Aug 26, 2012

What is it like for a child to be an Alzheimer's caregiver?

I am committed to spending my life helping care for Alzheimer’s patients and their caregivers.

By Max Wallack
Alzheimer's Reading Room

What is it like for a child to be an Alzheimer’s caregiverI consider myself to be a responsible person. I credit my caregiving of my great grandmother for my sense of responsibility.

The earliest I can remember definitely feeling responsible for Great Grams was when I was 6 or 7.

Great Grams lived with us, and I felt great love for her. We were friends. Having no brothers or sisters, she was almost a sibling in her relationship with me. As I saw her begin to fail, I spent long hours trying to explain things to her. I think she was less threatened by receiving help from me than from an adult. We were friends.

On the other hand, many things we did were limited by Great Gram’s inclusion. Often, it was not so much that we didn’t want to include her, as that she herself was fearful of many people and events and didn’t want to participate. Unfortunately, we couldn’t leave her alone, which often meant foregoing events.

When I was 7 or 8, I was constantly aware of her inability to do the kinds of things that many of us take for granted. Whenever we went anywhere, I stayed with Great Grams. If that wasn’t possible, I often insisted that some other family member stay right with her. Clearly, I assumed a caregiver role. It was never assigned to me by my family. I just did what was needed and necessary.

I thought things were difficult in that early stage, but I had no idea what the future would bring. One of the most difficult things for me was witnessing the horrible burden all of this was placing on my grandmother. More and more, the whole family stayed all together in order to support each other.

I spent many nights sleeping on the floor, even though my home and room were just around the corner.

This became very difficult when Great Grams ceased to sleep at night. The problem was clear, but the solution was elusive. Everyone was tired. Great Grams would fall asleep many times during the day. We knew we should try to keep her awake during the day, but everyone was SO tired that it was a relief when she fell asleep, so we would use the time to do other things we needed to do. Then, of course, night came and it was time to pay the price.

Great Grams would often try to escape at night. She would even put her nightgown over her underclothes and slip, so she would be “ready” for her flight. Great Grams didn’t wander. She wasn’t looking for something. She was trying to escape. Perhaps, she was trying to escape her own terrible mental situation.

Great Grams would often call the police, or run to security officers, and tell them that we were trying to kill her. I have often wondered if other Alzheimer’s caregivers have encountered this. I know many Alzheimer’s patients can act mean to their caregivers, but I have never heard of any other patient who constantly felt the caregivers were trying to kill her.

Physically, Great Grams was a small, but strong person. She still had the ability, 6 months before her death, to run down a hill to a main street, flag down a truck, and get the truck driver to take her to the police station. However, her physical abilities began to fluctuate, just as her mental abilities fluctuated.

Finally, she began to fall when she got up a night. By the time I was ten, I was helping pick her up from the floor at night. She would even climb out of a hospital bed with sides. That was my life, at that point – a ten year old boy helping pick up from the floor a half clothed 95 year old woman, on a regular basis.

In Great Grams’ more lucid moments, I was her greatest source of joy. In her more lucid moments, she was concerned about my well-being. In her confused moments, she was my sibling rival, competing for attention and jealous of any attention that I received.

I spent many years trying to help Great Grams. I spent many years reading about and researching her condition. I wanted to understand more. The more I understood, the more I could overlook her difficult moments, appreciate the moments when she was “more there”, look beyond the disease, and recognize the great grandmother who no doubt had great love for me.

My emotions during those years were clearly conflicted. Someone whom I loved was making my life very difficult. Someone I loved, clearly needed my help, but didn’t always appreciate it.

People on the Alzheimer’s Reading Room have sometimes addressed the question as to whether sometimes they wish it were “all over”. I can only remember thinking that one time. That was a time when my grandmother was so worn down and ill that I wished she would be freed of the care of Great Grams. I didn’t want to lose Great Grams, but, at that moment, I would have chosen to relieve my grandmother.

There is no question -- this is a very difficult disease. It brings with it many responsibilities and ethical dilemmas. I don’t think anyone can go through being a caregiver to an Alzheimer’s patient and not come out a stronger and more responsible person. I didn’t realize it then, but my personality and sense of commitment were being formed during those difficult years.

Now I am committed to spending my life helping care for Alzheimer’s patients and their caregivers. I will be the kind of geriatric psychiatrist that takes into account the entire family, because I know that the entire family is affected. Most of all, I will really care because I have been there.

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.

More About the Alzheimer's Reading Room

Original content Max Wallack, the Alzheimer's Reading Room