Bewildered by the Speed of Lewy body, is this normal?

kmdaniels1

New member
May 13, 2024
3
0
Hi all, new here. My dad was diagnosed with Lewy body a few years ago, and up until the end of March this year, was about a "2" on the scale, forgetful, lost in the middle of a sentence, walked into a room and forgot what he was doing, but under support and care of my mom, lived well at home with her (did dishes, took walks, worked out in the garden, etc). He had a hospital stay due to an internal blockage at the end of March (he is also on massive other drugs to a restless leg disorder). Long story short, when hospitalized, because he had an NG tube and couldn't take his medicine, he had this horrible 5 day withdrawal, they had to strap him to the bed, he literally went crazy, worst thing I've ever seen. We worked through the blockage, and he went to rehab, but accelerated so fast into dementia it was almost unreal, now just two months later, he is living in a Dementia facility, I would consider him a 7-8 on the dementia scale - he can barely walk, falls all the time, is aggressive and angry and sad and depressed - every day he is spiraling worse and worse. IS THIS NORMAL? I know there is no normal with dementia, but did anyone else's loved one suffer this rapid of a decline, two months moving from a 2-8 on the dementia scale? He doesn't sleep more than 15 minutes at a time, and is restless and agitated, we need to get his meds right, and I know there is no going back but I am so curious about how fast this spiral went and how long it continues? It is pure, worldly hell he is going through (and our family watching him), I just can''t believe we are here. Thanks for any advice.....KD
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
7,024
0
Hello @kmdaniels1 and welcome to the Dementia Support Forum. I am so sorry to read about your dad and the rapid change in his condition, this must be truly awful to watch especially as your dad was doing well before he took ill.

Unfortunately when someone with dementia is ill and hospitalised it can cause a downturn in their condition. In your dad's case this would be worse because of his medication being withdrawn for the five days. Hopefully the doctors at the memory care facility will be able to get his medication sorted and your dad may improve but there is no guarantee that he will get back to where he was before he was hospitalised. It might be useful for you to have a talk with the doctors at the memory facility to see what advice they can give you.
 

canary

Registered User
Feb 25, 2014
25,560
0
South coast
Hi @kmdaniels1

I'm sorry to hear about your dad. I'm wondering whether the illness, hospitalisation, etc caused delirium. Delirium can massively progress dementia symptoms and although it can improve it can take up to 6 months and they very seldom get back to the level they were at before. Sometimes I'm afraid that it doesn't improve at all.
 

kmdaniels1

New member
May 13, 2024
3
0
Hello @kmdaniels1 and welcome to the Dementia Support Forum. I am so sorry to read about your dad and the rapid change in his condition, this must be truly awful to watch especially as your dad was doing well before he took ill.

Unfortunately when someone with dementia is ill and hospitalised it can cause a downturn in their condition. In your dad's case this would be worse because of his medication being withdrawn for the five days. Hopefully the doctors at the memory care facility will be able to get his medication sorted and your dad may improve but there is no guarantee that he will get back to where he was before he was hospitalised. It might be useful for you to have a talk with the doctors at the memory facility to see what advice they can give you.
Thank you, sorry I just saw this. The facility talked with us about hospice and we decided to put him on it, there is not a quick end in sight, but since his decline is so rapid we are getting on that program now as a support and resource and also to be ready when the time comes. It's just baffling how quickly he declined, literally 8 weeks. I know a lot of is his meds, with his restless legs he has an added layer of many opioids he has been on for years (which I think lent to his dementia but that is my POV). Anyhow, just horrible to watch them living out hell here on earth. He is still in a place where he is sad, crying, angry confused and bewildered - he just wants to go home but it starting to be unable to articulate it, but its clear what he is trying to convey. hearthbreaking. Take care
 

kmdaniels1

New member
May 13, 2024
3
0
Hi @kmdaniels1

I'm sorry to hear about your dad. I'm wondering whether the illness, hospitalisation, etc caused delirium. Delirium can massively progress dementia symptoms and although it can improve it can take up to 6 months and they very seldom get back to the level they were at before. Sometimes I'm afraid that it doesn't improve at all.
I think that is what we have to come to accept, as hard as that is. I have never heard of this hospital delirium, I think it's something we need to be more aware of with our elderly/dementia patients who go in to the hospital. Its so awful
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
7,024
0
Thank you, sorry I just saw this. The facility talked with us about hospice and we decided to put him on it, there is not a quick end in sight, but since his decline is so rapid we are getting on that program now as a support and resource and also to be ready when the time comes. It's just baffling how quickly he declined, literally 8 weeks. I know a lot of is his meds, with his restless legs he has an added layer of many opioids he has been on for years (which I think lent to his dementia but that is my POV). Anyhow, just horrible to watch them living out hell here on earth. He is still in a place where he is sad, crying, angry confused and bewildered - he just wants to go home but it starting to be unable to articulate it, but its clear what he is trying to convey. hearthbreaking. Take care
I am pleased that you are getting some support, that should ease some of the burden on you.