sundown 2

We never had another evening quite as bad as the one described in PART I. The Sundowning continued despite adjustments to medications and the men in trench coats with guns arrived every evening around sundown until I made a decision without the doctors.

Sitting at the dining room table one day I told my husband we needed to talk. That we had something very important to discuss and he needed to listen to me carefully as I explained.  I told him how much I loved him and how I wanted more than anything for him to be healthy and without stress.  I asked him to confirm for me that he knew how much I loved him, which he did.  I told him that what I was about to say would be hard to deal with but was the absolute truth and he needed to believe me, he agreed to listen.  I explained that there was a movie made recently called A BEAUTIFUL MIND. It was a true story about a brilliant physicist who suffered from schizophrenia and would see men in trench coats with guns that no one else could see.  This man was so brilliant and had such a strong mind that he eventually overcame schizophrenia enough that when the images would appear he could tell them to get lost and to not bother him anymore.

I told my husband he had a beautiful mind.  That I was telling him this because I believed that he was just as strong and had as powerful a mind as the physicist. I asked him if he believed me, he said he did.  It was a solemn moment.  He accepted what I had told him.

I had previously arranged with my brother-in-law to be available by phone so my husband could talk to him about what I had just told him.  His brother had had similar experiences when on medication in the hospital after having surgery. He had thrown things at the nurses when he thought bad guys with guns were ambushing him on a street they were both familiar with in New York city.  This was very helpful.  His brother is one person my husband always said would never lie to him.

I had also arranged with a neighbor to talk to my husband about her experience with what medication can do to a person’s mind.  She is a retired surgical nurse who had suffered from extreme anxiety for years.  She was wonderful in her generosity to us.

From that day on the bad guys were not a problem.  We made an agreement that he would tell me if he saw something unusual, even a dog, so I could tell him if it was real.  For a short time, maybe a few weeks, I would occasionally see him turn his head slowly as I was wheeling him in his chair.  I would ask if he was seeing something.  He would say, “Yes, do you see it?” I would say, “No, it’s not there.  Just tell it to go away.”  He would accept that.  Soon they didn’t appear anymore.  It was like a miracle.  I was so proud of him and would remind him how brilliant he was.  It must have been so hard.



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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



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