Sundowners(8)

Kathibegood

I’m fairly new to this forum.  I have found comfort here knowing I’m not the only one experiencing complications and emotions  with this terrible/sad condition.  My husband and I were taking care of both my mom and dad since 2020.  Mom passed away in September.  They were married for 63 years. Now we have dad without his other half.   Dad is 84, and is late,middle -late stage  

Our most recent development is with sundowning. He recently has developed a terrible shiver/shaking/tremor along with some hallucinations.  Seems to start around dinner time.  Then when he starts asking where mom is, the shaking gets really bad, he can’t  even hold a cup of water, and can barely walk.  He also does not sleep for more than 3 hours at a time   He us up and down all day and night  

I’ve asked his Dr.  He said he hasn’t heard of the shivering as a symptom.   And wants to prescribe him mirtazapine for the lack of sleep. I am very apprehensive when it come to any antidepressants when it’s a normal  brain.  Even more so when the brain doesn’t function properly. 

Has anyone had experience with this shaking?  

BassetHoundAnn

Hi, Kathibegood, and welcome. I am so very sorry about the loss of your mom and now your dad's progressive illness. 

Shaking, hallucinations and serious sleep disorders are prominent symptoms of dementia with Lewy-bodies. Lewy-bodies dementia causes symptoms that are similar to Parkinson's. 

My mom suffers all those things when she's sundowning. I've always assumed she has Alzheimer's but she's never been officially diagnosed with ALZ. Shaking is a part of many forms of dementia as it occurs as motor control breaks down. 

It would be a good idea to take your dad to a neurologist who specializes in geriatric patients. A geriatric neurologist or psychiatrist would be better than a primary-care physician at prescribing appropriate medications especially since the PCP doesn't appear to have experience with trembling.

I'm sure others will chime in. You've come to a good place for help and advice. Welcome. 

harshedbuzz

KathieB-

Hello and welcome. I am sorry for your reason to be here, buy glad you posted.

I would reach out to a geriatric psychiatrist. Dad's geri-psych was the most important member of dad's team. The neurologists at the memory center did a thorough job of diagnosing his kinds of dementia and his PCP was terrific but they don't have the same level of expertise around psychoactive medications in the elderly with dementia.

I can appreciate a reluctance to medicate, but the feelings driving these behaviors are real for your dad and he no longer has the cognitive bandwidth to process them. Meds may be needed for his quality of life. My dad was given a low dose cocktail of 3 meds that calmed his agitation around delusions and hallucinations. He slept a bit better at night but wasn't at all sedated. His medication made it possible for him to respond to non-medication strategies like validation and redirection. 

How do you respond when dad asks after mom?

My dad had a bit of a tremor that was more pronounced with agitation. Could that be what you are seeing? Is it all the time/more pronounced when agitated? If he is seeing a neurologist, perhaps you could send them a video clip of dad when he is shivering/shaking. 

HB

Kathibegood

Thank you for responding. They have never really said which kind of dementia or Alzheimer’s he has.  Seems like the terms are thrown around interchangeably.  I think I will try to get him to geriatric neurologist.  Thanks again and Have a great day!

M1

Agree with HB that having him evaluated may help--but would emphasize that she suggested a psychiatrist, not a neurologist, and I tend to agree.  The combination of motor symptoms--the tremors--and hallucinations raises the question of Lewy Body dementia.  May matter in that with some of the dementia variants like Lewy Body and frontotemporal dementia, some medications may not work as well.  You do need someone pretty knowledgeable to sort this out, but a pscyhiatrist is going to likely be more helpful than a neurologist with managing the specific behaviors that are troublesome to him and the rest of the family.

bayviewgal

The first thing I thought was Parkinson's. My husband's sleep routine was him getting up every 3-4 hours to either go to the bathroom or just be awake and he would watch tv while I'm trying to sleep and i couldn't get back to sleep then i would toss and turn. My sleep routine got SO disrupted that I would get upset each time this would happen and I would have a hard time getting back to sleep, if i ever did. After talking to his neurologist, she suggested a small dose of Melatonin. Since we all have natural melatonin in our system, it seemed natural and the right thing for him to try. And it's worked.!!! He now sleeps all night with maybe only 1 trip to the bathroom and he's not so lethargic the next day from not enough sleep. So maybe you asking the dr. if melatonin would be better than an anti-depressant

harshedbuzz

bvg-

Are you using a standard OTC synthetic melatonin from the local drug store or a truly natural formulation? The latter are made with the pineal glands of slaughtered pigs and cattle which has been implicated in outbreaks of Mad Cow Disease. One of my husband's colleagues who lived in the UK died from this. It was never determined if he was infected with the prion disease through diet or the melatonin he took for jet lag.

HB

CatsWithHandsAreTrouble

I cannot speak for the shaking but both my mom (mid 70s) and my sister (early 30s) are on Mirtazapine. It has helped them eat better and it had helped my mom sleep better and is helping my sister get some sleep.

We first cut back mom's sertaline when we started the Mirtazapine per doctor's orders (I'm not sure which doctor it was, I think a geriatric pcp). That had negative side effect for mom's anxiety. Back at the beginning of this her neurologist suspected she had Alzheimer's. I looked up Mirtazapine online and saw a few studies that claim it has no affect for people with Alzheimer's as far as calming agitation. Our personal experiences back that up. She's currently having sleep disturbances that we're trying to figure out. Not sure if the Mirtazapine no longer works or if something else is contributing...

Antidepressants are good if you are given the right ones. There's nothing wrong getting extra support with medication; it's not a moral failing. Some people's brains just aren't wired typically to help combat depression so getting medication to help them is part of the supports they can have in addition to people who support them and environmental factors.

That said, there's lots of resources online you can search for that talks about non-medical ways to minimize and support someone sundowning. My particular favorite is keeping the areas bright in the evenings. Helps mom about 95% of the time.