Anyone else had this?

Discussion in 'End of life care' started by tweetypie, Apr 28, 2015.

  1. tweetypie

    tweetypie Registered User

    Mar 16, 2012
    My mum is in a care home, where she's been for over 5 years.

    I'm not sure exactly how long she's had Alzheimer's for but it could be between 15 to 17 years. I first noticed her getting forgetful and it crossed my mind she could have it and over the years it became obvious.

    She has been unable to walk for many years and first was sitting in a chair in the home but when she started to slip down and fall onto the floor they put her into bed all of the time.

    At first when she was in bed she was still responding to conversation and singing for the first year but then started to stop talking and then singing and then wouldn't even open her eyes.

    I kept visiting for a few months but I found it so upsetting that I decided to take the step of stopping visiting. I thought I'd be getting a phone call to say she was near the end within a few months and would be told to visit her for final visit if I wanted but it's been 2 and a half years and she's still the same.

    She's skin and bone and to me, this is just so awful.

    I just hate the thought of her going on so long like this. I don't know if she's suffering, I just get the usual answers from the care home staff that she's fine and they're doing all they can for her.

    Has anyone else had the same situation or similar? Is this normal - whatever normal is with this horrible illness?
  2. WIFE

    WIFE Registered User

    May 23, 2014
    First thing I was told by the Nursing Home where my husband finished his journey with dementia was "everything with dementia is normal to that person". Who can say truthfully what is normal for an individual patient. Sad that you found you could not continue to visit your Mother - even though her eyes were closed and she was not responding she would hear your voice and feel your touch. It is such a distressing illness but non-one can reliably predict how long it will last - everyone's grasp on life is different. You will be in my thoughts as will your Mother. WIFE
  3. Perdita

    Perdita Registered User

    Jun 22, 2009
    Suffolk, Uk
    My mum hasn't quite got to that stage but she is now going into the stage where she's in bed nearly all the time. We got her up a little while at the weekend but she was very uncomfortable.

    Today she has slept all day in bed and been unresponsive most of the time, she's only had about 4 sips of fluid.

    I'm sorry that you and your mum have had to go through all this for so long :(
  4. flower1

    flower1 Registered User

    Apr 12, 2013
    I do understand what you are going through. My Mum has also been in a nursing home for five years and we have had a lot of ups and downs with this cruel illness. She is now in the severe/last stage vascular dementia. (but not end of life as yet). I was told that every person is very different and will take their own individual journey, my Mum is certainly taking hers. I wish you all the best for the future.
  5. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Until the day before my Mum died, she was lying in her bedkicking off her bedcovers and waving her legs in the air.....her version of singing I suppose.:rolleyes:....her legs were thinner than my arms by and yes it happens to many of us. She, your Mum I mean, will pass in her own sweet time and the sense of relief will be there for you on her behalf, running along with the sadness of losing your Mum.
    Thinking of you both.x.
  6. tweetypie

    tweetypie Registered User

    Mar 16, 2012
    Thank you all for your replies.

    I just got a phone call yesterday from the home to say mum had been poorly recently, chest infection and they'd called a medic who said to call the on-call doctor who came and prescribed antibiotics and she's getting better now.

    I wonder why they did this, surely kinder to let her slip away.

    Just seems to prolong her suffering.
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    #7 Spamar, May 6, 2015
    Last edited: May 31, 2015
    Have you got LPA health? Or DNR form from gp? If so, you should be able to decide what happens to mother. I have just been through this, OH had an infection and I was asked if I wanted him to have antibiotics. At this stage, I did, but if it had been, say, pneumonia, I might have decided differently
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    The might privately agree that it would be kinder, but in practice will be afraid of being accused of neglect and failing in duty of care, and/or being sued for not doing whatever it takes. You need to have a talk with the care home - have they never asked you for a 'what if?' discussion? Some relatives do want everything possible done, no matter how pitiful a state the person is in, and the staff won't know how you feel unless you tell them.

    When my aunt was in a bad way with repeated infections which it took an age to recover from each time, we were asked whether we wanted any more interventions (no, since it would have meant hospital and increased distress for her) and my mother's CH have discussed used the 'treatment or not' question with us. My mother is nearly 97 with advanced AD so we cannot think any life-prolonging treatment, unless for e.g. another broken hip, God forbid, would be at all kind.
  9. tweetypie

    tweetypie Registered User

    Mar 16, 2012
    Mum drew up an EPA - so I look after her health - but I'm finding no one will listen to what I say.

    I have discussed mum's situation and what she used to prefer, to ask that be done - she never ever used to take antibiotics and was very against them, but the home refuses to listen to me and says it is their practice to "make people comfortable and not to suffer" so they insist on getting her better rather than letting her go.

    I have discussed with the CH's GP too and he is the same!

    I guess I'm not going to be able to change their set ways and will just have to let this go.
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    You need LPA for health and wellbeing, the old EPA only covers for finance. But if you are next of kin, or whatever it's called nowadays, I can't see why they aren't listening to you at least.
  11. WIFE

    WIFE Registered User

    May 23, 2014
    Just a thought - but are you discussing your Mother's potential treatment of infections with antibiotics with the Care Home over the telephone? Have you resumed visiting your Mother because I expect you would get a better hearing from the staff face to face. Hope your Mother does not suffer too much. WIFE
  12. tweetypie

    tweetypie Registered User

    Mar 16, 2012
    I am usually telephoned by the care home after she's been ill and they have called the GP who has given her antibiotics.

    I have never been asked by this care home for any information or wishes, I have advised them of what mum would have preferred when she was "with it" and told them what her beliefs were, such as not ever taking anti biotics but they are just doing it their way - they totally ignore what I say. They always have. Such as mum always wore pyjamas and they put mum in a nightie - I said mum did not ever wear them and hated them and complained that mum was very cold. They still kept her in nighties!

    It's one of the reasons I've stopped visiting because I am not listened to. I don't like the care home but I have no chance of changing her to another - social services have told me so!

    I cannot take the strain of worrying any longer and just have to put it out of my mind or I'll go mad with worry over it all.

    I just wish mum would pass away peacefully so the whole sorry saga would come to an end.

    Sorry to be negative but this has been going on for years and has caused me complete despair and a breakdown.
  13. janetlynn

    janetlynn Registered User

    Jul 22, 2012
    Hi Tweetypie,

    I feel your pain love. Do you have family and friends to support you? I hope so.
    Please keep posting. You are not alone.

  14. ma120990

    ma120990 Registered User

    Jun 1, 2015
    Medics not listening

    Ohh I feel your pain. Our dad was bumbling OK for a few years then this year his weight started to plummet. The GP's were useless and seemed to be on a different planet. Dad was extremely emotionally disturbed but the GP's were not prepared to do anything. I appreciate they have a limited set of drugs to play with but night after night we took turns to sit with him (he couldn't sleep) whilst he was sat up saying he could no longer handle it, the memories gone, why can't someone help me, Please someone help. It was b****y awful, totally awful and no one seemed prepared to listen. It was only when we found a hard mass on his belly that he was taken into hospital where following a CT scan they diagnosed cancer and the floodgates of support opened (if felt that way to us). We feel totally sure it he hadn't had a cancer diagnosis he would have been back home still suffering mental torture.

    I work in the NHS and was totally appalled at the lack of support for dementia patients. It was that bad that I was ashamed to admit being an NHS employee. Thankfully for my dad the suffering came to a swift end. Our LPA for health and financial matters were of great assistance. This was probably the most useful thing dad wanted us to do as it meant we were listened to (at least by the hospital)! GP's weren't interested in Palliative care plans or DNR and quite frankly were still asking if he could make an appointment to see them even though we had told them he was bed ridden. The mental health nurse was fab though. We kept a diary of his mental torture and she really did try her best to get him into hospital so his meds could be modified. Alas the locum GP who was called by her blocked this citing that the hospital had a sickness bug so he should stay at home. There was no sickness bug at the hospital (remember I work in the NHS and was able to check this). Dad was however admitted 3 days after. His care in the hospital was exemplary and I have nothing but praise for them.

    Getting support and recognition from GP practices and some care institutions is awful. we had to fight the system tooth and nail all the way up to the point of his cancer diagnosis. Dad was in a bad place and horrible though it is to admit, we have to say we owe a debt of gratitude to cancer. It saved him from further dementia torture and indifference from the general medical profession.
  15. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    God help us

    What a heartbreaking post.
    And what does it say about the pecking order of diseases in 2015?
    Ma120990 you did your best, and I'm glad your father is now at peace.

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