1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Sharin

    Sharin Registered User

    Aug 30, 2019
    I'm caring for my elderly mother at home. I have a care package in place which I'm hoping to review as it no longer suits & also day carers as my mother was falling.
    My main issue at the moment is my mother refusing to get out of bed.
    She started refusing to get up for the carers & progressively staying longer in bed. Mostly it's between 2 & 3pm by the time she gets up, yesterday it was 5pm - it took an hour to persuade her. She was doubly incontinent but still didn't want to get out of bed. She won't let us brush her hair, wash her properly or cut her fingernails. I do try to encourage my mother to do these things for herself but she does need help. I'm worried her skin will start to break down & she simply cannot be left in bed all day like that. Also we only have 2 - 4 hrs to get her to eat & drink before she goes back to bed.
    She's become disagreeable over almost everything, complaining a lot.
    I've rang GP who is arranging for bloods to be taken but I don't think my mother will allow it.
    My mother has always disliked having carers but it's the only was we could cope & keep her safe at home.
    Currently no dementia related medication.
    Also rang psychiatrist who diagnosed my mother for advice, waiting to hear back.
    SW involved but hasn't been any help.
    Any advice so gratefully received.
    Kind regards
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I wish I could help you Sharon. It sounds as if you have a mountain to climb.

    Your mother`s behaviour could be caused by depression, infection or even fear or acute anxiety but I think it might need a specialist to identify what is wrong.

    I understand your worry about her skin being affected by prolonged bed rest especially if she is incontinent.

    If you can possibly arrange a home visit from your mother`s doctor it might help. It would be best for her if she was seen in situ.
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @Sharin
    a challenging situation for you ... no wonder you are worried

    you say you have a review of your mum's care needs coming up ... I appreciate that you and she may hope to continue providing care in her home ... may I gently suggest, though, that maybe it's time for a move to residential care, where they will have staff on hand 24 hours a day, the necessary equipment and access to medics when needed
    and you will have a chance to rest, you sound exhausted

    sorry if this isn't helpful
  4. Sharin

    Sharin Registered User

    Aug 30, 2019
    Hi & thank you for your replies.
    My mother has been admitted to hospital & is being treated with oral antibiotics.
    She is still agitated & refusing care. Blood results showed raised infection markers & they think most likely cause is a uti.
    It's difficult to get her to take medication & she usually refuses for nurses but will take for me.
    Her condition hasn't really improved despite almost a week on oral antibiotics. She hasn't been compliant & so hasn't received therapeutic dose.
    She isn't eating at all but will take small amounts fluids.
    My dilemma is do we:
    Ask for iv fluids/antibiotics for 24hrs to see if we can shift this infection. She would need sedation for this.
    Just leave or withdraw, this would cause my mother to fade away.
    I'm thinking I need to ask for the first option as unless we try we will always wonder, what if...
    Best wishes & hoping for better days.
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    You need to step back my lovely & let the hospital do there assessments & care.
    She will be treated & cared for by the medical teams. It’s difficult I know I’ve recently been through this.

    Please for your own health step back a while - she’s in hospital. You don’t need to be the main carer for a while.
    You need time to breathe
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    Hi.My dad has carers in as he cannot walk but he does not like it.

    Dad is disagreeable with me most of the time.Kicks off about his medication and that I should do this etc.
    He will only go to the toilet every 5 days (won’t let me support him into the commode but is quite happy for me to wrench my back etc battling with a small bathroom and him and the Sara steady).So he waits for the carers to wrench theirs instead.
    Neither does he like having his hair washed or bathing (goes to a home once a month as it is disabled friendly)
    It always seems to me a form of control.But he has always been like this.Has your mum always liked being in control?
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    This is a difficult decision to make.
    When mum got to the last stages I talked to her GP about this sort of scenario. Mum found hospital very traumatic and I was also thinking about her quality of life. Someone on here had said to me that sometimes we are not preserving life, we are merely prolonging their death. The GP and I agreed that all the while mum could swallow tablets then she should be given oral antibiotics, but once her swallow had gone and she was unable to do this, then she would not be taken into hospital, but put on palliative care.
    Please talk to the doctors
  8. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019

    Personally I would opt for the latter decision, which is probably not what you wish to hear.

    Watching a loved one slowly deteriorating is not a nice thing, especially when you know that they can only get worse and end up with no quality of life whatsoever. We do not want them to die but neither do we want them to linger in discomfort and with no dignity, just a shell of their former self. I speak from experience as this is what I have to watch now and I can assure you it is far from easy!
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Thank you this helps me
  10. Sharin

    Sharin Registered User

    Aug 30, 2019
    Hi it's so tough isn't it.
    My mother used to be the most mild mannered, inoffensive person you could ever meet so this change in her personality is hard to take.
    She has always been a little reluctant with certain carers, she obviously doesn't like having them coming in but it was necessary.
    It's so difficult & I'm sending very best thoughts to you.
    I don't think my mother will live much longer & I will feel lost without her.
  11. Sharin

    Sharin Registered User

    Aug 30, 2019
    Hi, that makes a lot of sense.
    My mother's swallow if fine, she asks for & takes fluids but is refusing food. She has't eaten for almost two weeks.
    It's the agitation stopping us care for her, she keeps telling us to go away & that she doesn't want anybody there with her. The nurses wont give her blood pressure meds as my mother refuses to have her blood pressure monitored. They can't take blood or blood glucose levels. I've asked about gentle sedation just so my mother can be cared for but been told no by medics.
    I've thought maybe it's depression or is it that she no longer wants to live - it's anybody's guess really. I think she is beyond help now as the antibiotics haven't made any difference so we will just have to watch her slowly starve to death & being agitated whenever anybody goes near her.
    Not a very humane way for my mother to die & not very nice that our memories will be heartbraking & hard to live with.
    Sorry for depressing post.
  12. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hi @Sharin
    It is always a worry when they stop eating. This happened to mum three times in her last year. Each time I was told that she probably would not survive and was deemed to be at End of Life, but each time she bounced back and started eating again, although eventually, of course she didnt. Mum eventually died from her Alzheimers and I want to explain what happens, in case your mum doesnt bounce back either.

    When people die from/with dementia their bodies close down slowly, over several days or even weeks. During this time they stop eating and also stop drinking, because their bodies can no longer process the food and fluid. Many people think that they starve to death, but it is not true. It isnt the not eating that leads to their death, its the fact that they are already dying that causes them to stop eating and drinking. So please do not think that your mum is starving to death.

  13. Sharin

    Sharin Registered User

    Aug 30, 2019
    Thank you for replying xxx
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Such a difficult time sending love & hugs
    @canary as usual is spot on. All you can do is ensure that pain relief is adequate
  15. Sharin

    Sharin Registered User

    Aug 30, 2019
    We tried IV antibiotics but they haven't made any difference.
    There was an improvement yesterday & my mother drank about 650mls fluid throughout the day.
    She is very sleepy today & only managed 200ml Fortijuce.
    They have decided to sedate her with lorazepam half hour prior to washing her, just to see if it calms her enough as she is getting so agitated unless left alone.
    If it makes her too sleepy, it will be reviewed.
    They have also started process for CHC & talking about my mother being moved home or a nursing home or hospital nearer home.
    My poor mother, she has had such a lovely life. It's so sad to see her like this.
    My very best wishes to you all
  16. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I’m sorry that the decline is a sock & so quick.
    I have to say compared to my own Dads dementia path, I feel at least your Mum has dignity & you are having excellent support from the hospital & staff.

    Meanwhile I fight every step of the way to even get Dad a proper hospital bed in the home or assessments.

    Emotionally you are torn robots seeing your parent go through this experience but believe me at least you have support from clinicians at this period in time & that is important

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