Have you heard of SUNDOWNING?  Most sources describe it as “a state of confusion and restlessness experienced by people with dementia.”  “Not a disease, but a symptom.”

In the spring of 2008, when my husband and I were experiencing some of the worst times of his illness I was desperate for help.  He wasn’t able to sleep therefore… I didn’t sleep.  He had lost a lot of weight and was probably down to 110 pounds.  His stress level was “to the moon!”, as he would say. Though I didn’t recognize it in the beginning, he was in the throws of “Sundowner Syndrome.”  It’s a condition commonly known to caregivers in nursing homes. As the sun begins to set, the agitation of the patient begins to surge and confusion sets in.  My husband’s case was severe.  He would hallucinate.

Not all cases go to this level.  The doctors had him on medications that addressed heart issues and fluid levels, even a low dose of an anti-depressant. He was also taking a prescription to relax him.  He was a stressful man before he got sick.  Our lives were now a nightmare.  I had never heard of Sundowner Syndrome.  Like everything else, I was learning by-the-seat-of-my-pants.

It started mildly, with him saying, “Oh, there’s a cute little black dog.  He jumped into my lap.”  That seemed harmless enough, just sad.  It was another sign of his aging and a little dementia.  He was 85 now.  A little dog was no problem and it seemed to give him pleasure.  I didn’t contradict him.  But my heart ached a little.  My husband was totally blind, how could he see a dog?

Within a day or two, with me sitting next to him, facing the windows in our living room he said, “Be still.  There are three men in trench coats with guns pointing at us.” Calmly, I said something like, “Ok, honey, I don’t know what you’re seeing, but I don’t see anything.”  He insisted I call the police.  Obviously, I couldn’t do that. I tried to reason with him.  We agreed I would call our neighbor across the street who is a retired nurse.  I told her why I was calling and she understood.  Our closest neighbors knew that I kind of had my hands full and they were wonderful.  She came right over.

My husband gave me instructions to stand next to him and hold his hand while she was to look in every room, including the closets, and report back to him with anything that was out of the ordinary.  I told her in front of him what he was seeing and that I couldn’t see anything.  She was amazing and cool.  As a nurse she had seen a lot.  She took her time, did everything he asked and told him she saw nothing unusual.  We thanked her and she left.  He wasn’t relieved, just knew he was losing the argument and didn’t have control.  By now he didn’t trust me.  I learned later that he figured I was in cahoots with the bad guys. Otherwise, why would I deny their existence?

Somehow we got through that night and a few others with me doing my best to deal with this situation, trying to convince him that there was no one there.  I couldn’t insult him by saying he was seeing things.  I tried explaining that there was this condition that some people experience when the sun goes down.  It was like shadows, I said.  Meanwhile I was talking to his doctors about medication adjustment or anything that might help.  They told me to humor him.

On the worst night of all, we had come home from an early dinner out.  It was dusk.  Just as I thought I was getting him settled in his chair he said, “We have to get out of here, they’re back!  Let’s go for a drive and see if they go away.” I thought, OK, we’ll go for a drive till dark, what can it hurt?

As I put him into the front passenger seat he said, “call the neighbors, they’re still here” (in the garage now).  I told him “It’s OK, there’s no one here.”  This was useless as I was the enemy now.  I used my cell phone to call our next door neighbor.  He came right over and assured my husband everything was OK. “There’s no one in the garage.”  It appeared to be working.  We thanked him and in his oh-so-kind way he left us, feeling helpless I’m sure.

We were only about a block from our house, driving very slowly, when he started searching for the door handle and opened the door.  My blind husband wanted to jump out of the car!  Thank goodness he had a seat belt on and no strength.  I was horrified and hollered for him to stop. Our street is private and short so there were no cars coming.  What I didn’t know at the time was that he was seeing the men in trench coats, with guns, in the back seat.  Poor guy was terrified for our safety and couldn’t trust me because I wouldn’t admit that they were there.

In the end, he decided that things would be OK for him if we went to a particular friend’s house, so that’s what we did. They took us in without hesitation.  My husband’s friend distracted him, gave him a martini and comforted him with conversation and laughter for about an hour.

The sun was down now.  We could make it through another night.

In my upcoming book, “Caregiving, A Love Story” I tell about our marvelous friends who took us in that night. We should all have friends (and be friends) like all of these I’ve mentioned.

This story continues in my next post titled “SUNDOWNING” Part II

P.S. You may think that you’ve read this post before and that’s because it’s one of the first to appear on my blog. Over the next few weeks, as we move through the autumn months, I will be revisiting other posts that I hope will bring you comfort and insight during this time.

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