when is it time for a dementia sufferer to go into care?

Discussion in 'After dementia — dealing with loss' started by ald, May 7, 2008.

  1. ald

    ald Registered User

    May 5, 2008
    My father is 80, has vascular dementia and cerebral atrophy. He lives on the top floor of rented accommodation and has until now been, staunchly, living independently. However just this week it seems he's stopped going out and prefers to stay in bed. He has carers going in mon - fri a.m to prompt him to have breakfast (they provide it) and he has meals on wheels at lunchtime. He is no longer capable of conducting any meaningful conversation, has no interests, is not using money and is not washing - but up until now - he liked to just go out the door and walk. This week he has been refusing entry to carers with food - so me and my husband have to keep doing emergency food dashes as we know he won't have eaten any thing. He can be very aggressive and would not entertain going in to any type of care - is his impoverished existence preferable to being 'cared for'? I just don't know what is for the best. Does he have the right to chose to 'die in his boots' as his gp said to me a year ago - or do I have a duty of care to make sure his basic needs are met?
  2. cariad

    cariad Registered User

    Sep 29, 2007
    Hello and sorry to hear about your Dad's deterioration.
    I personally think that when someone has dementia, there comes a point when they can no longer make informed decisions for themselves and that falls to next of kin.
    I don't think many people go into care without resistance. Does your Dad have a social worker or CPN that can do an assessment as things have obviously changed.
    My thoughts are with you at this difficult time.
  3. Quack

    Quack Registered User

    Mar 25, 2008
    Quality of life

    Sorry to hear about your Dad.

    I think people make the decision for a variety of reasons and your Dad's quality of life has to be respected. Will going into care give him a more stable enviroment ? Better and more frequent food/medication, improved personal hygiene? Will it give you and your family, peace of mind so you can spend quality time with him rather than worrying about his safety?

    Your Dad's wishes are important but what would he have wanted for himself when he had the ability to think it through ?

    There is no right answer but we all have to make our choices however hard they are.

    The other thing to consider is that sometimes we class 'care' as a backward step but some homes enhance the lives of the residents so they can be positive choices.

    Good luck and no one can comment until they've stood in your shoes.
  4. ald

    ald Registered User

    May 5, 2008
    thank you so much for your replies - I am feeling very tense at the moment as things seem so desperate with my father- and it really helps to know that there are people out there with some understanding of the constantly frustrating and draining situation we find ourselves in - he is so angry and so confused - he wouldn't let the doctor, I'd arranged to come out and visit him, examine him today and threw something at him! I'm hoping he's going to be reassessed very soon, his social worker and psychiatrist are now up to speed with how he's unable to access the care we've tried to put in place for him. I'm also really wrestling with the fact that I feel really cross for being the only one (along with my fantastic partner) who is taking any responsibilty for him (and as a result feel constantly guilty that I'm resenting him) as my mum divorced him 30 years ago for good reason - yet there is no one else out there who can sort anything out for him . . . :( ... he's always had very few social skills and has been a bit of a loner - so I really worry about the 'home' type of option - but have to balance it against the fact that he now seems incapable of meeting his own basic needs . . .
  5. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    You just want to make sure Dad is safe.
    That is the priority.
    Take care
    Barb & Ron
  6. Rustyangel

    Rustyangel Registered User

    May 15, 2008
    Hi Ald

    I can relate to how you feel and understand how very draining it all is. My Dad also became aggressive as his dementia progressed, having been a very placid man all of his life. Sadly I had to pester Social Services and the Mental Health Team on a daily basis to re-assess his needs.

    One thing which may be worth a try is respite via Social Services. It might be a good way to see how he adapts to being in residential care as well as giving you and your partner a much-needed break. I do appreciate it a very difficult thing to do and can be distressing for all concerned but there are positive elements too. I had an image in my head of what residential nursing care would be like, but when I visited a few with a view to placing Dad in one I got a very pleasant surprise. The Local Authority ones I visited were clean, well-managed and run by friendly, experienced and competent staff. Perhaps a visit to the ones near you may help you reach a decision?

    Good luck and keep posting

  7. Just thinking

    Just thinking Registered User

    May 7, 2008
    North west
    staying in bed

    Hi Ald
    I'm glad you asked that question as I was thinking of doing so. My mum isn't as far along yet (I don't think?) but she stays in bed a lot too so I worry about her quality of life. I feel she'd be better off in a home as I think she'd have company and something to do as she often asks me what she should do with her spare time and I'm at a loss as to what to suggest, as it's not easy to do anything unless you can remember 'how'. Mum's even said she'd like a job to keep her busy!! She lives alone which worries me and if she didn't have carer's going in she wouldn't eat either. I'd like a care-home place so she'd atleast have structured days which hopefully would increase her self-esteem but I'm blowed if I know how I'd go about it as she'd probably resist. I hope to get her into a day centre a couple of days a week so she'll have something to do for part of the week and if I manage to find one specifically for people with AZ then she should enjoy herself as I believe the ones nearby are very good. I wish you well with Dad,let's know how you get on.
  8. Just thinking

    Just thinking Registered User

    May 7, 2008
    North west
    independent living

    I just wanted to add another couple of points which I forgot above.
    When I asked our GP about moving a person into a home I was told that I'd be getting into the realms of having to 'section' which I think means you'd need a specific 'power of attorney'. It seems it's not that easy to do because legally, a person has the right to live as they desire even when they're unable to make an informed decision... seems odd to me that a vulnerable adult 'could' in theory, be left to 'get on with it'.

    Also, as part of your thread, I noted your Dad liked to go out walking. I worry about my Mum doing that as it's quite scary to think about what could happen, but I wonder if I'm worrying and talking her out of it unneccessarily....perhaps she'd be ok and happier if she did. What do others think?
  9. ald

    ald Registered User

    May 5, 2008
    an assessment - yes, no, possibly later. . .

    Thanks for your messages I'm finding them really supportive.
    Yesterday we were told that an escalation of events over the weekend affecting my father's neighbours would result in an Appointed Social Worker, my dad's dr, and social worker convening at his house in an attempt to get him in to hospital for an 'assessment' - ie sectioning him if he wouldn't agree to come for treatment. I spent whole day and night feeling very stressed only to get the call after lunch that my dad wouldn't let them in to his flat (very predictably) as he was in bed and that they didn't have a warrant to forcibly enter at this stage and had had 'a positive engagement' with the care agency that morning as he had allowed them to give him breakfast. Argh! Despite me having my daily phone call from meals on wheels who he doesn't now let in at lunch time! All the reasons for getting him into hospital remain, eg not eating, washing, sleeping all day, being up at night, not going out, being very disorientated and hostile, being very underweight and we think in some kind of physical discomfort (although he can't be relied on to give consistent evidence)- so we continue on tenterhooks. So we're back to fielding 'phone calls, emergency dashes and checking whether he's alive regularly when agencies can't gain admittance. They've said they're not discounting sectioning him for assessment and it could happen depending on events, again, in the next few weeks. He was trying to shave with a knife this weekend, we've previously removed vegetable peelers which he was using for the same purpose six months ago - and because an outside agency witnessed it I held out hope that that might have helped precipitate some action being taken today - we've been trying to get it recognised that he's a danger to himself for what seems like an age now but it really does feel that nobody is really bothered enough to help him be properly safe . . . wishful thinking . . . sorry if this sounds a bit like a rant, but it's been a really draining couple of days with no resolution.
  10. Lynne

    Lynne Registered User

    Jun 3, 2005
    #10 Lynne, May 25, 2008
    Last edited: May 25, 2008
    Oh Ald, you rant away sweetheart ...

    What IS it with some of these "professionals"? :confused: Do they think we make up stories for our own amusement? You tell them Dad will not let anyone but you in; so, what makes them think that - magically - he will smilingly open the door to them, a bunch of strangers, when they call?

    All I can suggest is that you put in writing everything that you have posted here (and more if there is more) and send this information to the head of your Dad's GP practice (NOT to his own doctor), and to the head of the local social services team, copy to your MP and the Minister for Health.
    You might mention that S.S. have a DUTY OF CARE towards vulnerable people in your Dad's situation, and you expect them to fulfil that Duty.
    At the end of your letter, put a list of everyone you have cc'd in on it, and maybe even 'just mention' the possibility of the local press taking an interest. Obviously, keep a copy.
    (OK, so it's a bluff, but can they bet on that?) Hopefully it should engage someone's attention. Or is it only me that feels bolshie? :mad:
  11. BettyBoo

    BettyBoo Registered User

    May 4, 2008
    Respite Care

    My Mum is 84 with Vascular Dementia. She also has TIAs. I made the decision quite some time ago that my Mum would be safer in a home, but it is emotionally draining looking round these places. Social Services are also looking but tend to keep within their budget and some of the places leave much to be desired. She is at present in Respite Care, this being the second time in a couple of months. The other night she was on one of her wandering trips and fell and cut her arm. Off to hospital again but this time I stayed at home and let the home deal with the situation. Selfish maybe, but I have had many trips over five years to the hospital and was glad someone else took the situation over.
    To sum up, make sure you choose the right care home for your Dad if you come to that decision.
  12. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Betty Boo
    SS only pay up to a set amount,but if a home that you prefer costs more you can pay a top up for the difference.
  13. ald

    ald Registered User

    May 5, 2008
    and so it continues . . .

    my father lives in a top floor rented flat and the other tenants are now rallying in their dismay that nothing has yet been done re trying to get him into care (he keeps taking their post, banging on the floor, locking himself out and recently the base of his kettle was found chucked into the garden?!) The psychiatrist is on Annual Leave until 16/6 and the social worker says he'll discuss another attempt at assessment upon her return - (I'm not holding my breath) Meanwhile I've spoken to a couple of really nice care home managers and am going to look around one on Friday - to see whether it is feasible for my father... meanwhile we continue to react when needed.. . I was really impressed talking to a Brunelcare home manager re their person-centred care - anyone else had such a positive first encounter?
  14. Taffy

    Taffy Registered User

    Apr 15, 2007
    Dear ald,

    I hope that you can sort this situation out to your likening. I can remember when my mum was at home and she used to help herself to other neighbours mail. Good Luck! Love Taffy.
  15. ald

    ald Registered User

    May 5, 2008
    My father has been sectioned!

    After a pretty dreadful week, including neighbours rescuing my father after locking himself out for the umpteenth time, after a walk in his pyjamas - I cannot describe my relief when, with the help of my husband, the mental health team finally got access to my father this morning and he was taken into hospital (under a Section 2) for 'assessment' - he will be looked after and assessed for 28 days! Hopefully we are at a crossroads ....
  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    That's good news, ald.

    Your father will be safe for a month, and hopefully in that time they will be able to sort out his mediction, and arrange for his future care.

    What a weight off your mind!:)

  17. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Ald

    Thank goodness you can breathe easy for a few weeks; no, you're not out of the woods yet but at least you know he is safe.

    Take a few deep breaths and catch up on some sleep!

    Best wishes
  18. my little girl

    my little girl Registered User

    Aug 23, 2007
    A nice hotel


    I am glad that there seems to be a light at the end of the tunnel for you.

    I don't know if this advice will help but my Grandma was staunchly independant too, right up until the point when a stroke meant she couldn't possibly remain in her own home. It is a generational thing I think as she always made me promise not to let my mum put her in a home (I had to break this promise when it became clear she could no longer look after herself - a guilt I have carried ever since).

    My mum managed to obtain power of attorney but I know that in order to get my Grandma to accept leaving her sheltered accommodation bungalow (where she had lived for over 20 years), my mum told Grandma that she needed a holiday and therefore my mum had found her a nice hotel just up the road from our house so we could visit her more often. I don't know why or how but Grandma just accepted this & never once asked me when she was going home. I don't think she even asked my mum - & if she did her dementia was so advanced that she couldn't remember doing so or how long she had been on "holiday" in her "nice hotel"

    Take Care

    My Little Girl
  19. aaquinn

    aaquinn Registered User

    Feb 21, 2008
    I feel for you - I too have had to make decisions on my own over the last monh and eventually got mum into a care home - you know the hardest part is with ourselves and allowing acceptance that we have done the right thing - that these poor souls need 24hour help and there is never a right time to set the ball rolling. Sometimes circumstances help those decisions be made for us as in your case and I hope you now accept that your dad is in safe hands and will get the help he needs.I think it is important that you allow yourself time tocome to terms with all of this. I think as with me it is taking some time and like grieving is a slow and painful process. However, your dad is safe and you can rest knowing that from now on the help will be provided. Remember though that you should continue to communicate with the hospital throughout, for you have much vital information to fill in the gaps that they may not be aware of - never assume - fight your dad's corner and you will have helped him a lot. Good luck and take care. aaquinn.
  20. Morag Wild

    Morag Wild Registered User

    Mar 3, 2008
    Big decisions are hard

    I really sympathize with your problem. My mum was living alone in a flat untill last year i managed to get her a lovely flat in Sheltered Accomodation.

    We told her that the council had to renovate her old flat and that she had to move into the new one so they could do the work. She accepted this for a while and then kept rejecting it and it was becoming very hard work. The day arrived and we drove up from Sussex to the Isle of Bute to do the move. I had to keep taking her out for tea at cafe's while all the furniture was moved to her new flat. For ages after the move she kept wanting back to her own flat and accused us of putting her in a home and demanding that I got someone to her 'NOW' to get her out of there. We just kept the story up about the council. It is terrible to lie to someone like that but eventually she has settled and can no longer remember the other place. There is a warden and lots of other people around to look after her and she is no longer wandering round the town in the middle of the night, getting picked up by the local police. Her latest thing is not knowing how to answer the phone, so i haven't spoken to her since 30th June as she picks the phone up and says hello and then I think she just puts it down on the coffee table and watches the tele. The good thing is, she is safe, looked after and isn't in danger any more.

    You should maybe try to think up a story to get your dad out of his flat (tell him it's just temporary) and go from there.

    It is very very hard though and you have to be very tough. It is the best thing in the long run.


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