We can't keep carers, because Mum won't sleep through the night. Help!

[Toodlepipfornow]

Hi all,
My mum, who has dementia, and who had live-in care until recently, is not sleeping through the night, despite her doctor prescribing sedatives, as a last resort.
The doctor doesn't understand why the sedatives aren't working, as he has prescribed the highest dose he dare.
Most care agencies will allow two wake-ups a night, some offer three but, more often than not, Mum is waking many more times than that.
We have stopped all care for the time being, because the carers can't cope (understandably), and we are trying to figure out what to do next.
Honestly, we are at our wits' end. Mum is like death warmed up after a night of hardly any sleep, and so are we.
None of us can go on like this, but we just don't know what to do.
Any and all advice would be greatly appreciated.
Thank you.

 

[maggie6445]

Hi all,
My mum, who has dementia, and who had live-in care until recently, is not sleeping through the night, despite her doctor prescribing sedatives, as a last resort.
The doctor doesn't understand why the sedatives aren't working, as he has prescribed the highest dose he dare.
Most care agencies will allow two wake-ups a night, some offer three but, more often than not, Mum is waking many more times than that.
We have stopped all care for the time being, because the carers can't cope (understandably), and we are trying to figure out what to do next.
Honestly, we are at our wits' end. Mum is like death warmed up after a night of hardly any sleep, and so are we.
None of us can go on like this, but we just don't know what to do.
Any and all advice would be greatly appreciated.
Thank you.

Sorry you are in this position. I guess a care home would solve your dilemma. There are day and night shift carers and she would have someone available to help 24/7. Not want you want to hear I suppose but it may be for the best if meds don't help. X

 

[Rosettastone57]

Hi @Toodlepipfornow others will be along soon with better advice, but my first reaction is that your mum needs 24/7 supervision in a care home. She would have a full team looking after her not frazzled family carers. There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. I think you have reached that point.

 

[Toodlepipfornow]

Sorry you are in this position. I guess a care home would solve your dilemma. There are day and night shift carers and she would have someone available to help 24/7. Not want you want to hear I suppose but it may be for the best if meds don't help. X

Thank you, maggie6445,
We've discussed a care home, but we can't all agree. Half the family want Mum to go into one, and the others don't.
We also feel that it would finish her off, but we're only basing that on the experiences of friends' parents after they've been admitted to a care home, ie; they didn't last long.
Taking this into account, we are really trying to avoid the care home route at the moment, but thank you for taking the time to reply.

 

[SeaSwallow]

Hello @Toodlepipfornow i am so sorry that you have found yourself in this position. It is very unlikely that they doctor will increase the medication because of the falls risk with sleeping tablets. I would agree with @maggie6445 and @Rosettastone57 that your mum probably needs 2/7 care, not just for her sake but for you as a family as no one can go for long without sleep.

 

[canary]

Unfortunately, people with dementia often develop a fractured sleeping pattern or day/night reversal because their internal body clock is damaged. When this happens sleeping tablets may not work because the problem is not insomnia.

You can get night awake cares as well as live-in staff, but this is eye-wateringly expensive. I honestly think that your only solution is going to be a care home where there are staff on duty, in shifts, night and day, which I guess you have been trying to avoid.

 

[Toodlepipfornow]

Hi @Toodlepipfornow others will be along soon with better advice, but my first reaction is that your mum needs 24/7 supervision in a care home. She would have a full team looking after her not frazzled family carers. There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. I think you have reached that point.

Thank, Rosettastone57,
I just replied to maggie's comment above yours, which is similar.
We are desperately trying to avoid a care home, so we're going to see if we can somehow work around it, but I think I'm hoping for a solution that doesn't exist!
Anyway, I appreciate your reply, so thank you for that.

 

[Toodlepipfornow]

Hello @Toodlepipfornow i am so sorry that you have found yourself in this position. It is very unlikely that they doctor will increase the medication because of the falls risk with sleeping tablets. I would agree with @maggie6445 and @Rosettastone57 that your mum probably needs 2/7 care, not just for her sake but for you as a family as no one can go for long without sleep.

Thanks, SeaSwallow,
My mum is only tiny -- she's weighs just over 5 stone, but eats well and is not malnourished -- so the doctor doesn't understand why the sedatives aren't working.
The risk of falls could be why he's not keen to prescribe a higher dosage, although he hasn't said as much.
The care home option is one we're trying to avoid, but we have some serious thinking to do.
Thanks again for your reply.

 

[Toodlepipfornow]

Unfortunately, people with dementia often develop a fractured sleeping pattern or day/night reversal because their internal body clock is damaged. When this happens sleeping tablets may not work because the problem is not insomnia.

You can get night awake cares as well as live-in staff, but this is eye-wateringly expensive. I honestly think that your only solution is going to be a care home where there are staff on duty, in shifts, night and day, which I guess you have been trying to avoid.

Thanks, Canary,
I had no idea that that could be why mum's not sleeping! No one, not even the dementia nurse, has mentioned it before.
Yes, we've been trying to avoid a care home, but a waking night carer plus a day carer might be an option.
Thanks for the inspiration!
And thanks again for the reply.

 

[chriskay]

Thank you, maggie6445,
We've discussed a care home, but we can't all agree. Half the family want Mum to go into one, and the others don't.
We also feel that it would finish her off, but we're only basing that on the experiences of friends' parents after they've been admitted to a care home, ie; they didn't last long.
Taking this into account, we are really trying to avoid the care home route at the moment, but thank you for taking the time to reply.

 

[chriskay]

I suggest you get the ones that don't want her to go in one to look after her. My partner has dementia and is up all night, stripping the bed off, going up and downstairs, getting dressed, getting undressed and it drives me mad. I would put him in a care home in a flash but Social Services dragging their heels. I'm mentally and physically drained so know how you feel.

 

[Jessbow]

I was going to say as above- get those that think care home isnt the answer to do the night shift

 

[maisiecat]

My husband has Parkinsons as well as mixed dementia. He is always up at night and has been since his diagnosis and I am being driven round the bend by various "experts" who see hime for a few minutes and change all the medication he needs for his Parkinsons. He's in a Nursing Home and his mobility has been wrecked.
My experience over many years is you can't sedate people out of sleep fracturing which is common both in Parkinsons and Dementia. It may be worth your Mum's mental health team reassessing her dementia drugs.
It will be essential is she does go into a Care Home that they are able to manage this behaviour.

 

[Violet Jane]

This comes down to money. In my experience, waking night carers are very expensive; they are not much cheaper than live-in carers. If you can afford both a live-in carer and a waking night carer then fine. If you can’t, then your options are: (1) a care home, (2) family members covering the nights and (3) family members covering the days and engaging a waking night carer for the nights.

Disrupted nights are one of the reasons that live-in care doesn’t work particularly well with clients with dementia.

You have to be practical. You can’t always have what you in the case of dementia. Everyone wants to keep their PWD at home but there comes a time when family and paid care isn’t enough. Care homes exist for a very good reason.

Get the family together and get them to focus on finding a solution.

 

[Bod]

@Toodlepipfornow
This sounds similar to my FiL.
We stopped all sleeping pills, both prescription, and over the counter, they didn't work for him, unless in big enough doses to send an elephant to sleep!
Work on why she is having disturbed nights.
Too hot
Too cold.
Too quiet/noisy.
Bed/nightclothes, uncomfortable.
Room too light/dark. (can you see a street light from her window)
Shadows in the room. (often in the shape of monsters, according to toddlers)
Hungry/over fed.
Try setting a definite bedtime. We had a room light on a timer, 10pm the light went off, time for bed.
All this will have to be investigated by you, as you have found she doesn't know.
With FiL the greatest success was he was hungry at bedtime, a round of toast and marmalade at 10pm, settled him well.
The bed, lie on it yourself, for at least 1/2 an hour, could you sleep on it?
Consider replacing it with a "Hospital" type bed, with an air mattress. It might be "her" bed that 40+ years old, but if it's worn out....

Bod

 

[Chizz]

Hi @Toodlepipfornow
What is your mum's quality of life like? Is she getting any time where she seems content or happy? Are there any small activities that she could join in - being read to, listening to music, etc?
If there are times when she enjoys something, try and expand it.
Get in a separate night carer who is just working a night shift and stays awake the whole time. It may be hard to find, and it will be at an expensive rate, but worth a try.
You say you are not happy with a care home, because people you know or know of have not lasted long in a care home - what do you want your mum to last long for? If it's more enjoyable quality of life, that's fine, but if she is not really enjoying life, but you want her to be around for your comfort then maybe you need to reconsider things.
Just my thoughts. No offence intended.

 

[maggie6445]

Hi @Toodlepipfornow , you have commented that friends family members haven't lasted long after going in to a care home. Sadly ,people go in to care usually at the later stage of life and are unlikely to live long regardless of where they live. It's the nature of dementia that 24/7 care will be needed towards the end and this stage is limited.

I hope this decision making won't split your family. You will need each other for support. Please don't let dementia destroy your family .

Hope you make the right choices for you all x

 

[Bettusboo]

I think can’t sleep rather than won’t is the best way to look at it. My dads sleep is all over the place because he has no sense of time or day or night. We tried waking night carers and that worked for a while. When we looked at the cost versus the cost of a care home, it wasn’t much more expensive. He is now in a care home but waking nights did work well for a while.

 

[SAP]

From what you have said in your reply to others it looks like the family have to get together and manage this. This can be either residential care, paying for night waking staff which is very expensive but might not be needed for too long or finally that everyone involved in the decision making takes a shift at being up through the night for her.

 

[Violet Jane]

One other thing that I wanted to say is that plenty of people live for several years in a care home. My mother was one. She lived for over four years and that’s not unusual. Many people live for a couple of years. Of course, there will be others who only live a short time. It will depend on all sorts of factors including age, other health problems and the stage and type of dementia.