It’s about sleep?

[CoastalPair]

It’s about sleep?


Why is it that the medical profession refuses to help, is it because they simply don’t care, (which is the way I am left feeling whenever I talk to them), or are they just incapable. It doesn’t matter whether you talk to the memory clinic, or the GP, the response is always the same.


After more than three years of watching the progressive decline in my wife’s mixed dementia we have reached a point where unbroken sleep is a long distant memory.


Now we live with a normal cycle of about ten nights where, by 3pm, she insists on going to bed, but refuses to on her own, after an hour of sleep, where I sit next the her and read, she will get up, wander around the house, moving things about, then getting dressed, (which is normally putting clothes on top of clothes, three pairs of jeans, four sets of underwear on the outside, none of which can be challenged or persuaded out of). She will get back into bed, then an hour later we are up again, this happens up to eight or nine times a night. We are always up around two in the morning. This makes sleeping for me as her only carer impossible. After ten days of this we then get three whole days of no sleep whatsoever, three nights of confusing, anxious delusions, three days of marked deterioration.


Finally after almost two weeks, her body gives up and she will sleep solidly for ten or twelve hours.


The following day is amazing, she is happy, bright and a lot like her old self, obviously there are still the problems with memory and skills but they definitely seem so much better, we can have a conversation and do things together.


So… although it is only anecdotal, a solid night’s sleep is proving to be the only thing that actually helps with all the symptoms, and yet the medical professions will not help with the issue of sleep. Their answer is, “we don’t like to medicate to aid sleep, but she can have some antidepressants”. It doesn’t matter to them, that myself as her only carer is always majorly sleep deprived, feeling completely exhausted all of the time, and, incidentally increasing the risk of dementia in my own future.


So now that I have finally finished moaning, does anyone have any workable ideas to improve sleep, we have tried a lot, daylight lamps, vitamin D, keeping her active all day, etc, etc.


Nothing seems to work, and respite, where we live is non existent, unless you are prepared to sell off significant body parts to pay for it, so what is the answer?

 

[Grannie G]

Doctors hesitate to prescribe tablets to aid sleep @CoastalPair because they increase the risk of falling.

I suppose you have tried warm milky drinks, soothing music , relaxation tapes.

My husband used to have his best night's sleep on Sundays when we listened to Harmony Night on Radio Kent. He lay in bed while the radio was on and I used the computer at his bedside. Many a time he would say `beautiful music` just before he went to sleep.

I sympathise.

 

[CoastalPair]

Thank you Sylvia, yes we have gone done the Horlicks route with no visible benefit. I do appreciate that mediation for sleep might have an unwanted side affect, but that’s true of all medication, there is always a trade off.
M…

 

[Clairey51]

Hi CoastalPair
I think it depends on what your G.P is like. I had no problems getting sleeping pills for my mum and she is on the highest dose, it came down to my health in the end, I suffer from epilepsy which is brought on through sleep deprivation so I just couldn't manage her up at all hours of the night.
Maybe make a G.P appointment for yourself and explain it all to them and they may be willing to prescribe for her that way.
As for risk of falls mum had no after effects at all, and she still gets a good 12-13 hour sleep and she has been on them for 3 years.

 

[CoastalPair]

Hi Clairey51
Thank you, that’s an idea I had not thought of.

 

[canary]

The problem with dementia and not sleeping is that the normal internal body clock becomes damaged, resulting in a fractured sleeping pattern. Because its not insomnia it is difficult to predict what effect sleeping tablets will have. In some cases it works fine; others it has no effect at all; some people become extremely unsteady on their feet and others go into a zombie like state. And there is no way of knowing which group someone will be part of.

 

[LLHFG]

@CoastalPair sorry. Am waking with you. I'm on my own at night but have the luxury of a live in in the morning, but can't sleep then myself either so the sleep issue is foremost in my mind. Not helped by the scary news items on health consequences of disturbed sleep.

Like you have encountered a reluctance from GPs to engage on the sleep issue, mine after I contacted with an enquiry re melatonin, refused that and prescribed 2 weeks of zoplicone to 'reset' but no more.... " as it can be addictive". As it happens zoplicone just means Mum doesn't remember falling to sleep but doesn't prevent REM sleep disorder or waking every hour during a normal night. Her sedative/anti-agression meds which I'm advised by the Dementia Intensive Support team can be given to encourage sleep (promethazine) also has no effect whatsoever.

I think the pattern you describe is very much what I expect, but when total exhaustion leads to a longer respite this doesn't help much does it?.....because then you are worried for the lack of motion, and listening for it...

I have one saving grace, that my PWD cannot walk (though she can get/fall out of bed). I can't quite imagine the wanderings.

The comments on here above are more helpful than my musings, just wanted to say Hi and take care.

 

[CoastalPair]

The problem with dementia and not sleeping is that the normal internal body clock becomes damaged, resulting in a fractured sleeping pattern. Because its not insomnia it is difficult to predict what effect sleeping tablets will have. In some cases it works fine; others it has no effect at all; some people become extremely unsteady on their feet and others go into a zombie like state. And there is no way of knowing which group someone will be part of.

Dear Canary
Thank you for the response, it is appreciated. It does highlight the problems, however my point, after the second day in a row where sleep has been impossible is that our local medical professionals are simply unwilling to even try and help. We might be among the percentage of those that can be helped, but we will never know and just left to sink.

 

[Lawson58]

Apart from dementia, my husband also has cardiac failure, declining kidney function and takes multiple medications . He also has eczema requiring a variety of lotions and potions.

In the last few months, we too have started the broken sleep patterns and if he doesn’t need to go to the toilet, his feet are too cold, he just can’t sleep, his hands are cold, he has reflux and it goes on and on.

I understand that for my husband, adding in yet another medicine is enormously complicated and needs really good management. So our GP is absolutely against it and as he has been our trusted doctor for many years, we have to accept that.

On the positive side (if you could call it that) I have been an insomniac for many years and have taken a sleeping pill every night for decades. Even though he does disturb me, he is quite used to not getting any response from me if it’s not an emergency so tends to leave me alone.

In my efforts over the years to avoid using sleeping pills, I have tried everything from herbal remedies, relaxation techniques, routine preparation such as regular bedtime etc etc etc. I found that hypnosis was helpful in training me to get back to sleep if I woke up but obviously that is probably not going to work for your wife.

I also find that I leave the radio on all night but not tuned into music as I find it stimulates me too much. I leave it on to a station that has news, interviews, discussions and programs that only has the human voice.

I am sorry I can’t offer any advice but you really do have my sympathy.

 

[Mumlikesflowers]

I will come back to all of this thread later, as it's a great deal of interest to me, but I think the point is valid that, when all the factors weighed up, the view on the sleeping pills route needs to be different. I'm not sure it's that they don't care but certainly it's not their partner and they would see it differently then. I have been grateful on one level that our prescribing has been guided by this desire not to increase drowsiness and the risk of falling. But if all other options are closing and you the carer can't function, then the clinical decision needs to be a different one. But you can see that puts them in a vulnerable position to go against the guidelines. But to be truly person-centred, they may need to be. What about an advocate to support you in your discussions with them?

 

[sunshine chrissy]

It’s about sleep?


Why is it that the medical profession refuses to help, is it because they simply don’t care, (which is the way I am left feeling whenever I talk to them), or are they just incapable. It doesn’t matter whether you talk to the memory clinic, or the GP, the response is always the same.


After more than three years of watching the progressive decline in my wife’s mixed dementia we have reached a point where unbroken sleep is a long distant memory.


Now we live with a normal cycle of about ten nights where, by 3pm, she insists on going to bed, but refuses to on her own, after an hour of sleep, where I sit next the her and read, she will get up, wander around the house, moving things about, then getting dressed, (which is normally putting clothes on top of clothes, three pairs of jeans, four sets of underwear on the outside, none of which can be challenged or persuaded out of). She will get back into bed, then an hour later we are up again, this happens up to eight or nine times a night. We are always up around two in the morning. This makes sleeping for me as her only carer impossible. After ten days of this we then get three whole days of no sleep whatsoever, three nights of confusing, anxious delusions, three days of marked deterioration.


Finally after almost two weeks, her body gives up and she will sleep solidly for ten or twelve hours.


The following day is amazing, she is happy, bright and a lot like her old self, obviously there are still the problems with memory and skills but they definitely seem so much better, we can have a conversation and do things together.


So… although it is only anecdotal, a solid night’s sleep is proving to be the only thing that actually helps with all the symptoms, and yet the medical professions will not help with the issue of sleep. Their answer is, “we don’t like to medicate to aid sleep, but she can have some antidepressants”. It doesn’t matter to them, that myself as her only carer is always majorly sleep deprived, feeling completely exhausted all of the time, and, incidentally increasing the risk of dementia in my own future.


So now that I have finally finished moaning, does anyone have any workable ideas to improve sleep, we have tried a lot, daylight lamps, vitamin D, keeping her active all day, etc, etc.


Nothing seems to work, and respite, where we live is non existent, unless you are prepared to sell off significant body parts to pay for it, so what is the answer?

At the moment my husband doesn't sleep for more than an hour at a time and never in the day,not even a short nap!He has FTD and just can't sit still for more than 10 mins.I've tried everything,milky drinks,clean bedding(we have seperate rooms now)low music,nothing works.He's been on sertraline for a year,I've phoned his consultant about everything and she's now put him on mirtazapine,2 days in and no difference,takes 2 weeks or so to take effect but here's hoping,his body needs sleep or he'll collapse from exhaustion!

 

[Lin B]

It’s about sleep?


Why is it that the medical profession refuses to help, is it because they simply don’t care, (which is the way I am left feeling whenever I talk to them), or are they just incapable. It doesn’t matter whether you talk to the memory clinic, or the GP, the response is always the same.


After more than three years of watching the progressive decline in my wife’s mixed dementia we have reached a point where unbroken sleep is a long distant memory.


Now we live with a normal cycle of about ten nights where, by 3pm, she insists on going to bed, but refuses to on her own, after an hour of sleep, where I sit next the her and read, she will get up, wander around the house, moving things about, then getting dressed, (which is normally putting clothes on top of clothes, three pairs of jeans, four sets of underwear on the outside, none of which can be challenged or persuaded out of). She will get back into bed, then an hour later we are up again, this happens up to eight or nine times a night. We are always up around two in the morning. This makes sleeping for me as her only carer impossible. After ten days of this we then get three whole days of no sleep whatsoever, three nights of confusing, anxious delusions, three days of marked deterioration.


Finally after almost two weeks, her body gives up and she will sleep solidly for ten or twelve hours.


The following day is amazing, she is happy, bright and a lot like her old self, obviously there are still the problems with memory and skills but they definitely seem so much better, we can have a conversation and do things together.


So… although it is only anecdotal, a solid night’s sleep is proving to be the only thing that actually helps with all the symptoms, and yet the medical professions will not help with the issue of sleep. Their answer is, “we don’t like to medicate to aid sleep, but she can have some antidepressants”. It doesn’t matter to them, that myself as her only carer is always majorly sleep deprived, feeling completely exhausted all of the time, and, incidentally increasing the risk of dementia in my own future.


So now that I have finally finished moaning, does anyone have any workable ideas to improve sleep, we have tried a lot, daylight lamps, vitamin D, keeping her active all day, etc, etc.


Nothing seems to work, and respite, where we live is non existent, unless you are prepared to sell off significant body parts to pay for it, so what is the answer?

I think it must be down to GP. Our nights were getting so disturbed. Wandering around the house and packing a bag to go home at 2am. In the end I phoned our local carers association and I admit I was in tears as it was all very new to me. They were very good and got a GP to call me. She prescribed Trazadone for my husband, a very low dose to start with which has since been doubled at the request of his Neurologist. I think Trazodone is more of a relaxant than a sleeping tablet. Hubby has the medicine about 3/4 hour before he normally goes to bed and it seems to work well. My hubby is still quite young, 69 years old, and is physically still strong and quite stable on his feet. I haven't seen any side effects but everyone is different. I do hope you get some help - it is so much easier to cope with all the stress of other dementia symptoms if you are able to sleep yourself.