just as your daughter seems to be of her grandmother. I don’t think this is something that can be taught. I think it was the normal result of the blending of my personality and my Great Grandmother’s. The only time I can remember when I was really hurting was at a time when Great Grams’ behavior had been so negative and so intense that my Grandmother had not slept for days, and my Grandmother’s health was really suffering. On that occasion, I felt tremendous confusion and even some resentment toward Great Grams.

I also had another outlet that helped me. Bob has written about how I’m a Davidson Young Scholar. As part of that, I have had a “family counselor”, located in Reno NV, since I was four. I have spoken to my counselor and emailed back and forth, sometimes many times a week, even several times a day. This was someone I trusted. I can remember telling my counselor that she was very important to me because just by the process of putting my feelings in writing, I was able to understand things better. I had the same counselor up until Sept of 2010, when she resigned and accepted another position. My original counselor and I still correspond as friends.

Actually, one of the most important gatherings I attended was in St. Louis in 2009. It was the Build-A-Bear Huggable Heroes gathering. The kids I met there were amazing. For instance, I met a 6 year old boy with no legs who speaks to and inspires returning injured servicemen from Iraq. Meeting these kids was a very humbling experience.

[A response to explaining my grade acceleration] One day, when I was 3, I asked my parents, “What do you do if all your friends are dumb?” I didn’t mean that to be derogatory. I was simply confused by the fact that there was no intelligent conversation among my “friends”. As a result, I had turned to teachers and teachers aides for conversation.

After I turned 4 in preschool, one day I got in a lot of trouble (which is VERY unusual for me). The teacher was VERY angry, and she called my parents. What had I done? The teacher had left the students’ records on her desk, and I had read other students’ confidential material publicly to the class! I still think the whole thing was comical, but the teacher did not think so.

How could I possibly have understood that, at the age of 4, I was not supposed to read confidential folders? After that, my parents took me to an elementary school for “gifted and academically accelerated”. I joined their kindergarten class in May of the year, expecting to go to kindergarten the following year. However, in September, I was promoted to first grade. I stayed at that school through fourth grade.

I was thinking about what you could tell your daughter when her grandmother zones out. Maybe you could explain that Grandma’s brain needs to rest sometimes to help her remember better. Explain that when Grandma isn’t talking, it means her brain is resting. Then, your daughter won’t feel that her grandmother is displeased with her in any way, but rather just needs a little rest so they can spend more time together. I don’t think you need to explain a lot. You should not shield her from your discussions about your mother. She will absorb what she is developmentally (not chronologically) capable of absorbing.

Also, I’m sure there are some books written for young children about Alzheimer’s. Or, perhaps, just a book written for a young child about memory might be even more meaningful, and your daughter could form her own conclusions.

I do not believe that your daughter will ever be scarred by her relationship with your mom. Sometimes, she might feel pain, but overall she will remember it with a sense of accomplishment and pride.

Max Wallack
Max Wallack is a student at Boston University.  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. Max also works as a Research Intern in the Pharmacology and Experimental Therapeutics Laboratory at Boston University School of Medicine.

Original content Max Wallack, the Alzheimer's Reading Room