1. poll1

    poll1 Registered User

    Jun 15, 2009
    My mum, who has combined vascular dementia/alzheimers, is 88 and has been cared for by my 92-year old dad for a number of years.

    Dad has reached the end of the road and can no longer cope.

    This will not be a new story to many of you, I'm sure - but Mum is in complete denial that there's anything the matter with her.

    She was admitted to hospital three weeks ago and we took the decision to use the break in routine to bring about a move into a care home. Unfortunately, our home of choice has been closed temporarily due to an outbreak of Norovirus, but will open again next week. In the meantime, Mum is in a temporary assessment bed, champing at the bit to get home and kicking up merry hell.

    The line is 'You've been poorly and though you're not ill enough to stay in hospital, you're not well enough to go home yet.' My feeling is that she will be dreadfully upset and furious if told the truth - that she isn't going home because Dad can no longer manage - which she will forget, in any case - but I don't know how long we can dissemble about what is happening. Sadly, I don't live close enough to them to be of much practical use in helping to bring about the only thing she wants, which is to go home.

    Please, somebody, give me some hope.
  2. Butter

    Butter Registered User

    Jan 19, 2012
    She can go into the care home to continue her convalescence. 'To build up her strength', as I have read it described here several times.

    The carehome may not be permanent. There need be no lies in that - for we never know what the future holds.

    But I am sorry for all of you.
  3. treecol

    treecol Registered User

    Mar 22, 2013
    I feel for you. My Dad is in hospital in similar circumstances to your Mum - not too ill to come home, but needing to be assessed as he won't allow me to care for him, he lives with hubby & me.
    I know how you feel as he's going mad wanting to come home & is being so far verbally aggressive with nursing staff. I don't know how to offer you hope just to say keep coming to the forum for help, support & to know you are not alone. Don't be hard on yourself about not living near. It's a horrible disease which affects not just the carers but the whole family involved. It's just awful. Have a hug & I'm sure others will reply to give you practical advise too. It is hard to know what to tell our loved ones as they don't really understand & forget so quickly, I don't think you can tell her any more than you have really. Hopefully the staff will keep reminding her why she's there.
  4. Janeannetiddles

    Janeannetiddles Registered User

    Apr 13, 2013
    Tyne & Wear
    My grandma was the same complete denial at beginning and even sometimes she would mention "why have I gone like this" " why I am in this place" (Hospital) I used to tell her that it wasnt her fault and that she had a disease that would affect her memory, and she used to be okay with it, I used to reassure her we would always be here for her and no matter what I would keep reminding her of forgotten memories, but we have had moments as it went on over the years, she had angry moments, sad moments, happy moments, but always try and sway them to happy times, try and focus on something they can remember at the time. You will get there and there is hope that you still have your mam although she may never be the same again that person is still somewhere lost inside, you just have to memories to get it back if only for a brief moment.
  5. FifiMo

    FifiMo Registered User

    Feb 10, 2010
    In my experience, I would ask the doctor or nurse on the ward to tell her that she needs to get her strength back before she can go home and that a rehabilitation place has been found for her where they can help her do this. By doing that, both you and dad are off the hook for this happening and can always blame the doctor for her being there. If she hears the news from either you or your dad then the dynamic is different and it is amazing how, even though her memory is affected in other areas, she will remember such a thing forever in a day!!!

    Hope this helps,

  6. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    Middle England
    Does your mum have an OT/SW assigned to her in the hospital? I think that she/he would be the person best suited to talk to your mum about her rehabilitation.
    In my experience hospital doctors and nurses come and go (and have their own agenda's when it comes to beds and patients filling them) and are not necessarily totally reliable messangers of news a patient doesn't wish to hear.
  7. poll1

    poll1 Registered User

    Jun 15, 2009
    You're all very kind to take the time to reply. Thank you. And there is encouragement of sorts in knowing that the approach we've adopted is largely the approach the majority of you would, too. Unfortunately, Mum is dismissive of 'medical advice' and thinks she's perfectly well enough to go home and carry on running the house & looking after my dad just as she's done her whole life (although she hasn't managed in any meaningful way for years and he's the one who looks after her). So the going-home conversation just goes round in circles.

    Rationally, I know that we just have to tough it out, but it's heartbreaking to see her so upset and unhappy.

    Thanks again, everyone. Sucks, doesn't it?
  8. treecol

    treecol Registered User

    Mar 22, 2013
  9. at wits end

    at wits end Registered User

    Nov 9, 2012
    East Anglia
    It sucks but it can get better, It is five months since i took the convalescent route with my gran after a hospital stay. She now gets it in that when she asks when she can go home I remind her the dr said she wasnt well enough to live alone anymore. She normally responds with an expletive but lets it drop after that. Then she asks is she could go into a CH then?

    She is as contented as she can be, in fact she is far happier there than she was at home, though she would never admit it, but the smiles and laughs we share now are far more than when I was struggling to keep her at home.

    STick with it, the first few months are hard but then it improves, honest!
  10. poll1

    poll1 Registered User

    Jun 15, 2009
    Still in limbo, between temporary assessment bed and permanent care home place.

    I took Saturday off & didn't visit, and on Sunday Mum seemed much calmer, almost (not quite, but almost) accepting of the situation.

    Last night it was business as usual. She was again upset, angry and agitated, insisting on going home, threatening to divorce my dad (who phoned when I was there) for 'dumping' her in a home. Nothing he or I could say soothed her, and of course its practically impossible to train elderly husbands not to argue back.

    Her catchphrase is 'nonsense.' Convalescence, medical advice, the fact my dad's been ill, it's all 'nonsense'. There's nothing wrong with her and she's being kept a prisoner against her will - and the last bit is kind of true, although it's a 'best interests' decision.

    The only weird blessing in all of this is that my dad did get ill, with norovirus and subsequently an irritated bowel, and so has been spared some of the emotional upheaval because he simply can't visit her.

    I am hoping she'll be moved this week, but I'm now worried that she may be so uncooperative during the pre-admission assessment to the new home that they may refuse to take her. I know they have residential & nursing beds available, but no dementia beds.

    And there is still the issue of what to tell her. She won't accept the brutal truth any more than the gentler lie.

    Last night she said 'You're the only one I can trust.'

    Knife. Heart. Twist.

    Very sad.
  11. Jessbow

    Jessbow Registered User

    Yes, for all the things they can do, this is one skill they never seem to loose.

    Hang on in there. You know which of you has the ability to thinks in a rational way. Hang on in there, or You know whats best. Think of it as role reversal - when you were small I guess there were many things you thought unjust- ...but they fade and you do realise Mum was right. Sadly not many of our oldies growback into understanding - as we did and can see that
  12. poll1

    poll1 Registered User

    Jun 15, 2009
    Thanks, Jessbow. You're right. She isn't a capable adult any more.

    Her distress is terrible to witness, though. Her blood pressure is through the roof and honestly, I think the stress of moving to residential care may kill her. And the stress of caring for her at home will almost certainly kill my dad.

    I'm having to choose between my parents.

    No wonder I feel so dreadful.
  13. poll1

    poll1 Registered User

    Jun 15, 2009
    Another week gone by and we're still waiting.

    Apparently someone from our care home of choice came to assess Mum on Friday afternoon, but no news as yet. She knew my cousin had been to see her but didn't mention any other visits when I went yesterday; she'd not taken it in, I suppose.

    I'm really frightened that although the temporary home and social worker agree that she requires residential care, she's in such a state of rage and denial that there's anything the matter with her that the new place may consider an EMI bed more appropriate. They have no EMI vacancies at the minute. The clock is ticking on the temporary bed and I don't have a plan B.

    She was extremely angry yesterday. I'm afraid I lost my temper myself, like an idiot. I feel very ashamed of that, although at least the worst of the anger had passed when my dad rang and they were able to have an almost normal conversation (He's still unwell and hasn't been able to visit; she's been telling him she hopes he has cancer because that's what he deserves for keeping her away from her own home.)

    She was quite settled and accepting when I left. But it'll be back to square one today.

    On we go. Nothing else for it.
  14. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    Poor you and your poor Dad. To care for her that long and then get told she hopes he has cancer must be devastating for him.

    I hope that she settles soon. My only worry is that they may ask you to move her as she progresses into her illness if they don't have dementia beds.
  15. poll1

    poll1 Registered User

    Jun 15, 2009
    ANOTHER week of delays and frustration gone by, but fingers crossed all the ducks are in a row for a transfer to the new home on Tuesday.

    We will present her with the closed choice of transferring or remaining where she is, but I'm really, really worried that despite the presence of the social worker and all the white lies and tact in the world she will simply, point-blank refuse to move.

    What happens then?

    In the meantime, it seems that my poor dad's heart is enlarged and has begun to fail and we spent Friday in A&E with him. He's home again now, but it's another layer of worry.

    My mother does not see why this should in any way be a barrier to her going home.

    Very difficult to think about anything else at all at the moment.
  16. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Hi Poll1

    Hope it works on Tuesday. I bet it will. Your mum sounds like one fiesty lady, but she DID say that she trusted you, so hang in on that. Of course, that trust might not continue, but talk about that to us later.

    Your mum isn't thinking logically - does she even know what an enlarged heart means? Well, nor do I, but it don't sound good for looking after a demented wife.

    Stay strong. You know that what you are doing is right. You will no doubt get some aggro about it, just tell her the doctors have insisted that she be in the care home "for a little while". Then see to your dad.

    My mum never settled in the home. Not really. She wanted to go home for a year or more. When it sunk in that it had been sold, she wanted to rent a flat with another resident. I said I would look for some that might suit them. Oh dear, there weren't any. But she trusted me, so the white lie worked there.

    STay in there love, you will get there. It ain't easy, but it's right.


  17. poll1

    poll1 Registered User

    Jun 15, 2009
    Haha, Margaret, I think the trust is long gone - she's spotted my name in her file in the home (as next-of-kin) and decided that it's me who put her in there. Which it sort of is, so that's fair enough. Yesterday she was muttering about leaving all her money to a member of the care home staff :)

    I so badly want tomorrow to be over. I know it'll just be the beginning of the next stage, but at least the logistics will be settled for a little while, even if Mum isn't.

    Talk about wishing your life away.
  18. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    One of the 'advantages' of dementia (can there be such a thing?) is that if their short-term memory is already very bad, you can often recycle the same fib (or the same two or three) over and over, since they forget whatever you say in a few minutes anyway.
    So once you've found one or two that work for your particular circs., you can repeat them ad lib.
    People on here have used various fibs, eg.
    'It's just till the doctor says you're a bit better/stronger.'
    'It's just till dad/mum is a bit better/stronger.'
    'It's just while the decorators/plumbers are turning the house upside down.'

    It's not quite the same, since she'd accepted that her house had been sold, but I can't begin to count the number of times I told my mother ('Get me out of here!') that I was looking for a nice little flat for her, just down the road from me. I was going to look on the internet the minute I got home, and once I found a really nice one we'd go and have a look together.
    She never remembered that I'd said exactly the same before, and it invariably pacified her for the moment, which is what it's all about.

    Equally, for the same reasons there is usually absolutely no point telling them the truth if it's only going to upset them or make them angry, without achieving a single thing.

    There are people who like to insist that it's a person's 'right' to be told the truth about everything, and that not to do so is some sort of infringement of their dignity, but IMO these people are usually those who don't have much experience (if any) of the day to day realities of dementia. (and who should therefore IMO keep their mouths shut.)

    Anyway, good luck.
  19. Il Gufo

    Il Gufo Registered User

    Feb 27, 2013
    No solutions to any of your problems - but just a big hug, with hopes that some things go your way this week. You are having a rotten time, and deserve to have at least some things sorted the way you want.:)
  20. poll1

    poll1 Registered User

    Jun 15, 2009
    It's done. It all happened yesterday, very quickly in the end - I was summoned to the temporary place, where the ambulance was already waiting outside to transport Mum to her permanent care home. Ambulances don't hang around, so there was barely time to have the conversation before she was in it with my husband and whisked away. Perhaps that was for the best. Inevitably the conversation would have become a labour-intensive, patience-trying, circular argument, and there wasn't time for that.

    We left her absolutely spitting tacks in the new home, but it's local to her area, she knows one or two other residents there and the the staff were taking her off to meet them.

    The fib is 'until the Dr says Dad's well enough', to which she responds 'that might never happen,' because, of course, dementia doesn't mean stupid. The fact is neither fibs nor the truth will do anything but make her rage. It's just a matter of degree. But it seems kinder to use the 'ill husband' line, rather than insist, over and over again, that she has a degenerative disease of the brain and can't be cared for at home any more. She wouldn't believe it anyway. We just have to wait the anger out.

    It hit my poor dad hard yesterday; a huge wave of sorrow and relief. I don't think it had sunk in that she really wasn't coming home this time.

    One day this will all become normal.

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