When Alzheimer’s Disease Takes Hold

What can a family do?

When Alzheimer’s disease slowly steals away a loved one, family members begin grieving while the loved one is still alive. It is heart-wrenching to watch helplessly as the disease takes hold. Though it is very hard, it is important to focus on what can be helpful during this very difficult time.

As my mom, my husband, and I cared for my father over the course of ten years, we learned a lot, much of it by trial and error. Some things became crystal clear.

Getting the best medical care is critical

Not all medical care is created equal. We were very fortunate to have the help of a geriatrician who was a good diagnostician, was cutting-edge with his understanding of pharmaceuticals, and was readily available by phone. He consistently demonstrated respect and caring, even when Dad wasn’t cognitively able to fully understand everything that was happening.

Each time Dad had an appointment, Dr. R addressed Dad first and talked to us second. If Dad was having delusions during an appointment, Dr. R sat and patiently listened to everything Dad said, whether or not it made sense.

Over time, he built trust with Dad. Sometimes Dad was clear and understood what was happening. During those doctor visits, Dr. R reassured us that he would do all he could for him. He kept that promise.

We learned to enter into Dad’s world

The ability to enter into Dad’s world helped him and helped us. Each of us needed to have a well-honed ability to play along with whatever delusion would arise. That ability to pretend along with a good sense of humor made navigating all the unexpected twists and turns of this disease possible.

Sometimes it was common to sit and have “normal” conversations with Dad; however, delusions would come suddenly. And when they did, there was no amount of logic that could dissuade Dad from believing what he was thinking, seeing, or hearing.

One such time involved Mom. Dad always called Mom “Marie” even though her name was Mary. Once, he turned to Mom and said, “Where’s Marie?” She reassured him and told her that she was Marie.

He responded, “No, you’re Mary. I want Marie now.”

She fruitlessly tried to convince him that she was his wife and sometimes he called her Mary, sometimes Marie. He became annoyed and agitated and explained to her that he knew he had two wives and he wanted to see Marie now. Mom shrugged her shoulders, realized there was no sense in pushing back, walked out of the room for a while, and then quietly walked back in.

He smiled and responded with, “Hey! Marie, what took you so long? I was looking for you.”

Dad was in and out of lucidity for indeterminate amounts of time. We could never predict when or if Dad would shift from one state to the other. The best course of action was to play along with the delusion unless it put him in an unsafe position.

Any change in routine could make matters worse

When Dad was 87 years old, he was hospitalized for several days. Any break in routine often threw him into a state of confusion so a hospital stay really confused him. I learned later that this is common for people dealing with Alzheimer’s disease.

Separated for two days and one night was too long to be away from his Marie. When he was released from the hospital, I drove him home and I could see his sense of excitement increase as we got closer and closer to the house.

We pulled into the driveway, I stopped the car, and he flung the door open. He wrestled with his legs trying to get them to work. He had more confidence than ability at this point and his foot somehow got stuck under the seat of the car.

Though he freed his foot, he stepped out of the car too quickly. I know that getting to Mom ASAP was his motivation.

“Wait, Dad, wait until I get the walker!”

I got the walker, and he reached forward to grab the handle of the walker. Before I could even finish my statement, he pulled the walker out of my hand and gave it a shove, so it rolled down the drive into the garage door. He tipped and tottered, walker-less, heading to the house.

I knew I needed to somehow get him to use the walker. I also recognized that he was too heavy for me to hold him back. I quickly grabbed the walker. “Dad, here. Mom needs this walker. Can you help me and get it to her to use?” And so, he did. Accident averted.

I wasn’t nearly as lucky several months later. Again, Dad was admitted to the hospital with severe respiratory issues. The day he was released, I drove him home and as soon as I parked the car, he jumped out of the car, only to tip over, and fall flat on his back.

It was a slow-motion fall much like the felling of a tree. I reached out and attempted to catch him as he was falling and all 250 pounds of him slipped right through my arms. This was a pivotal moment when I realized that I had to get more help and would never be able to handle something like this alone again.

I can still remember the awful sound as his head hit the blacktop. Blood was everywhere. I grabbed a cloth and put pressure on the wound to stop the bleeding. Mom came out of the house and saw him, awake but lying on the ground. She bent down to kiss him and stroke his head as I called 911. As she leaned down to kiss him, she lost her balance and fell on top of him. I knew it, I heard, “Marie, Marie! You’re killing me! Get off! I can’t breathe!”

She desperately tried to get up, but as she did so, she leaned on him and pressed her elbow into his chest. There I was, unable to lift either of them and sure that if I didn’t get her off of him, she would crush him.

Yes, I rolled her. This was a quintessential moment of dark humor. Up comes the ambulance, and I am rolling my mom off my dad as she protests, “No, don’t move me! I want to stay with him.”

Dad caught his breath, the EMTs attended to his head wound, and he was on his way back to the same hospital where he had just been released.

Sometimes you need to be a private detective

Not every “emergency” is quite so dangerous. An early morning panic happened often. There were always things missing.

“Michele, I can’t find my teeth. Where are they? Can you find them?”

Dad wore false teeth for many years and cleaned them fastidiously every morning. I heard the toilet flush. I thought surely that he flushed his set of dentures. I knew I wouldn’t get anywhere by asking him directly “Did you flush them down the toilet?” I had to find an indirect way of getting the facts. I retraced his steps. At this point, that was fairly easy to do.

I knew he liked to wrap items up and place them inside other items. Since he got up he walked from his bed to the bathroom. The teeth had to be somewhere in either room.

After much searching, I dumped out the hamper and found his teeth wrapped neatly inside his tee shirt. Success.

The predictability of a game was often soothing

It goes without saying that seeing a parent lose his faculties is heart-wrenching. Each time Dad lost lucidity, we wondered if he would come back. Would he still remember us by name? Would he know who he was? Something unusual, in Dad’s case, was that he never forgot who we were up until the day he died.

We could see he was visibly reassured when one of us was near him. He also was acutely aware that he was losing his faculties. That was very difficult for us and especially for him.

Mom tried everything she could think of to delay the progression of the illness: daily rounds of a card game called Hand and Foot and also a board game called Rummikub. She reviewed pictures with him and reminded him of the names of people he had trouble identifying. Settling into a game sometimes broke a delusion he was having.

She often reassured him and helped him take his “memory medicine” every single day without fail. This mountain of a man who was stronger than anyone I knew, and bigger than life itself, now never wanted to be alone.

Sometimes it is touch that cuts through the noise

What helped him most was when someone he loved was touching him.

Rubbing his feet, massaging his shoulders, or simply holding his hand calmed him down, most times. Catching him off guard with touch could have the opposite effect so any touch was preceded by permission. A simple “ Can I rub your shoulders, Dad?” was always followed by an enthusiastic “Yes.”

When I was a little girl, I had bad muscle spasms, especially in my legs, and my sleep was disturbed because of the pain I felt. I remember how Dad would sit at the bottom of my bed and massage my calves and my feet for hours until I fell asleep. I desperately wanted to give him that kind of comfort in return.

Music as medicine

Music can be a wonderful balm for us all, but it can be especially helpful when caring for a loved one with Alzheimer’s disease or dementia. Sundowning ( late afternoon ) was an especially difficult time. We learned to access music to settle Dad during this time.

Sometimes soft, beautiful ballads were especially calming. Other times, polkas engaged Dad so much that his agitation settled. Still other times, it was Christmas carols at any time during the year. My husband frequently sang to and with Dad as he played guitar. Dad loved it. Though he may have forgotten what day it was and where he was, he never forgot the words to Christmas carols.

No two people are the same

For the last ten years of Dad’s life, we faced daily challenges brought on by his Alzheimer’s disease. There was a lot of trial and error on our part. It’s important to remember that what may work for one person, may not work for another.

The most important point was to keep trying to find something that could make life easier. Now that some time has passed, it is easier to see what was actually helpful.

In some ways, we were fortunate. Dad was in and out of delusions until the very end. Even when he was not clear, we knew that he was still in there. Though he may or may not have had the ability to verbalize this, I believe he knew that we loved him and we were with him regardless of his state. With this devastating disease, that’s about as much as we can offer. We can only hope that it’s enough.