Sundown Syndrome: No Rest for the Weary
Merriam-Webster defines sundown syndrome as "a state of increased agitation, confusion, disorientation, and anxiety that typically occurs in the late afternoon or evening in some individuals affected with dementia." I first heard mention of the term "sundown syndrome" when I was a kid visiting my grandmother.
I didn't think too deeply into it at the time. I just knew that Grandmommie had a harder time at night, but I was never there at night to see it first-hand.
Sundown syndrome and Alzheimer's disease
I didn't have real, first-hand dealings with sundown syndrome until I was helping care for my father. That's when I got a taste of what my mom and her siblings, grandfather, and my grandmother's other caregivers dealt with all those years before.
At a tumultuous time when insurance red tape painted us into a corner, we had to bring Daddy home and care for him for several days. He was between placements, and the next stop was a behavioral facility with the purpose of evening out his moods and adjusting his medications.
He was often difficult, agitated, and confused. He was many things at that time. Docile wasn't generally one of them. We had to take off work and watch him around the clock. Nights were especially bad. Daddy's confused mind grew more confused as the days darkened.
Dad's sundowning experience
Daddy wanted nothing more than to be home in his last and most difficult year. Sadly, he didn't recognize his own home when he was there, especially at night. He didn't recognize us either. He wanted to leave.
As we were sitting up with him late one night, he leaned over to my younger brother and asked if he would take him home. Later on, he told the same brother that a "fellow" was going to take him home in the morning. The whole conversation between them was heartbreaking.
Unable to settle
He wouldn't stay in bed. We couldn't get him to settle down and sleep for any extended amount of time.
I guess if I thought I was in a strange place with strangers I'd want to go home too. I doubt that I would just agree to go to bed and forget either. The prison that his mind became at times had to be agonizing.
My brothers and I couldn't get any rest either. We were immensely aware of where we were and what was happening, but worn ragged, and confused by how we got there in the first place.
Find your team
Sundowning in Alzheimer's is no joke. We eventually got Daddy more regulated, but there was no way that any of us could have handled him alone at night at that point. It was a team effort to keep him and ourselves safe.
If you are dealing with this while caring for a loved one, please employ others. Tag team shifts. Explore caregiving options. Talk to your doctors about possible treatments, therapies, or placements. Ask for help. Carve out rest and relaxation time for yourself. You'll need your strength.
Don't forget though, that the sun will come back out tomorrow. Hang in there. Want to hear more about sundown syndrome from the Alzheimer's disease community? Search our forums.
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