82 yr old making hand gestures while sleeping. Rapid Decline.

[Anonymous]

I've been on DCUM for 11 years, and have never posted on this particular forum. Am now at a point in my life - my father's life - where things are starting to happen with his health, and frankly it's scaring me.

My dad is 82, and was in excellent health till about 3 years ago when he developed AFIB. Since then, his life has spiraled in a downward direction,never really stabilizing long enough for him/us to take a breather. He has since then also been diagnosed with amyloidosis, Myelodysplastic syndromes (MDS). So he has a lot on his plate, as does my mom.

The last few weeks have been particularly difficult with my dad falling a total of 4 times in the last two weeks. He is unable to really walk anymore due to lack of energy. He has pretty much stopped eating, and drinking. Says he feels full all the time. He was rushed to the ER today, and the doctors are suspecting renal failure. My mom mentioned to me today that my dad is also starting to make hand gestures while he's sleeping - for example, he was making gestures like he was shaving and getting dressed - all while in bed, asleep.

Of course, I have gone down the rabbit hole better known as Dr. Google, and have come across mentions of Alzheimers. Has anyone ever experienced what I have described - specifically the hand gestures - with their parent or loved one?

this is all so overwhelming and devastating - so I apologize in advance if my writing is scattered.

thanks in advance for any advice or input.

[Anonymous]

There are so many reasons for the hand gestures. Many times my mother (87) has developed a new symptom and it has been a side effect of her multiple medications.

Please discuss this with her doctors rather than Googling or crowd sourcing.

[Anonymous]

I’ve gone through this with my parents. I don’t have anything to contribute re hand gestures but I wanted to send you some love and good energy. It’s very hard caring for declining parents, they’re really lucky to have someone like you who loves them. Stay strong. You’ll get through this!

[Anonymous]

Anonymous wrote:I’ve gone through this with my parents. I don’t have anything to contribute re hand gestures but I wanted to send you some love and good energy. It’s very hard caring for declining parents, they’re really lucky to have someone like you who loves them. Stay strong. You’ll get through this!

Thank you, I appreciate your kind words. It is so difficult - one of those experiences you never really understand until you go through it.

[Anonymous]

OP - crowdsourcing is sometimes helpful, I had the experience that my mother was drifting in and out of reality, the the AL residence she is at wrote it off at dementia. Turns out that someone else's parent had this and it was a side effect of wet macular degeneration. Sure enough it was true.

[Anonymous]

You need to consult with his doctors about the multiple falls, OP and remind his doctors of all his diagnoses and medications. Side-effects and combined effects of meds can mimic dementia disorders, and other diseases, and sometimes it's impossible to tell which is which.

[Anonymous]

Anonymous wrote:
You need to consult with his doctors about the multiple falls, OP and remind his doctors of all his diagnoses and medications. Side-effects and combined effects of meds can mimic dementia disorders, and other diseases, and sometimes it's impossible to tell which is which.

excellent advice, thank you. I am trying to help my mom navigate this from 3000 miles away.

[Anonymous]

One or two (perhaps three) diagnoses and medication side effects already--the odds that there is a third or fourth, independent, extremely dire diagnosis added onto all of this are probably quite low, but it all must feel very overwhelming.

The practical difference here may be minimal. I realize that this may be very unpleasant to think about, but it is also possible that what is happening with your dad's appetite is a signal that he is near the end of his life. It sounds like he is in the hospital now; it may be a good time to consult about hospice care.

Good thoughts to all of your family.

[Anonymous]

If he has myelodysplastic syndrome, he is likely low energy. It is similar or the same as not having enough red blood cells or energy.

I think you might ask the doctor for the true outcome for myelodysplastic syndrome. And visit soon if you are far away.

[Anonymous]

My dad does this. He has Parkinsons and it a side effect of one of his meds. He also gets hallucinations from the meds as well when he's awake. He knows they are hallucinations and they don't frighten him. The hand movements at night, while odd, do not impact his sleep from what we can tell.

The doctor said the benefit of the meds outweighs the hallucinations and that he doesn't want to change the meds unless the hallucinations begin to bother my dad.

[Anonymous]

Anonymous wrote:My dad does this. He has Parkinsons and it a side effect of one of his meds. He also gets hallucinations from the meds as well when he's awake. He knows they are hallucinations and they don't frighten him. The hand movements at night, while odd, do not impact his sleep from what we can tell.

The doctor said the benefit of the meds outweighs the hallucinations and that he doesn't want to change the meds unless the hallucinations begin to bother my dad.

You / your dad should inform the neurologist (Parkinson's doctor) about the hand gestures and hallucinations again. A low dose of Clonazepam at night may help reduce them, especially if there is any concern that the hallucinations or gestures might result in your dad flinging his arms out and possibly hurting your mom who is in the same bed with him.

[Anonymous]

What medications dad was on for the last 5 to 10 years? Perscrip and over thec.?

[Anonymous]

I work in a memory care and I’ve never seen the gestures — though I am mostly seeing residents asleep while upright in their chairs. I do know that the onset of dementia can cause violent dreams that can cause people to fall out of bed, etc.

Might one of his meds be causing the hand gestures? I’d speak to his doc (or whoever is authorized to do that).

[Anonymous]

I don't have any specific information. Just wanted to send hugs. No first hand experience with Parkinson's either but I was just reading Billy Connoly memoir "Made in Scotland",
I love his works so I got the book. I was surprised to learn that he has Parkinson's. In the book he, in his typical calming and relaxing laid back voice tells the stories and among them is one how he is coping with the progress of the Parkinson's. I think the power of his testimony is in the fact that he let people like me who know nothing about the disease helps to understand the struggles and some specifics. It is very important to have awareness of those who suffer as there are so many people who suffer from this.
I think that it could help you to gain some perspective and possibly even emotional support from this super gentle soul. His audio version is the best because it is red by someone who sounds totally like him so you feel the relaxing and calming voice that brings some peace and light into your soul. Here is the info from amazon but I am sure if you are interested you can get it anywhere really. The good thing about this page is that it lets you listen to a sample of the audio so you can hear what I am talking about.
He is 75 years old and he is no longer touring due to the disease. So chances of seeing him are diminishing. This is a wonderful legacy that he is leaving for us.

Best wishes and hugs to you and your Dad.
https://www.amazon.com/Made-Scotland-Grand-Adventures-Country/dp/B07GR38KH4/ref=sr_1_1?keywords=audio+books+connelly+billy&qid=1572126517&sr=8-1

[Anonymous]

Talk to the Doctors. Visit Mom and Dad.