Chronic insomnia

[ShrinkingViolet]

my 83 yo mother is in a care home. She has AD and vascular dementia.
Six weeks ago she stopped sleeping. She now sleeps for less than two hours in 24 and seldom for longer than 45minutes in one go. The GP has tried different sedatives and sleeping tablets but nothing makes any difference.
She is restless and sometime agitated too, pacing all the time to the extent that her legs are constantly swollen.
No one seems to know what’s happening: none of the staff have seen
this before and even the CMH and specialist dementia team are stumped. Has anyone else out there witnessed this? Can anyone help?

 

[Linbrusco]

My Mum is in a care home and has Alzheimers.
Similar happened to her earlier this year, but it turned out to be a UTI.
There is gentleman there who is awake for 48 hrs but not pacing or agitated, and on third day sleeps 24hrs. Hes been like this for a year. Staff fill him with food & fluids on the awake 2 days, and they do wake him for a drink and change his inco pads on the sleep days but he goes straight back to sleep

 

[Louise7]

Has your Mother been checked for pain? My Mum suddenly started constantly pacing, was severely agitated and wouldn't sleep. The mental health team tried various medication over a period of 5 months and nothing helped. An x-ray has recently identified a compression fracture to the spine (the hospital missed it!). This is apparently due to osteoporosis and is common in the elderly. It can happen easily, not necessarily due to a fall, and can be very painful. Now that Mum is on pain relief the agitation/pacing has stopped and she is sleeping at night. It's not always easy to identify when someone with dementia is in pain, and the pacing could be because it is helping to relieve the pain. It's worth the GP checking for this and maybe even trying some pain relief medication to see if that helps?

 

[ShrinkingViolet]

Has your Mother been checked for pain? My Mum suddenly started constantly pacing, was severely agitated and wouldn't sleep. The mental health team tried various medication over a period of 5 months and nothing helped. An x-ray has recently identified a compression fracture to the spine (the hospital missed it!). This is apparently due to osteoporosis and is common in the elderly. It can happen easily, not necessarily due to a fall, and can be very painful. Now that Mum is on pain relief the agitation/pacing has stopped and she is sleeping at night. It's not always easy to identify when someone with dementia is in pain, and the pacing could be because it is helping to relieve the pain. It's worth the GP checking for this and maybe even trying some pain relief medication to see if that helps?

Thanks for sharing.
She doesn’t appear to be in pain but, as you say, that means nothing. They have her on pain medication for her back and CH staff suggested trying something stronger but the GP refuses to prescribe a patch because of the opiates.., apparently.

 

[Louise7]

A patch wasn't good for my Mum, but they can be tolerated by some. It's a case of trial & error with pain medication unfortunately. Mum's on codeine now and this seems to be the best option in terms of treating the pain with least side effects, although it's not perfect. Maybe the dosage of your Mum's current medication could be increased, or has the GP already tried that?

 

[Kevinl]

I'd say it is pretty common and am frankly amazed the staff have never seen it before.
Several of the residents don't go to bed for days (or nights) at a time just wander the home or nap for 30 minutes in a chair then they're off again.
Many of the visitors tell stories of how they had to copy with a partner who didn't sleep more than a short time and how doctors are unwilling to prescribe anything for it, the home don't use medication for the none sleeps as; it makes them a bigger fall risk, only works for so long then they become ineffective and medicating people for "convenience" isn't allowed so the night staff just have to monitor them.
I find it really strange that a quite common behavioural issue like this has left the specialists confused it's a very common thing to see not just in the later stages, if anything it's more common in the earlier stages.
Given the number of threads on here about people caring for an insomniac PWD I'm gobsmacked that the "professionals" have never come across it before, it's not a something that happens to everyone it certainly has happened to a lot of us, getting up 10 times a night or waking up and finding your partner up and dressed at 3am ready to go out.
Fortunately (for me) I never bothered as I don't sleep too well either so it wasn't uncommon to find us shopping in Tesco at 4am, or maybe Asda as they have an all night MacDonalds so we could go for a burger and a coffee too after the shopping.
K

 

[VerityH]

Has your Mother been checked for pain? My Mum suddenly started constantly pacing, was severely agitated and wouldn't sleep. The mental health team tried various medication over a period of 5 months and nothing helped. An x-ray has recently identified a compression fracture to the spine (the hospital missed it!). This is apparently due to osteoporosis and is common in the elderly. It can happen easily, not necessarily due to a fall, and can be very painful. Now that Mum is on pain relief the agitation/pacing has stopped and she is sleeping at night. It's not always easy to identify when someone with dementia is in pain, and the pacing could be because it is helping to relieve the pain. It's worth the GP checking for this and maybe even trying some pain relief medication to see if that helps?

My dad is currently in hospital following distinct lack of care in his care home, and his pain has increased exponentially to the point where he can't move without screaming or even turn over in bed, due to a fracture at the base of his spine same as your mum caused by osteoporosis - they don't know when the fracture happened (can't say whether days, weeks, months …) but this pain only got this bad a couple of weeks ago. He also has a suspected kidney infection, not surprising as he had blocked urinary tract a couple of weeks ago and needed catheter (again care home did not react till it got to blue light problem and my poor sister gets the call out as she's closest - poor thing should just take a cool box and a sleeping bag with her everywhere she goes at the moment as she spends a lot of time in the hospital - me too but I take an hour and a half to get there …). I think dad needs nursing care now as he can't move on his own and can't move to get up and toilet himself, so is getting constipated and infections. My mum is in a different care home also with dementia. This other care home is light years apart from dad's in terms of good quality care, but is pricey. The nursing home section will cost us another £500 pw for dad, but I'm ready to put him in there. The manager says in her opinion he needs nursing care, and she is happy to apply for the £157pw nursing contribution for him. Now just got to convince my sister, who is more worried than me about the money running out. I've worked out that when we sell their house we should have enough money for both of them in the expensive home for nearly 5 years, and I can't realistically see them lasting much more than that if at all..... Isn't this govt policy of funding physical but not mental illness godawful? If mum had a heart condition and dad had broken his leg, they'd get everything for free. Oh blimey, here I go again on another rant … I'll stop now before I get boring again!

 

[Jayjoe8985]

my 83 yo mother is in a care home. She has AD and vascular dementia.
Six weeks ago she stopped sleeping. She now sleeps for less than two hours in 24 and seldom for longer than 45minutes in one go. The GP has tried different sedatives and sleeping tablets but nothing makes any difference.
She is restless and sometime agitated too, pacing all the time to the extent that her legs are constantly swollen.
No one seems to know what’s happening: none of the staff have seen
this before and even the CMH and specialist dementia team are stumped. Has anyone else out there witnessed this? Can anyone help?

Hi shrinking violet, my mum is 82 and I'm experiencing similar problem only my mum lives with me and my husband. Like your mum, (but not as bad) my mum sleeps for short periods maybe 2 hours then is awake agitated and wanting to be busy. It is driving us potty. The sleep deprivation is killing us. Reluctantly we got mum on antipsychotic s and sleeping tablets which have helped moderately. Sleep is still a massive issue for us and if it doesn't improve mum will have to go in a home. We don't let her sleep in the day not even a dozen if it's possible to stop it. We try to get as much fresh air as poss and make her walk (even though shes unsteady - I have to hold her hand). Also try to avoid caffeine or any drink after 6 and keep her her up as late as possible. Yes it's a nightmare.

 

[ShrinkingViolet]

Thanks all for your input.
I too am amazed the home seem to think this unusual given your responses.
They have tried her on Melatonin which seemed to work for a few nights but she's back to not sleeping and wandering the corridors. I don't know how long a body can survive without proper sleep but it's her agitation which is most upsetting. She looks so tired and is incoherent from lack of sleep, hallucinating her legs are swollen and nothing seems to help.