Image compliments of https://unsplash.com/photos/qkJmcJR-r5k?utm_source=unsplash&utm_medium=referral&utm_content=creditShareLink

The word sundown sounds serene, doesn’t it?  Sundown conjures up images of beautiful orange and red skies with the last bit of the sun going down the landscape.  If you live with someone with dementia, the word sundown, or sundowning conjures up a very different meaning.  People with Alzheimer’s or severe dementia have difficulty with their biorhythms and often get confused or frightened when the daylight starts to fade into night.

I am Deidre and I have experienced such episodes with my aunt Doreen.  I’ve spoken with others in group therapy sessions that have experienced many of the same terrifying scenes that I have gone through.  My friend, Jonathon, lives with his Mom who was diagnosed with Alzheimer’s over a year ago.  At first, she was forgetful of certain things such as turning off the water or leaving the burner on the stove.  Later, she began to forget names and how to dress herself properly.  It was at this later stage that she started to have sundowning episodes. She would start to act fidgety and pace when the sun started to set. Once it was dark, she would start to pick at her skin and cut her hands with her fingernails.  When it was time for bed, she would cry and ask to leave a light on.  It became so painful for Jonathan to watch that he asked her Doctor to give her nighttime medication to help her sleep.  The medicine helped, but she would still, occasionally, walk the halls at night and bump into objects. Jonathan would lose sleep out of fear that his mother would walk outside during her sleepless episodes. Eventually, he had to make the painful decision to put her into an Alzheimer’s home where she could have care 24 hours, and have skilled people help with her episodes.

My situation was similar, my aunt Doreen, began her sundowning episodes from something called hospital induced delirium. She had fallen and broken her hip, requiring surgery.  Once the surgery was complete, the hospital staff had to come in often to check on her vitals. This led to her having many sleepless nights.  Aunt Doreen was already into advanced dementia when she went into the hospital.  The combination of dementia and sleepless nights led to hallucinations.  She began to see marching bands in her room. She talked to people that weren’t there. This happened during the day and wasn’t harmful and sometime even amusing to be able to talk to her about what she thought she was seeing.  When I say amusing, I don’t mean I made fun of her, it’s just that she was so jovial and I thought her hallucinations wouldn’t last, so I listened to her grand stories. It began to get frightening when her hallucinations became very dark and disturbing once the sun would go down. She was absolutely terrified of the man hiding in her bathroom. She described a wicked man with ghastly features. She told me of the horrific things he had already done to other woman and children and now he was waiting for her.  I didn’t know my aunt Doreen could even conjure such horrific events in her mind.  She was convinced it was real and nothing would tell her differently.  She saw deadly scenes of house fires, burning people, airplane crashes, earthquakes, and numerous other nightmare invoking sights. It was all happening right there in her room.  I was terrified for her and didn’t want to leave her alone.  Her doctors assured me it would pass once she was home and on a regular sleeping routine.  I hoped so, because she had been living with me after her husband passed away. She and Uncle Dean never had children, and there was nobody else to care for her.  Since she was like a 2^nd mother to me, after my own mom passed away, I felt the need to take her in rather than let her go to a nursing home.

Two weeks later, Aunt Doreen and I were headed home. She was doing great; her sleeping habits were getting back to normal and she wasn’t having as many hallucinations.  After we got home, she stopped the hallucinations altogether.  I was so relieved to have my aunt back to her new normal. She was still forgetful and she started to forget directions I would give her. I noticed it more and more.  About 3 months after we returned from the hospital, the first hallucination occurred at night.  She screamed out about 3 in the morning.  I ran to her room to find the light on and her staring at the wall pointing. “That spider, Diedre, that spider. It’s so big, what will we do”?  I looked to the spot she was pointing, to see a nail head from a picture that had once hung there. I told her there was no spider there, I even went over to take the nail out of the wall while she screamed bloody murder that it was going to eat me. She was terrified. So much so, that she wet the bed.  I showed her the nail that I pulled out of the wall, assured her that there was no spider on the wall. When I finally convinced her to look at the wall. She smiled and looked at me. “You made it go away Diedre, thank you”.  I got her to the bathroom, cleaned her up, changed the sheets, got her to sleep with some valium that was sent home with her.  As I lay in bed that night, I pondered what might be the beginning of something much worse than a one night episode.

Aunt Doreen was fine for a few days and nights afterwards.  Fortunately, I worked from home and was able to keep an eye on her. When I needed to go out for more than an hour, I would have my neighbor come over to stay with her.  She was a retired nurse who didn’t have family in the area and was so happy to help me that she refused to let me pay her.  In fact, sometimes she would come over just to keep aunt Doreen company and try to engage her in puzzles or coloring books.

About 5 days after “the spider”, Aunt Doreen called me from my home office to come into the kitchen. She was getting a glass of water and the water was still running.  “Look at this Deidre, what are we going to do, we can’t drink that.”  I asked her what she meant as I turned off the water. “Stop, don’t turn it off, we’ll never get all the rust out of the water if you  turn it off.  That water is pure orange, you are going to need a plumber to come out right away.”  I was devastated, frightened, and frustrated at this damned dementia.  I tried to get her to see that the water was clean, I even drank it in front of her to which she laughed and said “I guess your blood won’t be iron deficient.”  Aunt Doreen always did have a good sense of humor.  I called my neighbor for advice and learned that I shouldn’t show concern or try to negate her fear. I should make an appointment with her Doctor to see if any of her medications could be causing the hallucinations or if there is anything she could take to help.  I made an appointment but they couldn’t get us in for two more weeks! That was frustrating because I wasn’t sure how I would hold up if these hallucinations got worse.

Two weeks passed, and we went through sleepless nights in which aunt Doreen thought robbers were in the house, the spiders came back, there were mice all over the floor, people hiding in her closet, water coming in through the walls and the ceiling, and a snake that was in her dresser. I was exhausted.  The Doctor ended up changing one of her medications and giving a new concoction of sleep aids. He gave us some advice on routines so that Aunt Doreen would have the same nighttime routine. I left with an exhausted, yet hopeful attitude.

Months went by with no episodes. We had a nightly routine where dinner was at 4:30, a chamomile tea at 6:00 pm, the nightly game show she couldn’t live without at 6:30, a word search game at 7, and bed at 8 pm with her sleep aids.  We were finally in a routine that worked, and she was well rested (as was I).  She passed away a year after the episodes, but she passed in her sleep, with no hallucinations.  I was sad to see her go, but happy that she had gone peacefully and on her own terms.  She is finally at peace, in heaven, with Uncle Dean.  I started a dementia group for caregivers that don’t understand the stages of Alzheimer’s, Dementia, or what Sundowning is. I’ve been running the group for 3 years now and am grateful for the hard time I went through, in order to help others.