1. Nick

    Nick Registered User

    Nov 23, 2005
    I'm a first timer here.

    I'm not a full time carer for my mum who has suffered from this dreadful condition for about 5 years. She lives alone but has her best friend to look after her every day. He is in his 80's. Caring for my mum has been his life over this period and this has gradually taking its toll on him. He is dog tired and is finally admitting that he finds it difficult to cope as my mum becomes less and less capable. She has Social Services carers to come in twice a day to help her dress and wash. My sister and I keep in touch with both of them daily and visit as often as possible but we both live hours away.

    We were always told that by the time she reached the point of having to go into 24 hour care, she would be so unaware of what was going on that this, her greatest fear, would mean nothing to her.

    Instead, while night time wandering in the street is forcing the issue, she is still intensely resistant to - and scared stiff about - being 'put away'. The professionals tell us that we must think about what she needs and not what she wants. We cannot find night time care, the only other safe option.

    Although we always knew this time would come, it is, without doubt, the most traumatic time yet and I just feel so desperately sorry for her. I will stay with her tonight but I somehow know this wil be the last time I see her in her own home.

    Does anybody have any clue how we can get through this transition in a way that will make it easy for her?
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Nick and welcome to TP

    yes it is a most horrible thing to be faced with.

    First of all, is there a home of the right kind [ie secure, if she wanders] that is local that has space?

    What is the funding situation?

    Has she been assessed for medication and care needs yet?

    No point in worrying her until you know these things because the worrying may be unnecessary...yet.

    Then, when there is somewhere that she can go, there is not much you can do but bite the bullet.

    .....and learn to lie.

    Tell her she is going on holiday for a week, or that she needs a check up in a nice hospital close by, or that her place needs to be decorated so she will have to move out for a while.

    You then just need to manage each visit .....

    It is not going to be easy, but just tell yourselves that you are doing what is best for her.

    Good luck!
  3. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Nick

    So many of us understand how you feel at the moment, Brucie's right about all the practical things that have to be done and they take time and energy to deal with.

    Emotionally it is an awful time for you too, especially as your Mum has a dread of going anywhere.

    My Mum, now in her 6th year of AD, always had a horror of being "locked up", so when we had to take her to emergency respite last year when Dad suffered a massive stroke, we got round that by saying we had to go to work and she would be staying with a lady we knew.

    It took a few days for her to settle, but when we visited again after Dad's death, she was fine about being there. Since then we have had to move her to a secure EMI home as she, like your Mum, was prone to wandering and we needed her to be totally safe.

    This time we used the "decorating your room" line, she settled almost immediately and has been there ever since.

    So, for her, it was relatively easy, but for us, along with losing Dad, it was the hardest thing we ever had to do.

    Good Luck with the choice of home and the move.

  4. Dave W

    Dave W Registered User

    Jul 3, 2005
    Good luck, and keep posting

    I'm a handful of weeks further down this same path (the main difference being that my mother went into hospital 5 weeks ago, nightwandering was being compounded by paranoid delusions and seriously confused and forgetful episodes, and residential care is the current recommendation from the hospital team (psychiatric and occupational therapists)), so I hope I can say something helpful as well as expressing sympathy.

    As Bruce has asked, what is that situation regarding involving the GP, consultants and so on? Presumably she was assessed at some stage when Soc Servs where engaged? What was it like getting social services involved - how did she respond? As new agencies become involved, share this information with them - it can help them to approach and handle your mother more appropriately in a sheer 'what behaviours antagonise or irritate her least' sense. Personal interactions can be helped with understanding of preferences.

    Has your Mum had the suggestion that "now is the time" actually made to her, either by you and your sister, or by the professionals? What are her preconceptions of 'homes' (hugely negative, presumably?). Is there anything you can do to challenge these and make her less adamant? (How aware or accepting is she of her condition - as this is an issue with mine.)

    Ask the professionals to help you to address these issues: by supporting you, they help you to support your Mum. Get emotional support from your own friends too (it turns out I have a number who have experienced dementia within their own families). It can help you feel a lot less lonely in facing up to these challenges: it has certainly helped me.

    And keep posting - I'm certainly realising what a helpful and supportive community TP can be.

  5. Nick

    Nick Registered User

    Nov 23, 2005
    Thanks for the supportive words and practical advice everyone. Not sure we'll be calling in the phantom decorators any time soon but, having spent the day and night with mum, I know that we have no choice but to make this decision now.

    We have found a place where the care seems to be good and the people kind. Having seen a few, this seems to be as much as we can hope for. No home will ever be perfect will it? All the practical wheels are in motion now.

    Her anxiety stems from when she nursed her own mother through dementia, eventually visiting her in a (good) home during her final months. Despite her diminishing grasp of what's going on around her, this fear of ending her days among 'other people who are so ill' has stayed with her since she was first diagnosed. We have to trust the staff to help her through this disturbing period and I'm telling myself that she hated the thought of anyone coming in to help her at first but she gradually embraced that idea and we can only hope that this next stage will be similar.

    I cannot join discussions very frequently but will check from time to time as I've found this helpful already.

    Thanks again.
  6. Dave W

    Dave W Registered User

    Jul 3, 2005
    Thanks and good luck once more, Nick


    thanks for posting again. I'm glad that practical steps are taking shape now: we might not like them and where they lead. but things would be harder if they were not in place. And your post is a comfort to me too: I think my own Mum's fear stems from a relative who was 'put away' when my Mum was very young, and she possibly/probably has some Dickensian vision in her head.

    I'm now waiting for a large selection of home brochures to arrive so I can try to work with the hospital/SS staff to find somewhere she'll initially accept at least a trial visit too, and have to kee finding hope from new sources. (Having said which, she went into hospital voluntarily when we feared she would need to be sectioned; she learned to quite like most of the carers, although - in the abstract - she was opposed to the idea. Preconceptions vs reality, time after time.)

    Let's wish each other luck for the next steps of our respective jounrneys.
  7. Sweetie

    Sweetie Registered User

    Nov 27, 2005
    North Yorkshire
    First visit

    Hi, I've also just joined so please bear with me. Just had my first visit today to see my mother who has been living on her own with dementia but without any family close by. She has deteriorated over past months and I have been travelling backwards and forwards trying to support where I can. Also had carers, social services and CPN involvement.

    We all agreed that the stage had been reached where she wasn't safe to be on her own and needed 24 hour care. Have now found a good (I think!) EMI home in my home town and she moved in on Friday. As I say, just had my first visit and she had packed her bag and lots of ornaments we had put in her room were in her toilet bag ready for me to take her home. Managed to spend an hour avoiding the subjectt, but she was up on her feet following when I said I had to go and told everyone the doctor had said she could go home and nothing wrong with her so she was going home. Kept asking about her house and keys. If you didn't know her you would think that she was totally OK and shouldn't be there.

    A couple of staff were reassuring her and explaining she wasn't going home but she got quite aggitated and said she wasn't staying longer than a week and I had to take her home.

    Help - I don't know whether this will get better or worse. How do others cope?

    Thanks for any suggestions.
  8. connie

    connie Registered User

    Mar 7, 2004

    Hi Sweetie, welcome to T.P. You have certainly come to the right place for advice and support. As my circumstances do not mirror yours I can be of no help on this occasion, but I am sure you will get practical help soon. Connie
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I think that is a key point. She has accepted that she is in there for a week.

    One of the things about being in a home is that time starts to merge into itself, and people lose track [even when dementia isn't involved - that's why there is the classic tallying of days on the wall in prison movies].

    You may be able to make her week a rolling one. Each week, let her think that 'next week' is the one, until one time she doesn't ask. Sounds awfully cruel, but it isn't in fact. You are just makeing sure she is safe.

    Of course it isn't easy on you. It often isn't when you are doing the best for someone. You cope by repeating that to yourself and taking things day by day.
  10. Dave W

    Dave W Registered User

    Jul 3, 2005
    Seconding Brucie

    Just to echo Brucie's point, really, although I'm one step behing on this journey.

    Mum's been in hospital for 5 weeks, but after three weeks was already saying she's been there 'nearly two years now'. In her case, as her sense of time has been collapsing over the last few months (past and present are a haphazard shifting jumble), her condition is probably responsible for a lot of this, although there is little sense of time or date to grap (as Bruce has said).

    It is hard - very hard - to keep telling yourself you're doing the right thing, and some visits will be very draining. But some won't: I had a lovely 30 min chat with Mum yesterday about dancing, all the accidents I had as a kid (I was forever covered in plasters), and lots of random little nuggets, when I was expecting a really stressful occasion.

    As my partner keeps telling me (to remind me, as he knows I know), she's safe where she is, the nursing staff are very caring, and look at the alternative (the thought of her trying to cope alone somewhere is truly terrifying). What she sometimes wants (to go home) is most certainly not what she needs, and what someone really needs is the one that has to be met first.

    The staff will be aware (how could they not be?), and will do whatever they can to help her feel settled. Tell them little things she likes that they can do to/for/with her: the more moments of 'happiness' she gets, the more it may help her.
  11. EllieS

    EllieS Registered User

    Aug 23, 2005

    Horrible isn't the word - GUILT is the word - Guilty because I'm not able to have Mum live with me so she's got to spend her life in a "locked" environment - yes, with other people who are mostly very much worse than she is.

    If you met my Mum Sweetie, you would also think why on earth is she in this environment.

    When I'm with her she's normal (pretty much ) her short term memory is shot though. Because she comes from a large family (12) she's never really needed to make friends so although she's NEVER been unfriendly she does not naturally talk to people she doesn't know - and she doesn't know any of the other residents even though she's sitting with them all day every day! So, she's unable to help her own loneliness.

    IF ONLY IF ONLY IF ONLY : the other residents were able to talk to her; or the staff made it more possible for them to sit with them in small groups for short times each day - because alot of the people CAN communicate but ...but..... but.....

    It all comes down to one thing you can only find the best place and it will NOT be anything like perfect and we will always be wanting more for our loved ones BUT I just do not have the time to get up to the home each day and sit on shoulders to encourage/help things to improve.

    So, I do my best - it's not good enough - but it's what I do and it s definitely better than any alternative that anyone has put to me (not that there's anyone else who cares enough to make any positive contribution to all of this!)

    I'd hate to be in Mum's shoes - I feel useless, helpless and a rubbish daughter - but i AM NOT!

    All these "wounds" that keep being opened - can't be healthy!

    Ramble, ramble, ramble.



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