Misssusan

New member
Mar 21, 2024
4
0
Hi, just joined this forum as I am increasingly needing to talk to others who may be experiencing the same issues caring for someone with dementia such as lack of sleep, being worried about my partner not knowing where he is, especially at night, and having lots of hallucinations plus restless sleep. He has Lewy body dementia but also Parkinson’s so a double whammy. He’s always falling asleep and in the last 2 weeks has fallen out of bed 3 times. He’s had a check for infection and awaiting results but I’m thinking his dementia is probably progressing quicker than I was expecting . He’s 68
Sorry for the long post
 

maggie6445

Registered User
Dec 29, 2023
1,037
0
Hi, just joined this forum as I am increasingly needing to talk to others who may be experiencing the same issues caring for someone with dementia such as lack of sleep, being worried about my partner not knowing where he is, especially at night, and having lots of hallucinations plus restless sleep. He has Lewy body dementia but also Parkinson’s so a double whammy. He’s always falling asleep and in the last 2 weeks has fallen out of bed 3 times. He’s had a check for infection and awaiting results but I’m thinking his dementia is probably progressing quicker than I was expecting . He’s 68
Sorry for the long post
Hi @Misssusan, welcome to the forum .
My OH has had some symptoms of Lewy body but dat scan was inconclusive so it was Alzheimer's with possible Lewy body. Have now been referred to the neurologist as symptom of parkinsonism are now showing.
I haven't had an unbroken night now in 3 months as OH is becoming incontinent and needs toilet help twice a night. My OH has restless legs as well so lots of kicking during his sleep.
I sleep lightly as I'm worried I'll miss him getting out of bed. I do have motion sensor lights in the bedroom which used to wake me up when he got out of bed but I'm so tired now that I'm not always aware from the lights alone. Going to get sensor mat that will sound to alert me to. Hopefully I'll get a better sleep. 🥱
 

maisiecat

Registered User
Oct 12, 2023
409
0
Hi @Misssusan , my husband has Parkinsons 19 years in and Parkinsons dementia and vascular dementia. He is now in a Nursing home. I don't think I had a full nights sleep for more than a decade. Our house was always like Blackpool tower and he roamed from midnight until about 4am. Frequently fell in the night and randomly cooked things.
Do you know if his hallucinations are related to his drugs or his Lewy body? Drugs called dopamine agonists are the usual culprits with hallucinations and an adjustment is worthwhile.
Saw the parkinsons nurse this week and they are going to a lot of effort to get my husband to sleep but we have lots of friends with Parkinsons and they mostly have sleep fracturing.
My husband was put in a Nursing home following a best interests meeting at the hospital. I wasn't consulted about it. One of the biggest factors was the night time disturbance as waking night carers are very expensive and it is thought that a relative carer can't be up all day and all night.
I hope you get some medical help but you will find the forum invaluable for the resource we can provide for each other.
 

Misssusan

New member
Mar 21, 2024
4
0
Hi @Misssusan , my husband has Parkinsons 19 years in and Parkinsons dementia and vascular dementia. He is now in a Nursing home. I don't think I had a full nights sleep for more than a decade. Our house was always like Blackpool tower and he roamed from midnight until about 4am. Frequently fell in the night and randomly cooked things.
Do you know if his hallucinations are related to his drugs or his Lewy body? Drugs called dopamine agonists are the usual culprits with hallucinations and an adjustment is worthwhile.
Saw the parkinsons nurse this week and they are going to a lot of effort to get my husband to sleep but we have lots of friends with Parkinsons and they mostly have sleep fracturing.
My husband was put in a Nursing home following a best interests meeting at the hospital. I wasn't consulted about it. One of the biggest factors was the night time disturbance as waking night carers are very expensive and it is thought that a relative carer can't be up all day and all night.
I hope you get some medical help but you will find the forum invaluable for the resource we can provide for each other.
Thank you. Sorry to hear about your husband.
Hallucinations for my OH are due to Lewy body dementia and consultant for Parkinson’s won’t put up sinemet dosage as may make hallucinations worse. However his tremors are getting considerably worse. The other consultant dealing with the dementia is trying increased dose of rivistigmine so hallucinations have decreased during day but this can cause increased tremors. Difficult to get a balance. Lack of sleep seems to be a common theme and last night he woke up , wetting the bed. Kylie sheets invaluable but think he may need pads in at night. He said’ I’m glad you were on a shift here’ as I was busy changing the bed and getting him to wash and change.! I didn’t go to sleep til 4am and he was up every hour going to the toilet. He never remembers things during the night either. I really worry about the future now.
Hope ur getting some much needed sleep now
 

Misssusan

New member
Mar 21, 2024
4
0
Hi @Misssusan, welcome to the forum .
My OH has had some symptoms of Lewy body but dat scan was inconclusive so it was Alzheimer's with possible Lewy body. Have now been referred to the neurologist as symptom of parkinsonism are now showing.
I haven't had an unbroken night now in 3 months as OH is becoming incontinent and needs toilet help twice a night. My OH has restless legs as well so lots of kicking during his sleep.
I sleep lightly as I'm worried I'll miss him getting out of bed. I do have motion sensor lights in the bedroom which used to wake me up when he got out of bed but I'm so tired now that I'm not always aware from the lights alone. Going to get sensor mat that will sound to alert me to. Hopefully I'll get a better sleep. 🥱
You sound so much like me with the lack of sleep. It’s so hard to function during the day isn’t it when uve only had a few hours sleep. Thank you for responding to my post. It helps knowing I’m not alone in experiencing these issues. Take care and make sure you get some time for you
 

maisiecat

Registered User
Oct 12, 2023
409
0
Thank you. Sorry to hear about your husband.
Hallucinations for my OH are due to Lewy body dementia and consultant for Parkinson’s won’t put up sinemet dosage as may make hallucinations worse. However his tremors are getting considerably worse. The other consultant dealing with the dementia is trying increased dose of rivistigmine so hallucinations have decreased during day but this can cause increased tremors. Difficult to get a balance. Lack of sleep seems to be a common theme and last night he woke up , wetting the bed. Kylie sheets invaluable but think he may need pads in at night. He said’ I’m glad you were on a shift here’ as I was busy changing the bed and getting him to wash and change.! I didn’t go to sleep til 4am and he was up every hour going to the toilet. He never remembers things during the night either. I really worry about the future now.
Hope ur getting some much needed sleep now
I am afraid that it a classic problem with any kind of Parkinson's dementia that if you drop the parkinsons meds to reduce the hallucination the parkinsons symptons worsen. Sometimes they do stabilise. The rivastigmine also needs some head room to get passed the parkinsons meds. In our case it was the Mirapexin a dopamine agonist which was the biggest problem. We have eventually got a balance but my husband is on the highest dose of rivastigmine so there will be problems down the track.
Yes I get sleep now and I realise how exhausted I had become but I can't say my life is enviable