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Mother not going to bed at night

Discussion in 'I care for a person with dementia' started by skaface, Jul 23, 2015.

  1. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    My mother has carers going in three times a day and they have reported their suspicions that mum doesn't go to bed at night. Mum insists that she does. I don't believe it.

    This seems to be borne out by the state of her legs - these are very swollen, as are her feet and her skin is beginning to blister where the fluid is settling there. She spends all day (and presumably all night too) sitting in her chair in the living room. I encourage her to use her footstool to elevate her legs whenever I can, but she is fairly stubborn and refuses to follow my advice over, well, anything really.

    She refuses personal care and the carers do their best but won't force the issue - when they can get at her feet they just pile more aqueous cream on and this isn't doing much good, so I wash them now, just once a week for the time being. I have Doublebase for her legs, so I will apply this when I have washed her feet and legs tomorrow.

    I'm worried that the blisters will split and she'll end up in hospital - the doctor saw her a few weeks ago and she recommended a reclining chair that mum can sleep in if she wants to - she won't use her high density cushion so at some point we'll have an issue with pressure sores too.

    How can I encourage her to sleep in bed? Where's a good place to source a recliner? My other half has found some on Amazon, but I need to ensure I can be there when it's delivered to do the explaining and set it up, so I think second hand from a mobility place might be better.
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Hi, skaface, and I'm sorry you are dealing with this issue with your mother. Of course you are concerned, and I think you are quite right not to believe what she is reporting about her sleep habits, or lack of them. The carers and your gut instinct are undoubtedly more accurate.

    I am afraid I do not have advice or suggestions for you, only sympathy, as I had the same issue with my mother while she was still living alone at home. She was not able to accurately self-report whether or not she was sleeping (this was obvious while she was hospitalized, as she would report "not sleeping a wink all night" while the staff, who checked every fifteen minutes 24/7, would have notes in the chart showing otherwise!). She seemed to be uncomfortable in her bed (not surprising, as it was a horrible lumpy old mattress) and took to sleeping on the sofa.

    I think you are on the right track with trying a recliner, although your mother may or may not use it. Don't beat yourself up, if you try, and she doesn't.

    I think I've seen some others on here discuss furniture and recliners, and hope someone will come along with suggestions for you.

    If there is anything you can do, to make the footstool and sleeping in bed, more attractive or comfortable somehow--it may not help but would not hurt. (In hindsight, I should have gotten my mother a new mattress at home much sooner, but this wasn't possible for a variety of reasons.) My mother refused to use her new footstool at first (she also has trouble with swelling in her legs), and we eventually figured out she did not like the color/pattern of the fabric on the cushion, and thus refused to use it. One day she replaced it with one of her bed pillows, and now she loves her footstool and uses it every time she sits on her sofa.

    My only other idea involves somehow making bedtime more routine, perhaps by having a carer come in at bedtime, to put her to bed, basically. Again, I realize this could come to nothing and that your mother could refuse this as she refuses other services.

    It's so frustrating that part of the dementia arc is this refusal of help and stubbornness about everything. I know perfectly well that the person with dementia is not living in the same reality as I am, but it doesn't make it any easier trying to deal with basic needs, such as food, medication, hygiene, and sleep.
     
  3. lookingglass

    lookingglass Registered User

    Nov 7, 2014
    11
    Hi Skaface
    I have the exact same problem with my mum who is extremely headstrong but unable to do anything much for herself - pretty much says no to everything including personal care from the carers. We have carers going in 4 times a day but still she won't let them help her wash/change pad/clothes - they just make food for her and tidy up a bit. It seems pretty impossible. I don't think she goes to bed most nights. If she does it may be at 3 or 4 in the morning. I don't think this is out of choice, I think she just falls dead asleep in her chair in front of the TV and doesn't wake up until the small hours. She may or may not then heave herself upstairs in the stairlift but I do not think she understands time really so it is hard to know.
    I have thought about a recliner but she would not be able to use an electric one at all as would not be able to use the control it comes with (can't see or understand the buttons). The physical recliners you pull a lever on are too tough for her to use as she does not have much strength in her hands. I don't know if your mum would be any good with these? Also, not convinced she would even think of using it as would probably forget that the chair does recline! Sorry to be negative but I can't imagine someone with Alzheimers really being able to use a recliner unless they already had one before their memory started to go. Maybe I'm wrong though and others will tell you it has worked for them. As for solving the not going to bed problem I really can't unless someone is there to suggest it every night .... Good luck
     
  4. 100 miles

    100 miles Registered User

    Apr 16, 2015
    109
    While going to bed is the best course of action....you may have more success getting her to sleep on the sofa. Could the last carer of the day move a duvet and pillow downstairs and leave it on or next to the sofa? A nice tempting nest? At least she would have her feet up at night.

    I know my mum wouldn't be able to learn to use a recliner. And if the chair was reclined in the evening, she may struggle to get out of it if she wanted to go to the loo.
     
  5. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Hi Skaface; I am assuming by your username that you are UK based (and we share the same taste in music!) I might be worth referring your Mum to specialist district nurses that practice compression layer bandaging. It sounds as if your Mum has dependent oedema and needs specialised help. The oedema sounds quite severe and a recliner might not be effective alone. For recliners, try Gumtree. They are usually very reasonable. You are within your rights to ask for a referral to a specific service. Hope this helps. D x


    Sent from my iPad using Talking Point
     
  6. Cheesecake4242

    Cheesecake4242 Registered User

    Apr 9, 2013
    43
    This is my MIL! She has swollen legs and has not been to bed for two years.

    I think that she forgets that she has a bed but it occured to me the other day that she might have great difficulty in actually getting into bed. If she sat on the edge of the bed I doubt very much if she could lift her legs up to lie down.

    Probably a waste of time getting a recliner as she wouldn't be ableto operate it.
     
  7. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Skaface,

    Sorry to hear about your mum. My dad isn't capable of sleeping in his bed anymore and has slept on the sofa downstairs for about a year now. There are lots of factors that led to this:
    • He can't climb the stairs
    • He can't dress/undress himself
    • He can't work out how to get into bed
    • He can't remember where the bedroom is
    • He gets very confused at night
    Do you know if any of these also apply to your mum? Do you see her in the evening? Could a carer go in the evening and put her to bed?

    LS
     
  8. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    Hi Skaface

    It might be worth contacting your local Red Cross to see if they do short-term loans of recliners. That way you could see if your Mum uses it before committing to purchasing one.
     
  9. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    Thank you! What a brilliant idea and I'd NEVER have thought of it!

    Thanks everyone for your comments - I guessed I wouldn't be the only one in this position.

    Mum very rarely changes her clothes, and I think this is the source of the bad smell in her house (in addition to the poo stained carpet and her feet, which STINK) - when I can, I encourage her into clean clothes, as do the carers. When she has her little accidents (poo on the carpet) the carers make her change clothes and if they can they get her into the shower.

    I don't know if she can remember where the bedroom is (I doubt it because when I last stayed over at hers I had to lead her to her bedroom and put her to bed after she kept trying to sleep in her chair in the living room), but I do think she has trouble getting in and out of bed. I think I will start putting her duvet and pillow in the living room so she can kip down in there if she prefers - I'll have to do this by winter anyway because she just turns the heating off in the evening and doesn't turn it on again and she'll get cold in the living room without a duvet - however the carers have been told how to turn the heating on so they can turn it on when they get there in the morning.
     
  10. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Skaface,

    That makes much more sense now. Sounds like for many reasons your mum just isn't going to be able to get herself upstairs and into bed. One option would be to have her bed brought downstairs. Would that be possible?

    LS
     
  11. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    Thanks LS but she lives in a bungalow anyway so no stairs to cope with. We had an argument the other week where I was saying I would take her to see her sister but we'd have to take her out somewhere as mum wouldn't manage the steps at her sister's home.
    Mum's argument was "I manage the steps here" and refused to believe me when I said she lives in a bungalow.

    Her sister at nearly 89 has all her marbles, she's been so lucky. As has my cousin, he'd be brilliant with her if she had been affected, his wife less so.
     
  12. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    Thanks for the replies everyone - there has been some movement.

    The ICT is sourcing a proper recliner for her and in the meantime her seat will be raised so she can get out of it easier.

    The physiotherapist tried her with a wheeled walker this week and the improvement in her gait and speed of walking was amazing! She was fairly zipping along, and not having to reach out which terrifies me as she WILL fall doing that. He's arranging for one to be delivered next week, and he's also arranging for a physio to come and do some exercises with her which the carers can then do with her. Hopefully all this will improve her circulation, the trouble with the oedema is that it will put unnecessary strain on her heart and kidneys. And, of course, her skin will split. She refuses to keep her legs elevated and she also likes to wear tight socks, which doesn't help the circulation.

    Also the ICT reported back to her Care Manager/Social Worker, who came to visit last week. She was spectacularly unimpressed with the care providers and will be having words (they aren't coming at the times they are supposed to, some of this is down to mum because she's not up at 9 am when they call, but they are also carrying out their last visit at around 4 pm which is FAR too early, and sometimes she's given her lunch before 12 pm which is also far too early for her), and is also seeing if they can provide a fourth visit a little later on for someone to put her to bed at around 7 pm.

    However this was couched in these terms: "you have two choices. Either I can see if I can get her a fourth visit, or you can arrange for residential care for her".

    She's coming back next Wednesday to carry out a proper Capacity Assessment to work out what care she needs and then tender it out to various care homes. I hate to do it, but she will be safe and I can stop worrying myself stupid.
     
  13. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    This was one of the reasons we cancelled dad's carers. They were sometimes coming round 3 or 4 hours too late to get him up, washed and dressed, so mum would end up doing it herself before they came.

    I'm glad to hear that you have some nice, positive news there with the wheelie-walker. At least your mum is moving about it bit more now.

    Best of luck!

    LS
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,373
    Female
    South coast
    Im sorry to pick up on a small thing when you have so many problems, but mum has oedema and also forgets to elevate her legs and wears tight socks. I swapped all her socks for ones like these, which has helped
    http://www.cosyfeet.com/socks/extra...mens-cotton-rich-patterned-socks#.VcbvgrVTOk0
     
  15. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    #15 skaface, Aug 9, 2015
    Last edited: Aug 9, 2015

    Oooh, lovely, thank you! I'll get her some of those!

    I'll see if I can get her some tomorrow, I can get to Maidstone (where there's a stockist) on my way home from my other half's, if they haven't got them I can order them in.

    I'll also see if I can get her some shoes from there as well - her feet are so swollen she can't get them into her usual (highly unsuitable) footwear. I took her out in late April/early May and I had to take her out in her slippers (all worn and holey) and buy her a pair of velcro fastening sandals in a size bigger than she should need, though she actually now needs a size two sizes bigger than her normal size. I can see they do a loafer style, which she likes. Thankfully without a heel which she won't like, but she can't wear her heeled ones any longer (even I haven't worn heels for years).
     
  16. canary

    canary Registered User

    Feb 25, 2014
    9,373
    Female
    South coast
    Ive just bought some shoes from there - I bought the "stretch to fit" ones. I was very impressed with them, they look like ordinary shoes, but they have stretch uppers.
    You can buy them tax free if she has oedema.
     

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