Living with Alzheimer’s – A Caregiver Remembers

What follows is some insight for those who have never been a primary caregiver.  It is kind of like “a day in the life” of someone living and caring for an Alzheimer’s patient.

Alzheimer’s patient caregivers are often a spouse or an adult son or daughter.  And mostly it is adult daughters who tend to be caregivers for a parent with Alzheimer’s.

Many folks have seen people with Alzheimer’s or have relatives or friends with the disease and think they “get it.”  Still, unless you live it as a caregiver, day after day after day, year after year, up until the end, you do not “get it.” You just can’t.

Simple memories

My thoughts and I were sitting together reflecting the other night, when they floated back to days long gone. The trigger for the thoughts was my wife, Marty, who passed away from cancer and Alzheimer’s Disease five years earlier, on March 27. My thoughts kept bouncing around and the “little things” that used to happen frequently began to dominate the memory flow.

So I would like to share some of those simple memories. This is from an evening I remember well. It was when I promised I would call her in sick for work.

Sundowning

After dinner that night (I had turned into a pretty good cook), Marty asked me, “What time is my show on?”

Reflexively I asked her, “Which one?” even though I knew she had no favorite show. I also knew she had stepped into what is known in Alzheimer’s disease as “sundowning,” what I called it ‘Uh-oh time’ because these were the moments when she would unexpectedly become frustrated and agitated.

I could see her tensing. Then she looked at me and, raising her voice a decibel or two, said, “You know what show. Just tell me what time it comes on.”

A guilt-free liar

As a Catholic who loves his faith, I do not lie. However, the fact was, in my caregiver world, I had become a guilt-free, therapeutic liar. It was about survival, mine and hers. My justification was that without me, she was alone, and she was no longer able to survive on her own.

“Sorry, sweetie, your show is not on tonight,” I answered.  “There is a special about sharks on, and sharks scare you, right?”

“You know I don’t like sharks. I am scared of sharks. But that’s okay. I can watch the news, right?’

“Absolutely.”

I had lied to my wife.  There wasn’t a show on about sharks.  I only said that to move her off the topic.  But I felt no guilt.  It was a necessary tool for me to use in my role as her caregiver.

She headed to the sofa, sat down, and picked up her puzzle book. She always was good at doing the anacrostics (I find them incredibly difficult). Still, she sat and looked at the page, holding the pencil on it, which never moved. Then she said, “Do I have to go to work tomorrow? I’m so tired. I really could use a day off.”

Liar’s Hat ‘On’

Two years earlier, I might have tried to explain that she did not have a job and had not worked in seven or eight years. She still may have understood, but those days were gone. So, with my “Liar’s Hat” still in place, I answered, “You’re right. You do look tired. I think you need a day off too. Don’t worry. I’ll call in for you and tell them you’re sick.”

“You would do that for me?

“Of course, I would do that for you.”

That’s’ so nice. I’m so glad I don’t have to get up and go in. Is today Sunday?”

Whew, a relief question. I could tell the truth. “No, it’s Wednesday.”

“Wednesday, are you sure?”

“Yes, it’s Wednesday.”

Things were quiet for a while, and it was about 9 p.m. when I got up to go to the bathroom. Suddenly I heard smashing and banging coming from the utility room off the kitchen. So I headed in to the utility room.

In matter of minutes, Marty had pulled out of the wall cabinet all of the plastic containers, glasses and cups, and other things inside the cabinet, and stacked them all on the washer and dryer below. “Hey hon, what are you doing?” I asked.

Junk

She looked at me, and I could tell she was agitated.

“We have all this junk,” she said.  “We have to get rid of it. Why do we have all this junk? We have to throw it out.”

Immediately, I put my ‘Liar’s Hat’ back on. “Okay, when should we throw it all out?”

“I don’t know, maybe right now?”

“Well, it is kind of late. Maybe we can do it in the morning.”

“I don’t feel like putting it all back tonight.”

“Don’t worry about it. I’ll do it.”

“Oh, thanks. I’m too tired

There was one final comment. She looked at me and asked, “We are married, right?”

“Yes Marty, we are married.” (That was not a lie either.)

She got into bed about 9:30 and was asleep in about two minutes. I was mentally worn out but I looked at her and realized that an innocence had come from an unknown place and embraced her. But I also knew that when she awoke in the morning, she would not remember anything of what had happened.

I was Blessed

Since I do not “punch a clock” I have the joy of being able to attend daily Mass at 8 a.m. Marty would wake up at about 7 a.m. and always ask me, “Are you going to church?”

I’d answer, “Yup.”

Then she would ask, “Will you take me with you?”

“Of course” I always responded.

Love is patient, love is kind. It is not jealous, [love] is not pompous, it is not inflated, it is not rude, it does not seek its own interests, it is not quick-tempered, it does not brood over injury [1 Corinthians 13:4-5].

As a caregiver to a child of God, I was blessed.