81: Holding On to Dad Through Alzheimer’s

81: Holding On to Dad Through Alzheimer’s

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Holding On to Dad Through Alzheimer’s

The value of identity of course is that so often with it comes purpose.

~Richard Grant

Alzheimer’s wasn’t an unknown disease in our family. My grandmother was the first person I knew who had Alzheimer’s; she passed away when I was nine. After Grandma it was Uncle John, followed by Aunt Shirley, and then Uncle Har, who is still living with the disease.

When my dad was diagnosed I thought the family was as prepared as we could be. I also believed my dad was prepared and accepted the diagnosis well. It wasn’t until the second doctor’s appointment that I realized he didn’t take the news well at all. Mom, Dad, and I sat in the doctor’s office as the doctor told us what to expect and discussed possible medications for managing symptoms.

We walked out of the office and Dad stopped in the hallway and stood for a moment. I asked if he was all right. Dad said, “I guess I didn’t really believe the first doctor, but now two doctors agree. I guess I really have this disease.”

The man who I always looked to when I needed support broke into tears and went limp in my arms. I just hugged him and supported him as much as I could.

I knew this disease and I knew it was a race against time, as his memories would slip away with every tick of the clock. Dad had a very aggressive form and seemed to go through the stages within weeks when other relatives had taken years. I spent most nights in tears but also reading, not about potential cures, but how I could help Dad with basic day-to-day activities.

One night I read something that changed my life. It was a comment on a blog suggesting that someone with Alzheimer’s might not remember family members but might recognize simple relationships such as the nurse who brings them their favorite pudding. That night I started thinking about something I could do with Dad, like a hobby, which would differ from our father-daughter relationship. Dad was in great physical health and he had been a member of our local gym. I decided we would go to the gym together every Monday, Wednesday, and Friday. This fit with other articles that I read, which suggested that physical activity might help people with Alzheimer’s disease.

We started going to the gym. In the beginning he remembered me, but as the months passed he would start to forget me on and off. I tried not to push him, and usually just answered his questions until he figured out who I was or what our relationship was. One beautiful warm day we decided to skip the gym and take a walk around his neighborhood. As we walked he told me about the people who lived in each house and which houses had dogs.

“Do you live around here?” Dad asked me.

“No, I live about five miles north. But I grew up in this neighborhood.”

“Oh, do you know my son, Ken?”

“Yes, we played together a lot when we were young.”

“Oh my gosh, you’re my daughter, aren’t you?” Dad asked with a huge smile on his face as if he had just found an old friend.

“Yes, I am,” I said, turning my face away trying to hide my tears.

My idea worked. As Dad remembered our relationship less and less he still recognized me as a friend. Our relationship took a few unexpected turns during our days together but they were always positive. What I became in his mind was a taxi driver, friend, and fitness instructor.

I realized I was a taxi driver on our way to the gym once when Dad asked about my fees.

“How do you know how many miles you’re driving me? You don’t have a meter or anything. Shouldn’t you have a meter so you know how much to charge people?”

“I drive to the gym all the time so I know how far it is; it doesn’t change.” I answered his questions as I always did, without pushing him to remember me.

“How many people do you drive like me?”

“Just you,” I said as we pulled onto the highway.

“Well, you can’t make much money doing that. I don’t go out much.”

“It’s okay; I have other sources of income. Don’t worry about me.” This sounded like the dad I knew, always worried about having an income and health insurance.

“Well, who pays you to drive me around?”

“Nobody. I don’t get paid.” Sometimes my mom gave me gas money, but I didn’t want to explain that so I stuck with the simple answer.

“Why do you do this, I mean drive me around?” Dad asked, still trying to figure out who I was and why I would spend time with him.

“Because I love you,” I said, still looking straight ahead.

“Oh, isn’t that nice.” And that seemed to satisfy his curiosity for the day.

On another occasion Dad almost fired me. We took our regular walk around the track at the gym. As we walked Dad began to ask questions about my training and certification to work as a fitness instructor.

“How did you learn to do this?” Dad asked.

“What do you mean?”

“Well, help me and these other people with our fitness programs. Did you go to school for fitness?”

“No, I’m not a trainer, I just come here and walk with you,” I said as we continued to walk.

“You mean you’re not certified to help me? How do you know I’m doing the right program?”

“I don’t. We’re just walking and stuff,” I said, not knowing how to respond without scaring him.

Dad was silent for a few minutes and that’s when I figured he was thinking about firing me. How would that look on a résumé?

“So, do you have any education or certification for anything?” Dad finally said.

“I have a master’s degree in Business Administration, an MBA,” I said.

“Oh, well, I guess with that you can probably do just about any job you want,” Dad said with a little chuckle.

Getting my degree was an important moment in my life. It meant a lot to me to know that even though Dad didn’t remember me, he was still impressed by my accomplishment.

A few weeks before we lost Dad, he told me that he didn’t always remember me as his daughter but he always knew he could trust me and that he was safe with me.

Help them feel safe. That’s the best advice I can give to a care-giver of someone with Alzheimer’s disease. It worked for me, and it gave me a continuing relationship with my father right till the end.

~Julie Staffen

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