A Thousand Pieces

For no logical reason, I recently bought a thousand-piece puzzle. I’m not sure whether I was feeling optimistic, or if I was merely delusional.

I set up the card table in the sunroom with its good lighting and relaxing atmosphere. I dumped the puzzle and began to sort the edge pieces. That’s where I ran into my first obstacle. I couldn’t get the edge of the puzzle completed, and knew that if I couldn’t figure that out, I wouldn’t find the pieces to make the pretty Christmas picture.

After about a week of struggling with the “relaxing” project, I decided it needed a different surface. The card table was too soft and the pieces deceptively seemed to fit when they didn’t. As I tried to transfer the puzzle to the kitchen table, the sections that I had pieced together fell apart. Finally, I came to my senses and scooped the puzzle back into the box to give to my aunt. Although she has a knack for putting puzzles together, it seemed almost mean spirited of me.

Attempting that puzzle by myself after a twenty-five year hiatus made me think about the last thousand-piece puzzle I’d put together. Jim and I moved our drop-leaf table to the living room and dumped the puzzle onto it. I planned to work the puzzle with Jim. His dementia had gotten worse, and I thought the puzzle might help him focus.

Prior puzzles had been frustrating for me because Jim could fit pieces together with ease while I struggled. This time, we sat down to work on the puzzle, and Jim tried to force pieces together until frustrated, he stood up and wandered off.

I had forged on alone for several days when Jim walked by, picked up a puzzle piece, and walked off with it. By the time I had completed the puzzle, it was missing several pieces, evidence that Jim had picked up more than one piece.

When a person has dementia, their brain is much like a puzzle with an increasing number of missing pieces. To complete a puzzle, we have to connect all the pieces together. Our brain encodes all the pieces of information learned in our lifetime in 100 billion neurons that interconnect with (an estimated) 100 to 500 trillion synapses. In a healthy brain, these synapses communicate through a complicated process that releases neurotransmitters that allow the brain to function properly.

Alzheimer’s disease and other progressive types of dementia interrupt the synapses and result in neuron degeneration and brain cell death. The loss of neurons affects memory, learning, and reasoning. As the disease progresses, the damage spreads into other areas of the brain causing the brain to shrink.

We care partners have a difficult time accepting that we will become a bystander as our loved one progresses from memory glitches to the unlearning of dementia. As the greedy jaws of dementia swallow up pieces of memory and skills, we cling to the ones that remain. Without all the pieces, a beautiful picture and an amazing mind, fall apart in slow motion.

All I had to offer was love and the best care available. In Jim’s journey, the time came when I realized he needed more care than I could give him at home. When Jim went to live in his new home, our family never wavered in providing loving care for him.

 I may give up on a thousand-piece puzzle, but I have never given up on someone I love. Although the final picture didn’t turn out as I hoped or imagined that it would, I feel blessed to have known and loved a man named Jim.  

alz.org/sedaliawalk

Copyright ©August 2025 by L. S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Sundowning: Dusk to Dawn

 

When the sun goes down, one out of five persons with dementia will experience dramatic changes in behavior. Agitation increases, and they become irritable and anxious. This change can last for a short time or it may continue from dusk to dawn. As the caregiver’s energy wanes, the person with dementia has an energy surge that can last all night long.

I noticed a change in Jim’s nighttime behavior about four years into dementia. He had become restless and wandered during the day. We all became vigilant—even the neighbors—and worked toward keeping him safe.

If Jim wandered off when his mom was watching him, she would follow him with her car. For some reason, he would not get in the car with her, so she would call me on her car phone to tell me where he was walking. I’d leave work and pick him up. After he was safely at home, I would go back to work and hope that once was enough for that day.

It was also about that time that Jim began to roam at night. I would wake up and find him roaming around the house and cajole him into coming back to bed for a few more hours. Then, he would sleep during the day, and be wide awake when I wanted to go to bed.

Our family physician prescribed a sleep aid to help Jim rest more at night. After a short time, I realized he slept peacefully for four hours. Then, he was up and roaming. One night, I realized he wasn’t in the house so I jumped into my car and found him a few miles down the road. Jim was fully dressed, wearing sunglasses, and walking slowly with a cane.

I stopped the car and walked until I caught up with him. I latched onto the crook of his arm and  steered him to the car, turned around, and took him home. After that, I found an alarm for the door so that he couldn’t leave without me knowing.

Recently, I was reading an interesting article about the Hebrew Home of Riverdale, NY, that saw a need for night-care as well as daycare for persons with dementia. The official name of the  “Dusk to Dawn” program is ElderServe at Night.

The long-term care community provides transportation to and from the facility so that participants might channel their energy surge to a night of activities. The program caters to individual interests with everything from dancing to massage and relaxing music.

I had never heard of a nighttime program, but I finally found one facility locally that offered adult daycare. After about a week, Jim wandered away from the facility and they would not let him return. I can’t blame them for not wanting to be responsible for a man who headed out onto the highway carrying his guitar. At least, he was going in the direction of home.

Later when Jim went into long-term care, he wandered the halls at night with only fitful sleep. At first, he never slept in his bed but in the middle of the night, he would take short naps on the couch by the nurse’s station. Jim’s norm was to pace almost non-stop. He would take short breaks to eat, shower, and occasionally nap in his recliner during the day.

Later in the disease, Jim’s problems with balance caused him to fall often. With medication, he slept more at night and body alarms helped staff know when he was trying to get out of bed or out of his chair.

The one thing that bothered me most about the special care unit was how Jim lost his freedom. There’s a sense of injustice when someone who risked his life to defend his country’s freedom  lost his personal independence.

I often broke him out of the facility to take him on drives, walks in the park, and to drop by Dairy Queen for a milkshake. In the last months of his life, it became too difficult to load him in the van, so I brought him his favorite foods and wheeled him around the parking lot.

After Jim passed away, one evening I drove through Dairy Queen and ordered a milkshake. The kid at the window said, “Didn’t you used to bring your husband by for a milkshake?”

  “Yes, I did,” I said. I drove to the park, sat on a bench until dusk. My milkshake was long gone, along with the illusion that Jim was beside me. When I headed home, I knew dawn was a full night’s sleep away. The only thing to disturb my sleep would be broken dreams and sweet memories.

 

alz.org/sedaliawalk

Copyright © August 2025 by L. S. Fisher

http://earlyonset.blogspot.com

#ENDALZ