Later stages dementia - care at home?

Discussion in 'ARCHIVE FORUM: Support discussions' started by janey, Mar 11, 2006.

  1. janey

    janey Registered User

    Jun 29, 2004
    My Mum has been in a nursing home for 16 months now, following a bad fall at home. She is in the latter stages of vascular dementia. She is immobile, incontinent at times, needs to be fed and has swallowing difficulties. Dad (in his eighties) has spent practically every day with her, looking after her, driving there in the morning and back home at night. He will not take time off unless I'm there in his place, mainly because he doesn't believe the staff have enough time to feed Mum slowly enough so she doesn't aspirate. He wants to bring her back home, as he now feels he would be prepared to give up his own privacy and have carers in 24 hours if it means he can have Mum back with him. He thinks she could be better cared for at home. Can anyone give me any advice on caring for someone with advanced dementia at home please, eg. how to arrange care, adapt the home for hoist/bath seat etc. Any help or suggestions welcome! Thanks
  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    what you are asking really involves all the services,Social Care and Heath plus the GP.
    As always the GP is the gateway to help and advice,contact him/her first and foloww up with SC & H.
    I am not sure what the guidance will be in Dad's case.
    Hope this is helpful
  3. janey

    janey Registered User

    Jun 29, 2004
    Thanks Norman - I'll talk to Dad and suggest we see the GP together.
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Janey, I cared for my Mum at home till she died. I had regular respites and agency help to do it though. Its not easy, and all the help you get will be means tested. If your parents have savings they will have to pay for the service, my Mum did, until she became terminal after breaking her hip in hospital following admittance for a bad chest infection. When they told me she was terminal, I insisted she came home to be cared for with love by her family. I guess this is what your Dad wants too. If you have a Social Worker, talk to them. Also the GP. If it is possible, you do have the right to do it. But Janey, it takes a lot of doing so be sure you can cope before committing to it. We installed a stair lift, a bath hoist, baby gates and many other safety features. A baby alarm was also a great help and the little plug in lights that go on and off at dawn. Good luck, keep us posted. Love She. XX
  5. connie

    connie Registered User

    Mar 7, 2004
    #5 connie, Mar 11, 2006
    Last edited: Mar 11, 2006
    Sheila, what would we do without your positive input.....You have been through so much......and your guidance is appreciated.

    Thanks, Connie.
  6. janey

    janey Registered User

    Jun 29, 2004
    Hello She
    Thanks for the advice and encouragement. I agree it would be a huge commitment, and I'm not sure Dad would be able to cope, let alone me - that's one of my worries. Wanting to look after Mum and being able to do it well enough are two different things. I'll discuss what you and Norman say with Dad about talking to the GP and social worker. It will be very hard to convince them that Mum can be cared for adequately at home - all the professionals were dead against it when Mum came out of hospital which was why she ended up in the nursing home in the first place. Thanks to both you and Norman for sharing your experience of looking after your own loved ones - it is very brave and generous of you and helps me a lot.
  7. zan

    zan Registered User

    Jan 4, 2006
    Jane, Have you thought of the opposite to having your Mum at home with your Dad. Is the home the kind of place that your Dad would find acceptable to spend odd weeks in on a kind of respite basis? He would be with your Mum all day but there would be people around 24/7 to help care for your Mum. I worked in a respite care home where couples would come in together for a week or two. Only one of them needed the care but they couldn't bare to be parted from each other and the caring was then shared. I know that there are some homes where you would not be able to do this but it is just another idea to think about. I think, but am not sure that respite breaks are not charged for for about 6 weeks a year. If you do decide to bring your Mum home again, the best of luck . Love, Zan
  8. janey

    janey Registered User

    Jun 29, 2004
    Good idea Zan. but Dad wants to get Mum away from the nursing home, and unfortunately has refused to consider moving into a close-care flat on site himself. To be honest I worry that Dad is still 'in denial' about Mum, even though he talks quite logically about her illness. He is at loggerheads with the staff at the nh, and doesn't trust them to care for Mum unless he's in control. He is completely obsessed with her care in a nursing sort of way (eg. bowels etc). I feel the home is a good one (it is costing the earth so it should be!) and I know some of the staff feel hurt that he assumes the worst of them, when they are in fact fond of Mum and do their best for her. He is very vulnerable underneath, but has a domineering manner that puts people's backs up. Its very confusing - the staff tell me he's becoming forgetful himself (and I know he does forget things I've said) - they wish he would leave Mum's care to them, but he won't hear of it. This is why he wants to bring Mum back home (as well as because he is devoted to her and misses her dreadfully). It seems to be turning into an ongoing battle. Help!
  9. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Jan hi,

    just want to say that I suspect a big problem exists for the partners of those people suffering with Alzheimer's that does not present always present itself to the sons and daughters.....

    In the short time I have been dealing with this problem with my wife's AD - about 3 years since diagnosis... it has changed my lifestyle dramatically... I have had to adjust to restrictions and demands and in doing that have put other parts of my life on 'hold' for as long as it takes....

    I can clearly see that the day Monique goes full time into a home - I will be lost for a long time... So much of my life is now tied up with supporting her that there will be a void - a vacuum when she is no longer with me... It will be a function of how old I am and how fit I am as to how I cope with this problem... I suspect I am quite a bit younger than your dad but I can see where he is coming from.... You get so used to coping with the 'surrounding problems' of AD - the bowels, Insomnia et al that you imagine you are the only person who understands and can cope...

    This post is not offering advice it is just saying it is also tough when your 'raison d'etre' vanishes... I am making plans to sail to the Straights of Magellan via Brazil but .... only time will tell
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I agree absolutely that the position is as you say. There may also be a transitional period when the time comes - for you - where you may feel the need to visit Monique daily, or at least frequently. That is natural. I have been there, and to a large degree still am...

    But the knowledge that the care then being provided is really good is what makes the difference. Also having visibility of what then becomes of the rest of your life is also key.
    that is really hard when one also realises that one's own clock is ticking and one is at a certain age.....

    No easy answers, as with all of these things.
  11. Amy

    Amy Registered User

    Jan 4, 2006
    #11 Amy, Mar 13, 2006
    Last edited: Mar 13, 2006
    Hiya Bruce and Michael
    I think my dad is having difficulty adjusting, though he doesn't say much; the other day he started doing some decorating and passed comment that it was "therapeutic"and gave his day "structure". As there is a lot of decorating to do, hopefully it'll keep him happy for a while.

    Bruce you said
    Does it pass? I feel so guilty about my mum sitting in the Nursing Home unloved, I imagine the isolation she might feel (but probably doesn't). If I didn't know that either dad or I were going in once a day, I would feel worse.
  12. KaC

    KaC Registered User

    Feb 26, 2006
    I too feel guilt for the days I cannot visit dad and imagine him sitting alone and feeling abandoned by me and wondering where iam

    when my dad first went into hosptial last summer my son jamie and I visited every day but his schoolwork had gone down and I felt guilty that I was letting Jamie down as he wasnt having any quality time at home or with me as well as
    my elder son who's schoolwork also deteriorated and now dad is even further away it is even harder to visit

    it seems whuichever way i go i feel guilty that i am letting someone down

  13. janey

    janey Registered User

    Jun 29, 2004
    Describing things from your viewpoint is very helpful Michael, and Bruce too. I know my Dad did indeed put his own life 'on hold' several years ago, and it still is, to the extent that he would run short of food if I didn't shop for him (and he doesn't seem to care if he doesn't eat). I thought he'd make some sort of adjustment with time, and perhaps he still will - its just that he shows no sign of it so far (its eighteen months since Mum went into hospital and then into the nh). As for what comes next he doesn't want to know about anything that doesn't include Mum, including the rest of his life. He feels his life is worthless without her. I've tried everything I can think of but I think now I have to accept that its his choice to live as he wants to, whatever I might think. From a daughter's point of view, I've got two parents to worry about, in fact I worry more about Dad because at least Mum is being cared for (and would be even without Dad spending his days there) - he's surprised when I tell him that I'm worried about him, as though its something odd!
    To all the sons and daughters who feel guilty and upset about their Mums or Dads being in a nursing home, I'd say we all feel like that - its incredibly distressing in all sorts of ways. I try to hang onto the fact that Mum seems happy (thankfully the long drawn out stage where she understood that she was losing her mind seems finally to have passed as far as I can tell). She gives everyone a beautiful smile that lights up the room. If Dad really does want to bring her home I'll do my best to help him sort it out, but really I'm praying that he'll find a way to accept what's happening and that Mum really is in good hands. Sudden thought - maybe talking about bringing her home IS his way of coming to terms with things. Don't know. :confused: Anyway, enough rambling! Thanks to all of you for sharing your thoughts and trying to help - you have done.
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    The problem is that the situation becomes self-perpetuating. Being not adjusted becomes the norm. I've been there!

    The challenge is to find something that makes him want to do other things.

    Perhaps a project that involves their lives together. Perhaps he might want to write down his memories of how they met, their lives together etc. Maybe whatever photos he may have can be tied into that.

    Perhaps suggesting this saying "we really want to know more about Mum in the time you knew her, and the family will love to see this." Such an idea might galvanise him into doing things.

    Regarding food - I dropped 2 stones and have been desperately trying to put on more weight once again. Some days I simply ate Weetabix for breakfast... and that was all. One Christmas Day all I had was a fried egg all day. Food simply doesn't seem important.

    The way to cope with that is to tell him that he needs to eat for Mum's sake. If he isn't healthy he may not be able to see her, and how would she feel about that? Guilt does work!

    This is the most difficult part and I've been there too. So try that project to describe their lives together. That will include Mum, even if as a memory thing.

    Best wishes
  15. janey

    janey Registered User

    Jun 29, 2004
    What a brilliant idea Bruce - I will do as you suggest. Its very comforting to know that you responded to your situation in the way my Dad is re. not eating etc, and that you can look back at yourself now and see how you were then - it gives me hope that Dad will come through this stage too.
    I'm glad you're regaining your lost weight albeit slowly - I hope you're able to enjoy the process with some lovely food!
    Thanks again, and my best wishes to you and Jan.
  16. Robert

    Robert Registered User

    Feb 25, 2005
    Hello Janey,

    I am glad you started this thread, because I find myself in a similar situation as your Dad. I have been pondering the pros and cons of bringing my wife back from her EMI care home permantly and because it would be a major decision, it needs the utmost consideration.

    My wife has been a resident for just over a year and needs help with all functions, plus she can not stand or walk. My wife still knows me and understands what I say to her, but finds it difficult to respond.

    Since I am the only family carer, I would have to buy in any extra help needed. I spend around 5-6 hours a day at the care home every day and feed my wife at mealtimes, plus assist the carers with the other duties. I am not there at night and it is this aspect that is an unknown. I did read a book while caring for my wife before she went into the care home, titled ' The Selfish Pigs Guide to Caring'. An excellent book, in which the author explains how he copes with nightime duties.

    My greatest concern is what effect the actual move might have on my wife, plus if in the future she had to return to the care home. I bring my wife home every two weeks but she does not recognize it as home. I do not have a problem with buying a hoist, special bed and bathroom modifications etc to accomodate the change.

    I would greatly appreciate hearing from anyone who has been successful or otherwiswe in a similar undertaking.

  17. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Robert,
    If you don't mind, I am interested in your reasons for considering bringing your wife home, other than the obvious that you love her and want to be with her. What do you consider to be the pros for both of you.
  18. Robert

    Robert Registered User

    Feb 25, 2005
    Hello Amy,

    I'm happy to respond to your post, because any input, positive or negative and hopefully other carers experiences of a similar situation, will help me towards a decision. A monumental decision at that and I dread getting it wrong. I think the cards are stacked against me being successful, but I have to explore the prospect. I do not want to live the rest of my life regretting not having tried.

    Your question 'what are the pros' is a good one and forces me to use my head and not my heart in this matter.

    First and foremost, I want to care for my wife in our home, as I used to before she entered the care home (ch). Were the situation reversed (with me being the one with AD) I am convinced my wife would not have gone along with social serrvices and the professionals recommendations re ch admittance. Her general attitude is now very differerent compared to when she was admitted, being much calmer and not aggrassive during personal care.

    I believe my wifes quality of life would be improved. Although the ch staff sometimes take her to the tv lounge, most times when I visit she is sitting in her room on her own, withdrawn and unresponsive for the first half hour or so. Perseverance on my part seems to bring her back. I take my wife out whenever circumstances permit. At the ch, finding a carer to check my wifes pad before we can go out is often a lengthly process, plus the reverse when we return. There are times when ch staff are like hens teeth. In my view the ch is under staffed. On a good day the ratio is 1 carer to 6 residents, but staff turnover and use of agency carers to cover staff shortages aggravates the problem. The little likes and dislikes of residents are consequent casualties.

    My wife and I are both vegetarians and I take suitable food with me every day (to heat in the microwave) to suppliment the evening meal, the hot portion of which often contains only one element, although there are sandwiches, soup and desert. The ch is not geared to vegetarian meals and mostly just leave out fish and meat etc from the meal. The mid-day meals are better catered for.

    Compared to some I've seen, my wife's ch is probably better than many, being custm built and only 5 years old. The staff are generally happy and cheerful, but always busy and little time to chat to the residents.

    Overall, I believe I could improve my wifes quality of life and I desparately want to do that. The cost to me? Well judging by recent posts on TP many of us spend our days engrossed with dementia problems one way or another and visiting etc. So in addition I can expect a big impact on my time, interrupted sleep, more despair, doubt, worry anguish and our old friend stress. Daunting, is'nt it. Hopefully there will be room for satisfaction at having done the very best I can for my wife under the circumstances. My great fear is that the change may be detrimental to my wife in some way and of course that is why I'm asking TP members for their experiences.

    Take care,

  19. janey21

    janey21 Registered User

    Mar 11, 2004
    cared for at home!!

    hello jane,

    just been reading your posts about wanting your mam to be cared for at home. i fully understand this is want you and your dad want. my grandad suffers from alziemers and vascular dementia and me and my mam live with him. he is currently in respite at the minute in a continuing health care ward because we have had alot of changes done to the house ie an estension for a bathroom downstairs and to make the living room into a bedroom for him as he had pneumonia a while back and is unable to walk now. my grandad wants to be at home and when we bring him home on weekends when im not at uni and mam not at work etc you can see the change in him and he is so much more settled. having the house upside down to get the extension seems to be the easiest part, the hardest part is going round and round in circles with social services who are convince they dont have anyone to sit with grandad when he comes home when we are at work and uni!!! we were told that someone would come in and see to him then he would be lef for another three hours until someone else came in!! which is totally unacceptable. we are fighting on because i want my grandad at home and it is his right to be in his own home. he is better now than what he was when he could walk because it was very hard before as he would lash out and run away etc but now although he has to have pressure mattress etc he is more settled.

    i can fully understand you and your dad wanting your mam at home its natural.

    i hope that you get your wish

    with love jane x
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London

    Hi Robert, this rings a large bell with me because I always reckon it takes me 20 minutes or so to bring Jan to her best state, when I visit her most days. It is good to hear of someone else with the same situation. Good in that way, but of course, bad that it is needed.

    I can only speak for Jan's situation, and her overall level of care is - I believe - only attainable in a high quality facility such as the home where she lives.

    Staff in a care home cannot hope to bring the same level of attention - or the same appropriateness of attention - to a resident. When we are with a loved one, especially a spouse, the level of attention is quite unique, and we can see and sense things that a stranger never could.

    So, when I spend that 20 minutes bringing Jan's attention back to me, I understand that the staff who do her 1-to-1 care throughout the day could never do what I do.

    The care home situation dictates that I have to accept that there will be large periods of time when Jan retreats into herself. There is no other way, because she can't see, can't talk, can't stand, and spends much time on a mattress in a special room. When I join her I end up on the mattress beside her so I can speak directly into her ear - her brain has difficulty differentiating noises from many directions at once [this was an early symptom].

    Each dementia patient's situation is different, and Jan's may not map to your experience in the slightest.

    If I could have managed her care at home I certainly would have done so, therefore my advice to you is - if you are able - do it, for your sake and for hers.
    And that is what is paramount. We have to feel that we have done everything we can do.

    Very best wishes

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