Our post last week on "sundowning" — a syndrome in which seniors' behavior changes dramatically after dark — generated an outpouring of stories from patients, caregivers and people working in hospitals, in hundreds of comments on Facebook.
Many brought up the fact that delirium and sundowning are related. While sundowning is thought to happen in elderly patients with advanced dementia, many people described seeing sundowning in others -- like a relative after surgery. While experts aren’t sure how much sundown syndrome and delirium overlap, they agree that not everyone who gets confused at night is sundowning.
Delirium is very common and also gets worse at night. So the first time someone experiences delirium they should be checked for underlying and reversible causes like infections or mind-altering medications.
People also pointed out that sundowning can happen at home as well as in the hospital. For people with severe dementia like Alzheimer’s, this is especially true.
Some commenters referenced "The Visit," a recently released horror movie where two children are visiting their elderly grandparents who exhibit erratic and violent behavior each night. I haven’t seen it myself, but it seems to be taking the concept to the extreme in the most frightening way possible.
Many of the stories on Facebook were particularly moving. We thought we’d share a few:
The nurses told me this might happen and requested someone stay all night with her, which I did. She was seeing red roses everywhere and wanted to get out of bed and pick them! Her hands were moving just as if she had scissors and a basket to hold them. Another time she saw waterfalls. At least she saw something beautiful.
I watched my mom suffer through this. She would sleep all day unless the staff of the nursing facility kept her engaged in activities but she became increasingly agitated as evening fell. She actually got out one evening and a staff nurse who happened to be driving to work found her driving her wheelchair down the street at 2 a.m. "Going home" is what she told the nurse.
The article suggests keeping hearing aids within easy reach. My late father had dementia and had a habit of flushing inappropriate things down the toilet. His hearing aids disappeared while he was in a rehab hospital following hip surgery. We believed he may have flushed them down the toilet.
There also were a number of heartwarming stories of family and caregivers dealing with this condition in creative and heroic ways:
My grandmother had senile dementia and lived in her own apartment in our home. As her confusion increased, I began sleeping on the floor in her room because she was up all night and endangering herself. One night she screamed that she had to push the baby out. Not knowing what else to do, I said OK PUSH! And she did and I said Here's the Baby! She calmed down and went back to sleep. The next morning she asked me where the baby was. Luckily my uncle (who had schizophrenia and lived her her apartment but with us also) was sitting across from her. I said, here's your baby right here. Since it was true, she believed me and let it go...
We deal with this every night. We have kept my husband's 91 year old grandmother in her own home with her husband through a lot of effort and determination but when that sun sets, it's easy to consider putting her in a facility because she completely loses it and starts looking for kids and dogs that aren't there, talking to herself, and being obsessed with electronics having lights.... if they have lights, she HAS to turn them off somehow and she will not go to bed until they turn off.... Sometimes she says the most bizarre things... It's sad to watch, but we continue to work hard to keep her and her 99 year old husband in their home, and not in a facility.
Some years ago (I've been a nurse just over 20 years), I had a patient offer me a small stack of tri-fold paper towels, saying "These are all my war bonds. Can you help me escape?" It took an army itself to hold back my tears...this man trusted ME.... I said to him... I have have a safe place for you to sleep; I will watch over you while you rest.... I lead him back to his bed whilst he laid his head down, unable to take his "money" as he may need it for later. I think to myself... This man fought for ME; I will not let him down. We all have our inner fight... What are you struggling for??
While a few people lamented that some hospitals were clueless about sundowning and delirium, others talked about hospitals that were success stories:
The hospital I currently work in has an strong non-pharma approach to sundowning including "a sense of security," "knowing baselines" (when possible), "providing hobbies" or simple activities," and often we provide a "sitter" (someone who has received a brief training on how to interact w/ confused patients by implementing the previously listed interventions). As an RN, I would often direct support staff to initiate activity (walking when possible), but the fact that these patients are confused, usually a bit anxious or downright afraid, and the fact that we have other patients trying to sleep at night often made walking the halls prohibitive. These "sundowning" patients often have a goal of getting off the floor and out of the hospital, and walking by doors and elevators can often escalate their focus on wanting to "escape." The interventions listed in this story are a jumping off point, but, in my experience (18 years as an RN and 2 years as a CNA), these interventions are ineffective. We need more research to help keep our sundowning patients safe.
And many people were thankful for the compassionate individuals who work in hospitals who went the extra mile to provide care for a loved one who may have been sundowning.
I will never forget one particular nurse who decided it was perfectly alright to let my mom sit in her wheelchair at the nurses station and answer a phone that they disconnected from the switchboard. It gave my mom a feeling of purpose in an otherwise scary and overwhelming time. I received one or those middle of the night "we can't get her to calm down or cooperate" phone calls but by the time I got there the head nurse had decided to approach the situation differently than medicating and sending her back to her room. My mom was sleeping peacefully in a wheelchair at the nurses station having answered so many pretend calls.
Thank you so much for your compassion. When my grandpa had cancer, he had to be admitted to hospital for tests we already knew it was the worst. Sundowning was the hardest to see. The RNs and the CNAs were so amazing. The first couple of weeks we would rotate staying over night at the hospital. So we saw the Sundowners first hand, one night the RN pull us aside and said, "Go home and get some rest. I will personally see that he's okay."
David Scales, M.D., Ph.D. is a third year resident in internal medicine at Cambridge Health Alliance.