mum is only 70 and in care home

Discussion in 'ARCHIVE FORUM: Support discussions' started by peppa, Nov 21, 2007.

  1. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    My mum is 70 and has vascular dementia and many medical problems (heart surgery, diabetes, poor vision, etc.). She's been in and out of hospital this year, sometimes in a terrible way, with hallucinations and delusions and forgetting how to walk. We moved her to a care home mid year and initially this was ok. It was more like a hotel than a home and this had good as well as bad aspects. Mum got mobile, joined in activities, made a friend and then wanted to go home.

    She then got ill (i feel partly because staff did not know her well enough to notice her deterioration), spent 3 weeks in hospital and begged us to let her go home. When we said it wasn't possible she asked us to take her to another care home she'd seen earlier. We arranged this (first taking her to see it again to make sure she knew what she was doing)and shortly afterwards she moved.

    She has been in new place for just over a week now and it's not going well. We have a lot of faith in the staff and feel this is a better place for her, but she is begging us to get her out, saying she would rather be dead than stay. One of the main problems is that most of the other residents seem to be asleep/in silence in their seats all day, and mum is not. She may be super frail, but she is very lucid at the moment and is clearly freaked out by the others around her. She talks of suicide, criticises everything, can't believe she made the decision to go there.

    We are really confused. We could arrange for her to go home, but would have to get 24-hour help and make changes to the flat...but she really is so weak at the moment it would be mad to take her out. She thinks she is dying, but there is nothing to suggest this is true. She is only just out of hospital and needs proper monitoring, which I think would be done more effectively in a care home than by new carers in her flat. Is it cruel to make her stay there? Can it make her even worse to be somewhere that she hates? Does anyone have any experience of how the more lucid residents cope in a care home with others who have more advanced dementia? I'd really appreciate any advice. At moment am trying not to ring/visit as it distresses us both.

    thanks, peppa
     
  2. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear peppa.i am sorry for yours and mums plight.Unfortunatley there are redidents all over who feel the same way,unfortunatley again there are varying degrees of dementia as i am sure you know.It would be impossible to have homes for each stage of the disease the catagories tend to have 2 in a home.emi/residential,emi/nursing'dependant of level of care needed and you will always find homes of mixed care needs.are we talking emi/nursing on this one?
    love elainex
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Dear Peppa,

    I know this sounds decietful, but could you adopt delaying tactics for your mother. It has been tried quite successfully by another member, who said the house needed some repairs to make it safe to live in.

    You know your own mother best, so know what might work if you are prepared to go down this route. It doesn`t sound a very nice thing to do I know, but if your mother really needs residential care, it might be one way of calming her down, by giving her some hope, albeit false hope.

    I hope I haven`t offended you by suggesting you don`t tell the truth.

    Love xx
     
  4. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    thank you elaine and sylvia. mum is in residential care with no nursing, but staff seem to have pretty good setup for caring for those who need some level of extra care.

    i do realise there are a lot of people out there who may not be 'happy' to be in a care home, and that there are all levels of dementia, although i imagine there are more who are at more advanced stages as maybe families take care of their parents for longer. in our case mum's dementia really kicked in after her bypass operation (two years ago) and it's been hard for us to figure out what the problem is. basically she has aged massively in her body (struggles with walking, very thin, falls often)and although she has quite a lot of memory problems and can't cope with money/logic she still feels as if she's 60 and imagines herself trotting off to the shops independently/going on holiday, but both these things are no longer possible without masses of outside help.

    as you say, sylvia, we could try delaying, and maybe this is best option given the time of year...the last thing we want is for her to return home and then find access to doctors etc is patchy over christmas. i just feel it's such a hard balance to strike, not knowing whether ultimately she would just be 'happier' at home, even if she is more at risk. it is also frightening thinking of employing a carer or two on whom you have to rely totally, without really knowing much about them. at least in a care home there is a system that is inspected and you know people know what they are doing, or at least what they are meant to be doing!
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear peppa, that is a big question:
    You may find that even at home she is not settled or happy.
    Initially she was content in the first care home.

    I think you have to try to play the waiting game, using whatever ploy works. If she really does not settle maybe you will have to think again. After all, a week is not very long for your mum to adjust to yet another change after her 3 weeks in hospital.

    (I had problems when my partner finally went into permanent care, in a home of his choice. He then accused me of 'abandoning him')

    Anxious times I realise. Please let us know how things go on.
     
  6. sooty

    sooty Registered User

    Feb 17, 2007
    50
    Nova Scotia Canada
    I just feel it's such a hard balance to strike, not knowing whether ultimately she would just be 'happier' at home, even if she is more at risk. it is also frightening thinking of employing a carer or two on whom you have to rely totally, without really knowing much about them. at least in a care home there is a system that is inspected and you know people know what they are doing, QUOTE]

    Hi Peppa
    I know how you feel. I have just got back from the Uk to Canada having had to put Mom in a nursing home with vasculia dementia and othe medical conditions(heart ,stroke,aneamia,endema). She also was in hospital for 3 weeks and would have needed a lot of care to come home to carers I could not monitor and still she would have been at risk at night. She is in a home with different levels of dementia and hers is not as bad as many others. The staff place her in the lounge with the residents who are there for other reasons a lot of the time, and she likes that. When she is on the dementia floor she tells me "she is the leader of the gang". perhaps the home your mother is in could put her with others not so severe for part of the day. She also talks of going somewhere else after Xmas but not home which now she doesn't mention. This is the way she copes with leaving her home. Now this week she has got thrombophebitis in her swollen legs and I do not feel so guilty and know she is in the right place as the home got the doctor right away. She has also fallen out of bed and if she had been at home this would not have been seen so quickly. Wait a while to see how her health goes in the next month. Sooty
     
  7. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    Thanks Connie, I know, it is early days and we probably should wait. Initially I just panicked, thinking 'she doesn't like it, let's get her out of here', but actually she may even have been unwell when she said this. My m:)um has a problem with the sodium level in her blood dropping and doctors still not sure why. This week she's had a new blood test, and sure enough, her sodium level is pretty low, so that may explain why she was so anxious to begin with.

    And thanks Sooty, some good ideas there. I know what you mean about being glad your mum is where she is now that she is not so well. If my mum were at home now we would be struggling to know what to do. When someone insists they are dying every day you tend to get confused about when to ring the doctor/ambulance! At least in a residential care home setting they have a pretty good idea when someone isn't well, and in my mum's place they have a doctor who goes to do a surgery every week, plus the staff are monitoring her closely. When mum was at home before, with a part-time carer, it was a bit of a nightmare not knowing what to believe, and i have to say GPs were reluctant to come out to visit her.

    Mum not so desperate to leave now, or at least she doesn't go on about it in the same way. I managed to sew some nametapes into clothes today and was afraid it might provoke an angry reaction. But she just thought it was ridiculous because 'all her clothes are unique'! I guess the logic that everyone's clothes are unique but not for the poor person who sorts them escaped her.

    She is so very thin and frail now, does anyone know if this is common to dementia? She does eat quite normal portions of food!

    peppa
     
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Peppa

    I haven't even read the other posts, but I can identify at once with your situation. My mum didn't initially settle in her care home, she has now been there for nearly 4 months, and I wouldn't dream of moving her. The home is not perfect, but the staff are lovely, and manager is approachable, has dealt with a major problem I had, with professionalism and support. I thought of moving mum to another home, there was no room available at the time, but you have done that.

    My advice now, to you, is stick with it. My mum sounds similar to yours, she is not half as "bad" as most of the other residents, and I did worry about the mental state of the other residents, and we did reject one home because we felt they were too far past my mum, but it is absolutely amazing what goes on in the home. I was introduced today by my mum to Elsie, who appears to be totally out of it, constantly laughing at nothing. But mum has learnt that Elsie has three sons, and one who died at birth, worked for the local council as a secretary, two sons visit regularly and one she hasn't seen for years - he lives abroad. Mum has learnt all that in a fortnight. So I am now able to talk to this lady when I visit, she is delighted.

    Of course, it might all be rubbish and untrue, but it doesn't matter. Mum has a new friend Elsie, and as far as she is concerned she has three sons.

    Then there is Netta, who has no family, never been married, no children that we know of, but grew up in Glasgow. Netta can tell tales of Glasgow in the 1950s (grim!), and everyone is fascinated. Netta has AD, ask her what day it is, no idea, what year, no idea, who is the prime minister, no idea, but she can entertain the residents with tales of the Gorbals (I once went out with a lad who lived there!). And Netta is almost always asleep in the afternoon, she it is tempting to think she is not with it at all.

    Peppa, don't underestimate the value of the other residents to your mum. It all takes time. And also don't forget that the mix of residents changes as they move into hospital, more specialised care units, or sadly pass away.

    If you are happy with the home, stick with it. My experience is that it takes 4 months to be even "settled", and even then not necessarily "happy", settled is all we can expect. You know, all those people in care homes have pasts, histories, presents (and possibly futures). When I visit my mum now, I have a word with half a dozen other residents. They don't know me from Adam, but it makes their day. Some appear not to be conversational, but it isn't the case when you get to know them. There is far more conversation goes on than you imagine.

    Stick with it, and you might be pleasantly surprised - in 4months time.

    Love

    Margaret
     
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Peppa

    I must add, now I have read the other posts, that we went through the situation of considering would mum be okay at home, with support. Well, not a chance. We now know that she was so confused at home re day/night/breakfast/dinner/bedtime/morning and she is so much better in the home where there is routine. She is still getting up and dressed at 1 a.m., can't understand why she needs to wait so long for breakfast! But the point is she DOES have to wait, so eventually she seems to have got the message about breakfast times, and is now so much more settled in her routine. Not any more happy about it, but really it is doing her good. At least she gets three good meals a day, lots of cups of tea and coffe (she forgets when she has had them), mealtimes do become a sort of focus for her, i.e. life revolves around them. But at least she has that routine, and it has been good for her. She smiles now when I go to visit, instead of looking worried and scared, as she was when she was at home.

    Good luck, Peppa, it ain't easy, but we are all here for you.

    Margaret
     
  10. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    570
    N E England
    #10 Chrissyan, Nov 24, 2007
    Last edited: Nov 26, 2007
    To my limited experience I would almost certainly say you Mum's new friends stories are all perfectly true. In some cases as the short term memory diminishes the long term one heightens, this is definitely the case with my Dad, I have learnt more about his teens & early twenties in the last 6 months than I ever knew before. My son aged 14 says he loves listening to Grandpa's stories about the London blitz, his first job (in a hairbrush factory aged 14) etc etc. I would definitely say Elsie has three sons. It's what Elsie tells your Mum she did last week that will be rubbish.

    Peppa: Learning new places, new things is very difficult for people with dementia the less change the better, unless you have serious doubts about the care I would say leave her there.
     
  11. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    :)Margaret and Chrissyan, thank you so much for your support.

    I know I must sound awful when I talk about other residents being at a different stage of dementia, I appreciate that ultimately everyone will pass through these stages, and also that these are real people with real lives and stories to tell. I'd like to get to know some of them, but feel at the moment that resources need to be concentrated on my mum. Actually I think I will revise this next time I visit and try to talk to some of the others (this is usually complicated by having a 2 and a 4-year-old to keep an eye on!).

    In part I guess I'm echoing what mum is saying to me to explain why she has to get out. She claims it is terribly depressing and tells me to try and think what it must feel like for her. I do and it breaks my heart, but of course I don't have dementia so I don't really know what it feels like. She can at times hold 'normal' conversations with people, and one of her friends even announced to us a few weeks ago that she thought 'mum no longer had dementia'! I don't think she quite understands the disease.

    Although mum has only been in the new place less than 2 weeks she thinks it's been months. She thinks she'll have to stay in her armchair all night because she can't get undressed and to bed by herself. She claims it will be hit and miss whether the staff help her to bed. She refuses to believe she is being given her medication for constipation and claims she hasn't eaten in ages. I know this is not true, but I've realised I have to learn to bite my tongue and show more sympathy.

    I'm thinking of taking a tape-recorder to record my mum's stories from the past. she always said she had a book in her, and maybe now is the time to start really listening to the things she wanted to tell us. I'm hoping this will be a therapeutic exercise for her too. It may help her feel 'listened to' and it will be a wonderful thing to be able to pass on to her grandchildren. They need to know more about who she used to be to get the measure of her now. To this day my poor mum can't remember my 2-year-old's name as dementia started kicking in around the time she was born.

    Thanks everyone for being there. I take great comfort from reading the posts in the forum. It's good to know I'm not the only one and to realise sometimes that things aren't all that bad after all.

    peppa x
     

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