Sleepless, restless nights - any suggestions?

Discussion in 'I care for a person with dementia' started by cabseddy, Mar 25, 2015.

  1. cabseddy

    cabseddy Registered User

    Mar 25, 2015
    Hi there. I am new to this forum, so thanks in advance for reading this.

    My 75 yr old Mum was diagnosed about 9 years ago. My 84 year old Dad is her full time sole carer, but my sisters and i do what we can to help give him a break. She is in general good health, but is starting to lose some mobililty (shuffles, falls a lot), can no longer communicate effectively as she only speaks nonsense (except in a very highly agitated state when she can sometimes be quite clear). She has all the usual mood swings, agitation, hallucinations etc. All of this my Dad can cope with during the day time because until recently she slept well at night.

    However, over the last couple of months, she has just stopped sleeping. It started where she would go to bed, then get out several times and then eventually about midnight would fall to sleep and sleep right through to about 9am. But now, she goes to bed and either constantly tries to get out of bed and falls over, or she talks incessantly (all garbled) all night. This can go on from about 7pm to 7am with not a wink of sleep.

    The GP prescribed Zopiclone 7.5mg a couple of weeks ago but if anything they have made the situation worse, as she is falling a lot more when she gets out of bed, or just falls out of bed. The talking has got worse. She must be so exhausted but we can't understand why she just won't sleep. She doesn't even have a nap in the day time.
    My dad is really struggling to cope with this, but really wants to keep her at home for as long as possible.

    The GP has said there is nothing else at all he can do to help, he can't prescribe anything further.

    We are considering night time care at home, or respite, or even full time nursing home, but my Dad is concerned how a night-time carer would deal with it, because if she can't be any further sedated, how will they deal with her constant wandering and chattering.

    I am most grateful for any suggestions, or to hear of any similar experiences and how you coped with it.

    I think the honest truth is that it is now beyond all of us, my Dad has been simply amazing through all of this, but he cannot cope with the sleep deprivation and we don't want him too. We want him to try and have some semblance of a life.

    Thanks very much
  2. Tin

    Tin Registered User

    May 18, 2014
    A nursing agency may be better. In theory a night time carer or nurse would not sleep and therefore would be able to assist/shadow your mother around the house, giving your father time to catch up on much needed sleep. This is exactly what a nursing friend of mine does, she works 3 nights a week from 9.30pm to 6.30am.
  3. gmama

    gmama Registered User

    Nov 25, 2014
    South Lanarkshire
    Hi this is what my MIL has being doing alot recently and last night was our worst. The doctor has now given her lorazepam and I have just given her one. We are waiting on a visit from a CPN and they will take a look at her meds and see if any changes can be made, I have been wondering for sometime now if they were even doing anything for her as she was diagnosed 10 year ago and been living with us for 6 years and was put on rivastigmine patches when she came to live with us as the tablets were making her very sick. But yes it does make us think too if this does not calm down, it may be time to think of looking for a care home, like your dad though we really want to keep her here as long as we can. I think the night time care sounds like a good option for your dad and yourselves for now.. x
  4. cabseddy

    cabseddy Registered User

    Mar 25, 2015
    Thanks both for your replies. I think it is definitely worth trying the night care, I think my dad is worried that he will hear everything anyway and that he won't be able to not intervene. We need to find out if we can get any funding at all for this kind of care. We are waiting on various assessments right now. My dad has coped all this time and when their consultant retired several years ago and the memory clinic closed, sadly Mum fell between the cracks because dad just wouldn't ask for help. It seems GP's are only reactive not proactive in our experience.

    Mum has been on Lorazepam for a while now, it worked really well to start but it doesn't really seem to do anything. It's like she is almost superhuman with her ability to stay awake!

    Good luck with your MIL - I really hope it works for her.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    She may need a combination of sleeping pill and med to stop the agitation. I am sure there are several such drugs. My husband takes Zopiclone at night and Trazodone twice a day. He rarely sleeps during the day but sleeps reasonably well at night now.
  6. Amber 3

    Amber 3 Registered User

    Feb 4, 2015
    South Devon
    My husband was up most nights pacing around and not sleeping all night. Also had the mood swings and agitation plus hallucinations. After a particularly nasty episode when my husband punched me in the face and I finished up in A&E things seem to get kick started in to action !
    GP contacted dementia specialist who visited us at home and my husband was prescribed a low dose of diazepam 2mg. This seems to be working as for the last 3 nights he has slept right through the night which is such a relief for me as well as him !! I have been told I can increase the dose if needed. At first I was told that diazepam was not prescribed for dementia patients as there may be a risk of heart attack or stokes, but after the A&E episode the GP told me it was time for a rethink !!
    Not sure if this would work with your Mum but may be worth asking the question ?
  7. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    sleep problems

    My mum has alzheimers and sleeps nearly all day ( except when shes shouting) but at bedtime she was going to sleep about 10 oclock but be shouting again a couple of hours later. Our mental health nurse suggested giving her an anti histomine pill like piriton cos they make u sleepy. Well we tried this and for the most part it works!! She now sleeps till abt 7 most days. Give it a go. Everything is easier to cope with if u get a good nite sleep. X
  8. cabseddy

    cabseddy Registered User

    Mar 25, 2015
    Very reassuring to know it's not just us going through this. I think my Mum needs a medication review as I can't believe GP just won't do anything else. Perhaps we need a CPN to help. We currently don't have one of those. We have been advised to get a new referral to a consultant, but I guess that could take months. We have an Admiral Nurse, Social Worker, District Nurse and Health and Socialcare Co-ordinator just on the scene these last two weeks, despite them all being lovely and very helpful they all give conflicting advice! We feel like we are going round and round in circles!

    Thanks for the antihistamine tip - that is definitely worth a try as long as it doesn't react against any of the other meds she is taking - guessing it wouldn't.

    Thanks again everyone, really helpful to hear your thoughts and experiences.
  9. Mannie

    Mannie Registered User

    Mar 13, 2014
    Bracknell area
    My parent's sleep was disturbed right after suffering a chest infection. We re-engaged the CPN , and she referred us back to GP, then they *both worked together* to come up with a plan. We were prescribed trazadone which is not a sleeping tablet but like antihists it has similar effect . We were advised to build up . Adverse side effect is sleepiness in the day. We have no choice because his partner was also losing so much sleep.

    At first we didnt know what to do and the live-in carer was getting woken 5 times per night. This could not continue we were told that the live in carer could have broken sleep on max 2 nights per week,so we engaged a waking nights carer as it was private it cost 125 pounds per night for 5 nights.

    Once the trazadone made things a lot better , we stopped the waking night carer , and we used a day center to give the live-in carer a break instead, during two days.

    The doctor should not say that there is no way forward, they need to discuss with a CPN, your GP can get your parent referred to get a CPN.

    What I always think is, they must have means to handle this in care homes... so I demand the similar for my parent living at home !!!

    Howver it may take some time, several visits, discussions bwteeen CPN and GP to get it gradually sorted out, it took us 8 weeks.

    We are also allowed to increase the dose as a *strategy* in case we have a run of sleepless nights which affect everyone !

    Also we have been told exercise and fresh air, and especially morning sunlight are needed to regulate the daily body cycle. So we included in the Care Plan, that the live- in must incorporate this into daily schedule, with our help.

    We still have a bit of a problem with night incontinence which I think is causing wakefullness and also when the pad needs changing it disturbs the household. We have not got a solution to that but I am just reading around it.
  10. Rozlynn

    Rozlynn Registered User

    Oct 8, 2011
    My husband has recently started not sleeping well just like your mum. He has been prescribed zopiclone in conjunction with melatonin. I have stopped giving him the zopiclone as it didn't seem to be working very well and two different pharmacists have told me that it can a) produce exactly the sort of behaviour you are trying to suppress and b) it stops working after a short period as the body comes to rely on it and needs more and more to induce sleep. My husband just has the melatonin now and that seems to enable him - and me!- to sleep for two 3 or 4 hour chunks. Might be worth considering?
  11. Rozlynn

    Rozlynn Registered User

    Oct 8, 2011
    Jointly app

    Re the plethora of experts all contradicting each other it might be worth using the Carers UK app "Jointly" which you can download either free or at low cost. it enables you to set up a "circle" for the person you care for and include all those who are helping care for them. Only they have access to the information, of course, it's not open to all and sundry! You are the "controller" and can input all the relevant info about the person you care for - medications, activities, people who need to be contacted in an emergency, history etc. Plus you can add in messages about latest developments, problems, appointments etc so that everyone can see what's going on, you don't need to tell everyone separately and they can, perhaps(??!!) start to act together to support the person with dementia. I really recommend it.

  12. #12 DazeInOurLives, Mar 30, 2015
    Last edited: Mar 30, 2015
    Melatonin has proved to be a wonder-drug for my Mum


    my Mum was in a similar position last year, but there is at least one way that may help you all and hopefully keep your Mum at home for longer without breaking you all.

    Poor quality sleep at night can dramatically reduce the following day's cognitive functioning and mood of us all, most especially a person with dementia. Very quickly the sleep cycle can be reversed, at best. However, a state of exhaustion (in everyone) can lead to a person needing to be admitted into hospital for assessment or into care, often no longer able to return home. This happened to my poor Dad (two people with alzheimer's in one household for years can be a deadly cocktail).

    Traditional sleeping medications, both older and newer types run a significant risk of causing increased drowsiness without reducing the tendency to want to get up, leading to increased falling, just as you have found.

    However, there is some research that shows that melatonin can have an effect in improving the quality of night time sleep for people with dementia. In my Mum's case, the effect was dramatic and occurred literally overnight. Everything improved for her, her recall, her cognitive function and her mood. It was as if we got her back; her disease appeared to reverse by approximately 8 months (this was 13 years into her azheimer's). Everyone seeing my Mum thought that a miracle had happened.

    Your mum's GP and/or CPN may need some persuasion to prescribe melatonin as it is not widely used yet in these situations, but in Mum's case the results were so fast and so dramatic that it would have been unethical not to have continued with it.

    Melatonin needs time off it for it to continue working, so once a regular night pattern has been re-established, try skipping it as often as you can get away with in order to keep it working.

    The other thing to consider is the use of a bed rail. This needs to be very carefully assessed and, for safety, temporary night carers might be in a position to do that. In my Mum's case, she had a tendency to drop her feet over the edge of the bed and this would lead her either to sit on the edge of the bed for hours at night, or her legs would pull her out until she literally rolled out of bed onto the floor. A side rail has also stopped this from happening and she can cope without the melatonin more often now.

    IF however, your mum would keep attempting to get out of bed in spite of a bed rail, they are not safe to use at all because she will try to clamber out of the bottom of the bed, or over the top of it. Either of these will be very likely to cause a further fall and possibly a much worse one because of it.

    I hope you are able to trial melatonin for your Mum. Some will have found that it doesn't work, but it causes the body to have a much more natural sleep than with other sleeping medication, has very few side effects, is commonly used for children on ADHD medication and can really make a huge difference. It did for my Mum and I wished I'd been able to try it for my Dad too. Don't be tempted to buy it online...there are variable quality preparation and the prescribed ones are more reliable.

    The other thing that can really make a positive difference, as has been suggested, is plenty of morning light and exercise throughout the day, particularly as your mum is still physically able. It probably needs to be in conjunction with the above strategies though.

    Good luck.

    ROLANDIPAM6 Registered User

    Apr 3, 2014
    #13 ROLANDIPAM6, Mar 30, 2015
    Last edited: Jun 11, 2015

    Hi, My wife has had Dementia now for two and a half years, she has now fallen down the last 3 steps of the stairs three times, it is only a matter of time when she does some real harm. We live in a terraced house which belongs to my daughter. Our daughter has not charged us any rent so I have not claimed housing benefit.
    Because of the danger my wife is in I want to rent a bungalow. What I want to know is, will I be able to claim housing benefit and if I can, who do I contact. Thank you in advance you kind people. Cyril.

  14. Hi Cyril,

    It's a tough one. There are many threads on here about is one, see:

    Kind-hearted ingenuity and a little cunning will be needed.

    Good luck.
  15. Peanut 90

    Peanut 90 Registered User

    Jan 11, 2013
    Try Potters Nodoff or night Kalms, both approved by doctors & mental health teams. Also to calm her down try lemon balm & base oil. Put a few drops of each on the palm of your hands & mix then massage her forearms with it. It takes about 20 minutes to take affect. Maybe if you did this an hour before bed plus Nodoff it will hopefully help her to sleep. Works a treat for my Mother. Lloyds pharmacy has them.
  16. welshtaffy

    welshtaffy Registered User

    Feb 12, 2015
    Couple of suggestions!

    PS: At the top!!! I did not plan to write so much!

    Hello to you, I really feel for what you are going through.My father had Alzheimers for around 8 years before he died.My mother had died leaving him alone in the house.I had one brother (who has since died) one sister.My father lived in Cardiff,Wales.Since 35 years I have lived in Germany.During the last four years of my fathers illness I flew home every 6-7 weeks and stayed for between 3-4 days just to remind him of me and of course to help.We did not wish him to go into a home, and so, at great expence kept him home, although during that time he had no idea as to where he was.We had him assessed and were given approximately 50% of the actual costs of looking after him.We had to organise our own helpers besides the ones that came from the agency mostly at weekends.He had one to one 24 hours a day help.My father could not speak,having had a stroke.Also he could no longer walk, but he seemed to understand most of what was said to him.He hated the carers,and especially when they changed him. but what other choice was there! I do believe your only option is to organise overnight carers,at least for the weekends! At the end of the day it is the family that is really suffering as your mother will probably, most of the time be unaware of her problem. My father also used to fall out of bed until we were given a proper hospital bed with side bars.That kept him in.I'm sure you should also be able to claim this sort of help i.e Bed and also water mattress which helped against bed sores.If it appears to the national health that there is much help on hand from the family, you will likely be offered far less help from them! (I do know that!) Unfortunely living in Germany was a problem for me but for my sister and to a certain extent, my brother not acceptable at all as they had to put up with so much more by actually being there.It ruined our very close relationship.We no longer have any contact with one another although I have a German wife and had to keep working,and during my fathers last year I spent 14 weeks in that year with him.I also arranged for him to be picked up and taken to a day care center to see other faces.Later he would be brought back home.Before arranging that,I spoke with his doctor and with the care home where everybody agreed it could only do him good!
    I do hope you get the help you deserve and don't be afraid to ask for it.It is your right.If your mother went into a home it would cost the National Health a great deal more that paying for a few carers!
    After my father died I wrote to everybody concerned regarding the money we ourselves had payed out during his illness and after a few months we were payed a sum which coverered approximately 30% of out outlay! Please check out your rights!
  17. gillingham

    gillingham Registered User

    Nov 4, 2014

    my wife was prescribed phenergan 10mg by the doctor for when we are going to do something stresse.i give her a tablet also when she starts to get agitatedthe work most of the time
  18. Kerry33

    Kerry33 Registered User

    Aug 10, 2014
    #18 Kerry33, Apr 1, 2015
    Last edited: Apr 1, 2015
    Hi there,

    My Mum and Dad have recently visited from Tenerife and to give my Mum a break she went to Ireland for a few days and Dad stayed with me. I am 8 months pregnant and the first night she left he was up every hour. The second night he was up everyb10 mins and was very distressed and agitated. I contacted an out of hours GP who gave me an emergency prescription for lorazepam. She advised he take half a tablet just 0.5 mg It was absolutely fantastic and he slept all night just waking once to go to the toilet. He was very relaxed and not agitated at all. Can you ask your GP to prescribe these. I hope this helps x take care x

    KINGFISHER5 Registered User

    Jun 14, 2012
    Hi I hope that I am not too late to respond to your message. Sorry to hear about your dear Mum. My Mum was very restless at night time too, getting up every hour to go to the loo. Dad took her to their G.P. and he prescribed Imipraime 10mg to start with then 25mg. It is used as an anti depressant and for relief from bed wetting in children, even though Mum isn't incontinent. Anyway, Mum now sleeps through the night from 10pm until 7pm very rarely waking at all, which is fantastic. Hope that this helps. Take care -
  20. Kate Grillet

    Kate Grillet Registered User

    May 30, 2011
    Kate G. Sleepless nights; my husband had Alzheimers for 18 years.

    Sleepless nights. My husband lived with Alzheimers for 18 years and we/I looked after him at home . We had Continuing Health Care funding for 4 of those years, which enabled me to get help. The drugs our doctor prescribed made things much worse - hallucinations, nausea, anxiety. We decided not to go down the drug route. He woke a lot at night and eventually we had a night sitter 3 times a week, who kept him company and mostly calm. He did get very tired (and so did I !). Coconut oil worked for him - made him much more mellow and sometimes lucid. Plenty in warm porridge for breakfast, and lots of walks in our nearby Botanic Gardens. Always a siesta, but not too long. Plenty of singing - gentle music at sleepless times also helped (see 'Playlist for Life' website).
    Keep on loving, no matter what. My man died 3 years ago and I still wake at 4 in the morning and wonder where he has gone. Very hard to find my way forward, still.

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