Help - we are getting continous broken nights

Discussion in 'I care for a person with dementia' started by BizzyLizzy, Apr 21, 2015.

  1. BizzyLizzy

    BizzyLizzy Registered User

    Apr 13, 2015
    Hitchin, Hertfordshire
    Dad has Lewy Bodies dementia so everything is constantly changing for us. Over the past few weeks he has been getting day and night mixed up. He has sometimes been getting up four or six times a night thinking that it is morning and not believing you when you tell him it's the middle if the night - even if you draw the curtains and show him that it's still pitch black outside. Sometimes he gets angry and refuses to go back to bed. We can't leave him alone because he has Parkinson's disease and his mobility is severely affected and he is liable to fall over and injure himself. During the day he then tries to sleep and we are constantly trying to think of ways to keep him awake! His GP has been very unhelpful and has told us there is nothing she can do to help and that we will have to contact the dementia nurse directly to seek advice. We have tried to do this - but she is always either out of the office or in a meeting. Our details are recorded and we are told we will get a call back - but we never do and have to go through it all again and again day after day. Has anyone else had experience of this type of behaviour? Is their medication that can be prescribed to help with this? Someone told me that we should be giving him Melotonin - the GP refused to prescribe this and you're not able to buy it over the counter in this country - so no joy there. Two of us are sharing the load (my sister and myself) with this - but we are both getting very tired and need something to help us through this phase. Any suggestions will be gratefully appreciated. Thank you.
  2. rea123

    rea123 Registered User

    Mar 30, 2015
    my oh was diagnosed a few weeks ago...but with frontotemporal dementia,.. but his sleep pattern was and has been very similar to what your experiencing.. ive watched countless videos and cd films only to be watched an hour later cos he had forgotten we had watched it before...and then for him to sleep through out the day... fortunately our doctor (welll since the diagnosis, not before) and the mental health nurse have been brilliant... and altho not ideal did prescribe relaxants and diazapan which have had an amazing effect on him ....i know this medicine isnt ideal for everyone but please dont give in, make an appointment at the doctors and insist that there is something they can do to help...and having dementia isnt an excuse for them to do nothing... if that was the case we would all become gps... heres wishing you both the courage to fight on
  3. marionq

    marionq Registered User

    Apr 24, 2013
    Your GP sounds like someone who has little or no training in dementia. There are drugs which the memory clinic can prescribe that the GP has less knowledge of and needs to be directed to by the clinic. There is no excuse whatsoever for the nurse or consultant not to get back to you and I would be sending an official letter of complaint about this.

    When I had this problem with my husband our GP prescribed Zopiclone sleeping tablets and arranged an earlier appointment with the clinic which added Trazodone to this. It is now unusual for my husband to waken during the night unless his skin is troubling him.
  4. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    Mum wakes during the night and shouts which disturbs my 18 yr old son. The council lent us a monitor ( like u have for babies) so we hear her moving abt etc b4 she disturbs the whole house! The mental health nurse also told us to give her a anti histomine tablet like piriton cos they make her drowsy, this seems to b working quite well, give it a try? X
  5. marionq

    marionq Registered User

    Apr 24, 2013
    My husband takes an anti histamine every night for his skin itch. It is not enough to stop the itch and certainly not enough to make him sleep. Try it by all means but I wouldn't expect too much from it.
  6. BizzyLizzy

    BizzyLizzy Registered User

    Apr 13, 2015
    Hitchin, Hertfordshire
    Thanks for all your suggestions and support. The area where mum and dad live seem to have a very poor NHS trust. We've had nothing but trouble with all sorts of different medical problems over the past 18 months and are gradually getting angrier and angrier as time goes on. We will be complaining at some point (we have kept a diary of everything) but so far haven't been able to muster the time or strength to do it - but we will get there eventually. Will try him on anti-histamines until we can get an appointment for a review and will suggest trying a combination of the other drugs suggested to see what sort of reaction we get. Thanks again. :)
  7. pamann

    pamann Registered User

    Oct 28, 2013
    Hello bizzy lizzy you need sleeping pills insist that you get them, unless for some reason he is unable to take them due to other medication he is taking, see your Dr.
  8. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    Have you got a family support worker or a social care/social worker? if not you can ring adult social care and make a self referral. Maybe having someone like that might help you get things sorted, it would be their job to chase up appointments and act on your parents behalf's they can arrange the correct sort of assessments and so on
  9. BizzyLizzy

    BizzyLizzy Registered User

    Apr 13, 2015
    Hitchin, Hertfordshire
    Thanks for the suggestion Katie - but we have already been down the social worker route and gave up on it as it was getting us nowhere. We are still trying to contact the dementia nurse (no joy today either). We have found that perseverance is the only thing that gets results. It's almost as though everyone is trying to make things difficult for us as a way of making us give up so that they don't have to spend any more time on us! I think that they think that mum and dad are getting good quality care from the two of us, so that relinquishes them of the responsibility of having to care for them. However, a friend on mine, who's dad has recently been diagnosed with vascular dementia is getting a really good service from his GP, Consultant and Social Worker - he lives in the catchment area for UCL in London. There is definitely a post code lottery happening in our case.
  10. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    There will be an emergency out of hours adult social care team number if things get to crisis point. However I think you should keep calling adult social care, or go round to their office and demand to see whoever is on charge and say that you have rung X number of times and wish to report that you are dis satisfied with their service. Sometimes its those that shout loudest that get shouldn't be like that but unfortunately it is.You say your calls and details are recorded, so let them know this when you go to see them and ask them to 'find' you on their system and that you are prepared to wait whilst they do so!
    Contact Age UK they can be very helpful, ask if their local agent can call and talk through the difficulties and give any advice.
    The GP could do more!
    Has your Dad seen a consultant/specialist that made the diagnosis? Like the Mental Health Team/Department? they may be able to advise on more effective medications. It might be a good idea to ask for an urgent appointment to see them for a medication review.
    We went through a very similar story with my Dad ....getting up several times a night, getting dressed, putting clothes on over his pyjamas, insisting it was time for breakfast, trying to unlock doors in the pitch dark, not noticing or caring that it was 2 a.m......yes we too were exhausted, so I empathise.
    Be careful with self administering any drugs.....medications are designed to act on a normal brain not one that is deteriorating therefore a GP or Consultants guidance is required for safety reasons and regular medication reviews are necessary. However, some of these behaviours are traits of the condition and medications are not effective in some cases!
    Would it help if your Dad was able to attend a day centre? he might be more mentally stimulated be cared for, give you a much needed break (or a sleep!) he could have lunch, socialise with others, stay all day or part of a day and some day centres even have a mini bus and can collect and return clients to their home. Not sure if it would help him sleep but its worth a try.
    Could he have a carer a couple of sessions a week? (this is where a social worker could/should help!) however if he is receiving Attendance Allowance or any other benefits it could cover the cost of this from a good private company if social services are being slow to help! A carer could mean that you and your sister could take turns with the carer?
    Good Luck
  11. BizzyLizzy

    BizzyLizzy Registered User

    Apr 13, 2015
    Hitchin, Hertfordshire
    Thanks Katie. We haven't tried Age UK yet - so will give that a go. He has been diagnosed with Lewy Bodies and the consultant told us to contact the dementia nurse in the first instance if there was any change to his condition - and that's what we have been trying to do! The nurse is never there - so we leave messages and she doesn't get back to us. Dad also has prostate cancer and we've been through exactly the same treatment from the cancer nurse. When we finally managed to speak to her, she treated us as if we were an inconvenience. The GP is the second one we've had at that practice - the first one was just completely useless - this one is either obstructive or indifferent. We have made a diary of the way we have been treated and will make complaints, with dates, times and names to the various deparments. We will also be copying in our MP. At the moment it's enough just to keep everything going. We do have a wonderful carer who comes in for a couple of hours six days a week and does the hard work of getting them up, showered,dressed, medicated and breakfasted. She does do extra hours if things get really tough - but not overnight. Hopefully when we finally get an appointment with the dementia nurse, we will get the medication we need.
  12. desperado

    desperado Registered User

    Apr 7, 2008
    Lancashire England
    Broken Nights

    Hi Bizzy Lizzy
    I have also recently been through this with Mum. I have resorted to herbal remedies which seem to work well. I have tried kalms and they worked (3 at around 6.30pm and she settles for the night. However, as she doesn't like taking pills and these can't be be crushed I have now bough the liquid (Rescue night) and they say three drops on the tongue but I am putting it in her drink. She really calms down and has a good sleep and hasn't woken up during the night since I started giving this to her (1 week ago)
  13. Senga

    Senga Registered User

    Oct 1, 2013
    Is it possible to do some research and perhaps move to a more caring surgery?

    This is hard enough without being treated as a 'nuisance' by the professionals who are supposed to be there for you.

  14. Valerie-Anne

    Valerie-Anne Registered User

    Oct 13, 2014
    lewy bodies and sleeping tablets

    Hi I think there is a great deal of confusion out there about sleeping tablets.
    My dad also has Lewy bodies dementia - a difficult dementia to diagnose. He is up every night sometimes up to eight times a night but the doctor and consultant both strenuously insist sleeping tablets will make him worse and therefore refuse to prescribe. My mum is now exhausted and suffering herself - while my dad sleeps in the chair during the day.
    Social workers, cpn nurses all suggest carers but that is difficult for my mum to have someone in her home 24 hrs.
    Meanwhile his behaviour and demeanour is altering almost daily
    At a lose really as homes are so so expensive yet we do need to protect my mum now.
    Like the above - any advice gratefully accepted
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    I have heard a number of people say that sleeping tablets have helped to get the routine of day and night back into the person's life. One of the reasons GPs don't like prescribing is because they worry that someone who is confused may wake up in the middle of the night drowsy from the tablets and have a fall. If you are there then you might be able to persuade them to prescribe in the short term just to see how it goes. Good luck xxx
  16. kaycee30

    kaycee30 Registered User

    Feb 4, 2015
    Hi, my Dad had LBD and too has night disturbances, we have tried everything to reduce it, but have been told its a well known behaviour of LBD.
    Day centre/ activities have been a great help, in that he is mentally stimulated gets chance to socialise (well kind of as his speech is slurred, and forgets words for basic sentences. )
    day centre also gives Mum a rest.
    A dim nightlight might help.
    a clock with day/night displays might help?
    I hope the Attendance allowance ibenefit s being claimed at the higher rate, with council tax disregard from the local authority.
  17. paulinem

    paulinem Registered User

    Jun 12, 2012
    Wakeful nights

    My mother has Parkinson's with Parkinson's related dementia. She also went through a phase when she would be constantly awake during the night, mainly wanting to go to the toilet, but often thinking it was time to get up at 4.00 am. Her GP was reluctant to prescribe sleeping tablets as they felt there would be a huge risk of her falling in the night if she tried to get up especially as Parkinson's symptoms can make walking hazardous. Her carers constantly tried to keep her awake during the day, but that was almost impossible.

    She is now in a care home, together with my father, and I often ask the night staff how she sleeps and they tell me she sleeps well but just wakes very early. Obviously, when you have someone who is working nights then it is not a big issue for them to deal with night time issues. They also put her to bed in the afternoon so, again do not have any concerns about her daytime sleeps.

    It is an extremely difficult time for you to have to cope with constant broken nights and although I never wanted my mother in a care home, I could not have looked after her 24 hours a day.
  18. barryg

    barryg Registered User

    Oct 6, 2014
    #18 barryg, Apr 28, 2015
    Last edited: Apr 28, 2015
    My mother has Alzheimers. She went through a similar phase. She would get up in the middle of the night and move furniture around. Once she insisted on going to a neighbour's house at 4am. Fortunately the neighbour didn't answer the door. After a few weeks she got over it. But like you, mostly I tried to get her to act normally, correctly. It was hard work, distressing for both of us, and wasn't successful.

    In hindsight I would have been more relaxed about it. I recommend that one or both of you adapt to your Dad's schedule and 'go with the flow'. View his behaviour as an adventure, and go with him on the journey. Being flexible, patient and unconventional will make life easier for you both, and will give you good memories of your father which you will cherish when he is gone. If he sleeps during the day, let him. But when he is awake ensure he gets plenty of exercise. Don't try to correct him ('reorientation therapy'), you will never succeed. Instead, allow him to be the expert. If he does the wrong thing, don't point out his mistakes, and don't let him see you change what he has done. Instead be positive and appreciative : "I would never have thought of doing it that way. That is much more interesting than the way I do it." The book 'Contented Dementia' by Oliver James is very good on this.

    My mother has now been forced into hospital by social services and the NHS who will not allow me to continue caring for her. But if I could I would care for her for the rest of her life. Despite (or perhaps) because of her condition we are closer than ever, and spending time with her is more precious and rewarding than anything else I have done with my life.
  19. JackyJ

    JackyJ Registered User

    Mar 19, 2013
    Fancy a coffee

    Hi I started reading your post and thought snap, then read where you live and snap, let's meet up for a coffee and a chat.

    My Dad has Parkinson's and now DLB, he lives near me, in a CH, and wakes all night. It's the depression I find hard to cope with. Plus mum has advanced Vasicular Dementia and recently moved to a Nursing Home in Hitchin.

    If you would like to meet up let me know, even just to let off steam x
  20. julesbol

    julesbol Registered User

    Apr 8, 2013
    We experienced the same issues with night waking and wandering, and aggression plus day sleeping and an absolutely useless response from the Dementia Team...we kept a diary for nearly 2 years and even met "team members" who could offer no practical help...finally after a fall our Dad was hospitalised and sadly passed away recently...after being shunted around different hospitals...Our suggestion would be "get stroppy NOW"...log everything re your Dad, and any contact you have, including unanswered phone calls, poor or no advise, and send it to the GP, Dementia Team and Social Services...your Dad has a legal right to be properly as a "person of interest" can do that for him. If you get no response or someone tries to fob you off threaten to go higher...this is happening far too often and all of us who have experienced similar situations really do need to speak out about it.

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