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
August 2025 by L. S.
Fisher
http://earlyonset.blogspot.com
#ENDALZ