Is care homes the only option?

Discussion in 'End of life care' started by Susan10, Jun 29, 2016.

  1. Susan10

    Susan10 Registered User

    Jun 29, 2016

    Sorry for this huge long post! I meant to be short but I was trying to put in as much information as possible! I just wonder if anyone can tell me if there is alternative to care home as I don't think my mum will get on well there at all!

    ... My mum, who is 81, developed vascular dementia after having a series of silent strokes. She was also hardly eating. She was taken into hospital, we were told for 2 weeks to do tests to find out if she had cancer too. She has now been in hospital about 9 weeks & now they are saying she can't come home and has to go into a care home. The tests were eventually done and they couldn't find cancer, though are still puzzled why she won't eat and weighs now just about 5 stone. She deteriorated radically in physical and mental state since going into hospital and now can hardly walk. Before she went into hospital, she was going up and down stairs. I just think she was left on her own far too much in hospital. She'd just be on her own, lying in bed without any company when we go to visit. We visit every day but the visiting hours don't start til 2, stop for a few hours for meals and then are just an hour in the evening. I just think that made her deteriorate even quicker and now they are saying she has to go to a care home and I worry that will be just as bad.
    I just got so annoyed with the social workers, who have just suddenly popped into my mum's life, age 81 and I hate that suddenly this is some social case because they want money for a care home! I feel dementia is not being treated as an illness and because she probably hasn't got cancer, she's just been tossed aside and we've been told a care home is the only answer. I know, if my mum could understand what was happening, she would hate this! She has always been so independent and I just feel so bad that now there isn't even any other options. It's terrible to think, but I just feel this wouldn't be happening if she did have cancer. I think she would have had better care and more options. I am really angry that dementia is somehow classed as a social, rather than medical problem, or so it seems.

    Really though, I just want to know if anyone knows of alternatives to care homes if that is the medical opinion? I really think she could manage at home with me and my dad here and a package of care. She just sits quietly for most of the day, and from what I have seen there is nothing more in hospital for her, she has less stimulation than at home and just surrounded by unfamiliar faces and things.

    Thanks for any advice on what else I could explore instead of a care home!
  2. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    #2 Toddleo, Jun 29, 2016
    Last edited: Jun 29, 2016
    Hello there Susan, the simple answer I suppose is "yes" there are alternatives to care homes, but they should never be entered into lightly. There are obvious pros and cons to both.

    We provide 24 hour care for mum in her own home, that is my sibling and I, plus a package of care, organised with the help of adult care services and a Direct Payment budget.

    It has worked although it has been incredibly hard as those of you familiar with my other posts would testify.

    However our issues generally have been related to mums medication side effects, psychosis, and aggression, as my mum was certainly never one to sit quietly for most of the day! (exactly the opposite.) Mums BMI was 14.5 when she was in hosptial last year, and she put on 2 stone once released into our care in her own home, (we were pleased with that achievement!)

    If your mum is manageable in that regard, and you are willing, then I would say have a go, you do not know until you try. It can be very taxing on family relationships as other posters would agree, but fortunately this has not been a problem for us.

    I have found adult care services to be very on the ball and helpful (but I think maybe that is unusual!)

    Any other advice, just ask.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    May I put the case for a care home?
    I know that they have a bad reputation, but few are abusive and many are very good.
    It sounds like your mum needs 24/7 care and, even with the best will in the world, it is not always possible to provide round the clock care in a home setting and social services will not pay for this. If you get a good home the residents will not be neglected, unlike a hospital which is a very bad environment for someone with dementia. There will always be someone to talk to, activities are organised and the staff should be dementia aware.
    Mum is in a care home and (like others on here) my experience is that she has positively thrived. She has made friends and joined in the activities which surprised me as she was always a very fiercely independent lady who tried to make me promise that I would never "put her into one of those homes". When she went in she was plagued by delusions and pretty paranoid. She was also not eating and drinking. Since then her paranoia has gone and her delusions are almost always pleasant ones (she thought she had tea with the queen!). She also put weight on again. The home she is in is a small independent home that is a bit scruffy, but homely and with nice caring staff. It is not perfect (nothing ever is) but the problems are few, have been amicably resolved and I have no regrets.
  4. Trini

    Trini Registered User

    Dec 7, 2015
    Hello Susan
    This sounds very much like the experience we had with MIL. She spent a long time in hospital and deteriorated. On discharge back to her own home SS provided 24 hour live in care for 2 weeks to assess her needs. It was clear then that she would either have to go into a CH or have 24 hour live in care. She is self funded and the family have decided on live in care. This has been in place for about a month now. She continues to deteriorate. She is now doubly incontinent, needs help eating but still has a good appetite. Her carer takes her for short walks in the garden and tries to keep her occupied. Otherwise she would just sleep all the time. Fortunately she sleeps well through the night so we have not had to put night time carers in place. The live in carer is always there just in case but does not get disturbed. I think she still recognises us. The family think she gets better 1:1 care than she would in a CH. I am not convinced myself but not my decision. We have been lucky with the carer we found. She does seem genuinely caring and tries to do the best for MIL. I don't think she knows where she is to be honest. I am sure if you found the right CH it would be just as good and a cheaper option to live in care.
  5. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    #5 CJinUSA, Jul 4, 2016
    Last edited: Jul 4, 2016
    I kept my mother in my home for 9 years. I also work full time. My OH helped initially, but as my mother needed companionship more and more, we hired assistance. If there are two of you there, and you want her home, I want to say it's possible. There is no need for your mother to be shunted off to a care home if you want to care for her.

    At least it would be worth a try to see if your father and you can manage. A care package (someone to come help with bathing, etc.) would help you, and you'd have her to yourselves and make sure she is socialized, and so forth.

    I loved my mother very much. It was trying, at times, having her here, but I would definitely do it again. I wish I *could* do it all over again. I'd have a better sense of what I was getting into, and I think I'd do a better job. I still miss her. I am ever so grateful we had her last, most vulnerable years with her.
  6. Safar

    Safar Registered User

    Aug 2, 2016
    Susan, if you want your mum home and know that you can provide the care for her, then fight for it. My oh deteriorated every time he went into hospital as well. I despaired every single time he was admitted. Care at home is a great option so long as you know you are able to do it and you sound as though you can.
    Good luck!!

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