I am deluded - to want dad home

Discussion in 'I care for a person with dementia' started by flossielime, Mar 17, 2015.

  1. flossielime

    flossielime Registered User

    May 8, 2014
    Ignoring my previous ramblings about a place in the sun!This is the serious one.

    My dad is in hospital. Since admittance for various reasons my dad's dementia has progressed.

    Before going in hospital in lived alone with 4 half hour care visits a day.

    He now needs 24 hour a day support now as he does not have any concept of risk. I think this can be best provided one to one at home. In a nursing home I dont think that they could meet his needs (unless he was given one to one there) and I dont think he would be happy.

    BUT I feel like everyone is against me. I am sick of social workers, nurses, family and carers telling me he should go into a home. But I am worn down and now starting to doubt myself. I should say my husband, brother and mum all agreed with me that we should at least try him at home prior to resorting to a home if say after 3 weeks care at home is not working.

    Do you think I am deluded?- if the professional say he needs a home should I accept it? I just feel he deserves a chance even if just for a few weeks at home. Even if it just to say we tried everything before accepting one of the grim local homes. But I feel worn down.
  2. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    No, I don't think you're wrong to want to try. If he can still walk a bit, it's worth a go and he might improve once home. If you are wrong, then you'll have to rethink it but at least you'll always know that you tried.
  3. Bod

    Bod Registered User

    Aug 30, 2013
    Is it fair to your father, to move him from pillar to post, just so you can say "we tried" but unfortunately it didn't work out.
    In a correctly chosen Home, he will have expert care, and equipment available 24 hrs a day, 7 days a week.
    You will be able to visit fresh and cheerful, at home you will be run ragged, learning as you go, making mistakes, and believe me there are many, many here who would snatch your arm off, to have the same offer you are being given.

  4. Polly1945

    Polly1945 Registered User

    Oct 24, 2012
    Hi Flossielime

    I know how you feel about people telling you that he should be in a home :mad: I had the same with friends and relatives when my Mum was diagnosed with Alzheimers. but with the support of my husband and son we managed to keep Mum at home for nearly 5 years, until the right time came when we knew she needed more 24/7.

    The main thing is having the support from your family. What harm can there be by trying it and if it only works for a few weeks or months then you have all tried your best.

    Would you be the main carer or would you have some help. Is your mother able to cope with Dad at home 24/7?

    At least it would give some breathing space to keep your eyes open for a nice home if that is what the decision will eventually be.

  5. flossielime

    flossielime Registered User

    May 8, 2014
    Thank you peggy - I feel so much better that someone outside my immediate bubble agrees. My dad can walk about 15 metres with a zimmer. The physio has wrote him off in terms of improving much beyond that but I think (with no medical training yes gut instinct) that once home (with a private physio and patient one to one carers) he will get better at walking. I realise the mental stuff is a down hill one way street.
  6. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    I agree with Peggy Smith. If your Dad goes straight to a CH you will always be wondering if you could have looked after him better at home. At least giving it a go will answer that question for you. You may well find that it doesn't work out and he does need to go into a CH but you will have peace of mind that it is the best and only option.
  7. flossielime

    flossielime Registered User

    May 8, 2014
    Thanks Pauline,

    My mother is in a nursing home - she has capacity but physically ill so has no ability to care. I would help out (I live around the corner but I work and have 2 children age 7 and 5 ). I am hoping via NHS CHC, social care direct payments and savings to employ carers. Maybe if it works even remortgaging his house to pay for care at home.

    Bod - i understand your pillar to post argument. But my dad has lived in his house 50 years. He has been in hospital for the first time in his life and been in 3 wards over 5 weeks. All he wants to do is go home. He says it frequently. i know from reading the posts of others dealing with advanced dementia that it may turn out that his home of 50 years is not the one he wants - but finger crossedX
  8. flossielime

    flossielime Registered User

    May 8, 2014
    thanks Aitchbee - I appreciate the support and that is what I think - even if does not work I will have the tried and know I have done my best for him.
  9. Perdita

    Perdita Registered User

    Jun 22, 2009
    Suffolk, Uk
    Hi Flossie, (I think I 'know' you from a craft site beginning with f :) )

    I brought my mother to live with us after she spent 3 years in a care home and I spent 3 years feeling terrible about it. She's been here about a month. It's damned hard work because she's so far along with the ad bless her, but I wouldn't change a thing, I'm so glad to have her here :)

    Don't doubt yourself, do what you think is best for your dad :)
  10. flossielime

    flossielime Registered User

    May 8, 2014

    Thanks, I think it is the best for my dad. I think summer in the garden and pottering around his own house will be better than any pluses of a NH. BUT the thing is I absolutly realise it might that work and I might have to say even in just a few weeks that we cant cope and he needs a home. But suely he deserves a chance. i know ifit was me I'd want a chance in my home house before being bundled off to the funny farm (my dad's words not mine!)
  11. barny

    barny Registered User

    Jan 20, 2006
    No you are not deluded. You want what is best for your dad. Try it and see, you should get help and advice from OT,s physio, and support from his Gp. I had mum at home with us until the end. Was not always a bed of roses but am so glad we managed it. I could not have done so without the support of my family. Good luck!
  12. canary

    canary Registered User

    Feb 25, 2014
    South coast
    By all means try it and see flossie, but might I suggest that you have a plan B tucked up your sleeve, just in case?
    There are often waiting lists for care homes. I would suggest that you get his name down on a waiting list for a couple of them. This doesnt mean that you have to accept a place if it comes up.
  13. flossielime

    flossielime Registered User

    May 8, 2014
    Just realised my thread should have been titled Am I deluded not I am deluded but judging by the way today has gone I clearly Am deluded!!

    Well I've had a care assessment and quote for home e live in care. This is using carers from overseas, so I was excepting it to it to more reasonable than it turns out to be. My dad would need a day carer and a night carer. The cost would be £1700 a week. So with the best will in the world I dont think the NHS or SS will pay that.

    So I went on to plan B. Re looked at the NH's locally. Still of the opinion that the 3 local ones are grim. but realise times are desperate so asked the manager of the most recommended one (by friends who have had partners/ parents in there) if they had a vacancy and would take my dad. Well they did not have a vacancy but what she then told me would be her conditions of taking him. These conditions floored me.

    My dad would need one to one care there (Ok so far). But the NHS wont pay this indefinitely (ok understandable) so this would be while 'his chair' is made. I was 'oh he is ok he doesnt need a special chair'. Oh how deluded was I. This is a special restraint chair. He will sit in this with a 'special belt' on whilst the carers are with other residents. I was HORRIFIED. So I said like a sort of straight jacket, oh yes but its all legal - they would write in a book the times he has the belt on and why, and they'd have a DOLs in place - oh well that is all reassuring!!!!! NOT

    OMG this is a steep learning curve. i thought we lived in a civilised country where the old and the ill were treated with respect. I am starting the learn that when you are old generally but especially old with dementia anything goes.
  14. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    #14 CJinUSA, Mar 20, 2015
    Last edited: Mar 20, 2015
    My father died in a hospital, straightjacketed, in a tied-in-his-bed condition. He had a heart attack, they say. He didn't have a heart attack, he had a broken heart, because my mother wouldn't have him at home and totally rejected him in his demented state.

    I'm sorry. The system there and here (in the US) is broken. These methods seem to be the only way that a small number of workers can take care of the huge numbers of people needing care.

    I keep my mother in my home and hope she dies here. I don't want to see her in a home where she will be neglected or worse. My father's situation broke my heart; I was not in a position to take him in. I hope you find a better solution for your dad. My heart goes out to you.
  15. Leswi

    Leswi Registered User

    Jul 13, 2014
    Could you advertise and find a live in carer yourself. You would not need to pay anything like that amount of money. You should still be able to have SS funded carers to assist at certain times.
  16. Jessbow

    Jessbow Registered User

    Even on minimum wage, you are looking at over £1200 a week.

    I know your concern I high risk of falls, but if you don't get carer 24/7 , to watch him how would you manage? What happens when carer is cooking his lunch?
  17. Bernadette2

    Bernadette2 Registered User

    Mar 13, 2015
    Dear Flossielime
    From what I have seen on this site and elsewhere, hospitals are not dementia friendly environments and can make people's conditions much worse. If your Dad has never been in a hospital until now, and has been moved around from ward to ward, Lord knows how he is feeling and I would like to hope that if you did take him home he might regain some peace of mind. In "Where Memories Go" a memoir by Sally Magnusson, she describes how her family and a team of carers had to bang their heads together every week to create a rota of shared care in order to keep her Mum at home until the end. I think that we all have aspirations about how we might fight this illness and what might be best for our loved ones, and there's nothing wrong with that, ( I too would desperately like to keep mum here at home) but I'm not sure in reality what will happen and I think you are right to be questioning and looking at all the options.
  18. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    I don't think anyone can prevent falls 100%.Even if you are standing right next to someone it can happen. Though there is a lot that can help to reduce risk.
  19. Angela T

    Angela T Registered User

    Jul 13, 2014
    I don't know if it would cost much less, even if you do advertise yourself instead of going through an agency.

    The basic cost of live-in care is cheaper than many NHs, but that supposes the carer sleeps at night. If a carer is required 24/7, then I think it gets very expensive - and you would maybe need to have equipment installed, if your father's mobility is very much reduced...?
  20. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    You are not deluded! It IS possible :)

    Hello Flossie, this is my first post on this forum, pls excuse me for any mistakes. I browse occasionally but mostly I try not to think too much about dementia in my free time! However I think it is about time I start speaking out, and your post really wrenched my heart. The thought of your dad in a restraint chair is sickening. Okay okay I am sure there are good 'reasons' and good people doing it, but it is still stomach-turning.

    I just had to come here and tell you (and I know it will anger some people because it is enraging) my mother-in-law receives in the region of £1,760 a week under continuing health care funding and has done so for almost five years. This is reassessed annually and because her needs are so extreme and complex she has continued to qualify, so far. Of course it might change, as her dementia progresses she has become calmer because she is less aware, so I suppose they might terminate the funding. But we have managed to keep her at home for five years when the doctors said she would be dead in six months because of her level of disorientation and behavioural aggression etc (she was screaming virtually 24/7 and lashing out, carers couldn't cope) At times it has been a living hell, but with love and understanding she has come a long way and we have obviously learnt a lot about what her needs are and how to meet them, that no professional carer would have had the time and intimacy to work out.

    My point to you is it IS possible and the NHS can fund at that high level (we have been told we are one of the three highest budgets in the borough). It was the NHS who left her in that state after an operation and they awarded us Continuing Care without us really knowing what it was or how 'lucky' we were. Of course they didn't expect her to live that long but the point is that they have a system of assessing your needs and if you meet certain criteria then you qualify. I don't know how you go about getting an assessment but I would suggest you badger them until you get one.

    Right now I would say we wouldn't regret our choice for a minute, and she's not even my mum. That is not to say it isn't incredibly hard and has been soul-destroying (today is a good day so am using the past tense there!!) We also have two family members caring full-time not working, in addition to the funded care (which covers night carers and some day care).

    Happy to talk to you about this privately if you would like. As I said this is my first post but I'm sure I will figure out how it works if you send me a message!

    Good Luck, and absolutely, follow your heart. XXX

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