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Should I take things out of mum's hands??

Discussion in 'I care for a person with dementia' started by Lindy50, Jun 16, 2015.

  1. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Mum had a fall last week, not serious enough to warrant hospital admission, but she's been going downhill ever since. She's now doubly incontinent ( previously just the poo...), is eating and drinking very little and is too scared / demotivated to get up from her chair except to go to bed and get up. No way can she go to coffee in her sheltered housing, or anything similar.
    On Saturday I found her not wearing her alarm button ( not that she pressed it when she fell) and on Sunday she was not only not wearing her glasses, she was unaware of the fact.

    Life seems pretty grim for mum at the moment. She said yesterday that she just wants to lie down and die - and I can understand how she feels.

    The GP is prescribing anti-depressants and feels I should get her into some sort of respite care. Her response is to absolutely refuse. She pummels her fists pathetically and kind of screeches "I don't want anything to change....NO, I'm not going anywhere!!!"

    The question is, to what extent and when do I take the decision about respite care out of mum's hands??

    Not helped by the fact that I haven't yet found a vacancy, so it's all a bit hypothetical. Am ringing adult services when I've posted this, to try to get funding....maybe even a place lol .

    Any ideas out there would be gratefully received. thanks :)

    Lindy xx
     
  2. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Would she possibly accept the idea of either a 'holiday' or of a place where she can go to 'get back on her feet'? We told Mil she was being 'given' a holiday as a thank you for all the voluntary work she thinks she does at day care - by presenting it like that, she accepted it really well. If that hadn't worked, I was going to go down the route of her needing some help to get over that last infection/fall/illness and the doctor reccommended a place where she can recuperate and get well! I was also prepared to present the alternative that if she didn't go to 'some place' to recover, she might find herself in hospital - we really needed the break (as I'm sure you do - you must be so shattered dealing with your Poor Mum when she is like this) and I'm afraid I felt any means justified the end in that instance xxxxx
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Thanks Ann :) I'm afraid I've tried all these tactics, but she's still refusing to budge :(

    I agree with your last statement....at the end of the day, the means will justify the ends.....and it really is true that if she goes on like this, the likelihood is that she will fall again, and will end up in hospital. No- one wants that !

    Once I've found a place and some funding ( and I do remember your struggles with that) I think I need to be a lot more forceful .....

    Lindy xx
     
  4. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    I think you're right Lindy. Your Mum is scared, terrified, of things changing because she knows, at least on some level, that change can only mean she is deteriorating. It might be a struggle at first when she goes in to respite care and you might even go through a phase where she won't speak to you but that will just be a retaliation of fear.

    But you know all this anyway.

    I presume she wouldn't be convinced if you told her her current accommodation is relocating her temporarily because National Grid is doing some major work and the power to her property will be cut off intermittently for a period of up to 6 weeks? I've just had a letter this morning telling me exactly this for my address (plus that they will be digging up my driveway and will 'do their best to return any areas affected to as near to their original condition as their workmen are able:mad: - very unhappy Susannah today!) so it does happen!!!!
     
  5. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Think the time has come . . . you've no choice, really, xx
     
  6. its a struggle

    its a struggle Registered User

    #6 its a struggle, Jun 16, 2015
    Last edited: Jun 16, 2015
    Creative thinking

    Lindy ,

    so sorry to hear of your mum's deterioration and anxiety.

    Just a thought, but could Suzanna send you a copy of her utilities letter to 'doctor' for your mum's address????
     
  7. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Hi Lindy, just another thought. Does your Mum have a good relationship with her GP? When my Mum entered her care home, she was raging but accepted it when I told her that her GP wanted her to go in for a while, as she was poorly and would be better cared for there, than hospital. Mum is of the era whereby she sees GP's as God-like who must be obeyed! It worked in my favour and actually wasn't too far from the truth. Hope you can find a solution. My heart goes out to you. D x


    Sent from my iPhone using Talking Point
     
  8. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    You're right, Suzanna, mum is terrified :( That's why she will never take the decision herself, and we will almost certainly have to decide for her.
    Good idea about the National Grid but I don't think she'd buy it, unfortunately.....she's in sheltered housing so we'd have to make out everyone was moving....not that she ever sees anyone at the moment...so has no way of knowing....
     
  9. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Well if you want I'm sure between us we can forge a letter from National Grid, just pm me!

    Good idea of Demonica's about the GP. My Mum was in AWE of her GP and did whatever he said so I often got him to say what I wanted her to do (which was what he would have said anyway). Sadly he retired last year and the practice has gone right down hill since.
     
  10. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Thanks all :)

    Good idea about the GP, Demonica. However, he has already been out to see mum, and it was him who put it to her. He said he thought she should go now, ie yesterday, but she just went into a loop about how she couldn't understand what was going on around her, there is nothing wrong with her, how has this come up etc etc. He was very kind and in the end said we'd give her until Friday, and if she's no better, then she'll have to go to respite. Cue mum going into a loop again.....

    GP left advising me to get something sorted pronto. If only they hadn't shut the community (cottage) hospital, he could have admitted her there and it wouldn't be so directly up to me....

    But I guess that's the way of the world.......

    Thanks again everyone :)

    Lindy xx
     
  11. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Hello Lindy, I had exactly the same situation with my own Mum at the end of last year. She kept falling and stopped drinking so she would not have to go to the toilet. She never ate any of the food the carers made and lived in biscuits. She flooded the bathroom and kitchen and refused to move out into respite for the repair. The respite was all arranged but she would not budge. She was very depressed, talking of wanting to die etc etc. She basically made life hell for several months. I knew it was going to take a crisis to get her out of her house.

    To cut a long story short, the day I was going to let the workmen in to do the repairs I found her on the floor. She was unable to get up, hallucinating, etc so I dialled 999. She never went back home. After 6 weeks in hospital she moved to a care home.

    She is now a different woman. Happy, well fed and clean, and able to walk with a wheeled zimmer quite a distance. She is sociable and every visit is a nice experience. I never believed my Mum would ever accept a care home.

    Find a good place and talk to your GP. He might have to manufacture the crisis that gets her out of her house. Maybe a nurse can visit when the ambulance is booked and thay can take her out? Find a way as you need to help your Mum and help yourself.

    Sending you strength for what lies ahead. I hope it works for you too.
    Love Quilty
     
  12. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Oh, thank you Quilty :) I am sorry you had such a bad time, but it's good to hear that things did work out in the end.

    I think you're right about a crisis. Part of me wishes we'd called 999 last week when she fell....but we didn't, so we have to start where we are.

    Am now a woman on a mission to 1 Find a good place 2 Get funding 3 Co-ordinate with GP. I may be gone some time...;)

    Thank you so much for understanding.

    Lindy xx
     
  13. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Look for hugs, smiles, jokes etc rather than posh décor. The staff are the key thing not the place itself.

    When I found the care home I wanted one of the residents stroked the managers cheek and told her she loved her, that she was a lovely girl. The manager told the little lady she loved her too. It brought a tear to my eyes. It felt like a family.

    Best of luck.
    Love Quilty
     
  14. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,653
    Hampshire
    Hi Lindy - I agree with Quilty. Whilst somewhere needs to be clean, warm and safe, the attitude of the staff is as important. Mum was in a privately owned 17 bed CH with a good staff / resident ratio. I phoned for an informal chat before Mum was placed there and also spoke with some local district nurses - they tend to know where is a "good place".

    One good thing to ask about besides the ratio of staff is the turnover rate. The person I spoke to on the phone had been there since she was 16 and was now late 20's - she left last year to have a baby but is back part time as she missed it so much.

    Its useful to make a formal planned visit then, if you are interested, find a reason to "pop back" - saying you had forgotten to ask about xyz. A lot is clearer when you arrive unannounced but that is the same of any business.

    Good luck, I hope you can persuade your Mum without too much angst. Mum was always adamant she wouldn't go into Care and we did our best to keep to her wishes. With hindsight I wish we hadn't and she had gone in earlier when she would have had more benefit from the activities and supportive environment and been better able to establish relationships with the other residents. She did have good relationships with several of the staff and they were very caring and attentive to her.

    Celia
     
  15. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Sorry to hear about your Mum's deterioration, Lindy. Looks like our Mums aren't the same person after all! I hope you can find some way to get her into respite at least. If she won't do what the GP says, then you may have to use some subterfuge. Lots of TPers have manufactured a visit for afternoon tea, or lunch or something like that, then 'had to go and do a bit of shopping', leaving their caree there 'for a little while'. The backlash may be horrendous, but at least you will have got her there. Good luck. x
     
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Thanks everyone :)

    Some very good points here, and I truly believe that mum would be better off in residential care. However....I have come up against some obstacles today. I had a long (30 min) telephone discussion with the duty officer at our local Adult Services Team, and they confirmed the following:

    -- Not surprisingly, they will not arrange respite / residential care against mum's wishes - unless they she is assessed by her GP not to have capacity to make this decision.

    -- They will in any case try all options to keep her at home, because it's cheaper for them. Theoretically we could try 4 visits a day, for example....

    -- They agree she is not well enough to go to day care etc, so it's just a case of maintaining her at home ....never mind the social isolation and loneliness - grrrr :(

    -- IF they agreed to fund residential care, the rate they pay is £473 per week. Our local home, the one I like, charges approx £750 pw....

    -- No-one will be available to carry out mum's needs assessment until about the second week in July - we can't do anything much until that's happened

    The only positive outcome was that they will refer mum to the Falls Service and she may get a falls sensor, but will have to pay for it. I do think that's a good idea in the short term.

    I am typing this on the mobile site, and if I were not, I promise you there would be a whole lot of angry emoticons in this post!!! What did someone say? "I warn you not to get old, and not to get sick"....I am so angry :( Mum has looked after everyone else all her life, and now she's being treated like a sick battery hen....

    Will keep going and keep you posted.

    Thanks again.

    Lindy xx
     
  17. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Lindy, I don't think I have anything useful to say, but did want to say, I've been reading your thread, I really feel for your situation, and I hope something--whatever that is--works out for you and your mother.

    I'm thinking maybe your best bet right now is to get the GP on your team?

    And I'm wondering if you might go ahead and evaluate possible care homes, just in case?

    I wish I had answers, and not just questions for you...
     
  18. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Thank you Amy, you sound so understanding :)

    I think this is going to be a difficult road.....I am hoping to speak to the GP again on Thursday. Will go and see him by myself if I can get an appointment.

    I expect we'll achieve something in the end, but I am so angry that in the meantime, my lovely mum, a sick old lady with dementia, seems to be at the top of no-one's priority list but mine :(

    Thanks again.

    Lindy xx
     
  19. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    I would be just as frustrated as you Lindy. We all want our loved ones to be at the top of the priority list. Sadly I would be pretty sure that, as difficult as things are for your mum and you, there will be people in your local area whose situation is much worse and who have nobody to help them.

    In mum's case she kept saying vehemently how miserable she was at home, and she wanted to move nearer us (60 mile away). Her CPN was satisfied that she understood that meant moving to a care home so we didn't have to worry about the capacity issue.

    I'm not surprised that they would want to try care visits first, even though 4 carer visits probably adds up to less than you already do for your mum now. After her last fall, mum was completely immobile, unable to stand or weight bear and needed two carers to support her. If I wanted it, they would have put together a care plan on the basis of 4 visits per day at home and 1 night-time check. So she would have simply have had to sit where she was put with nothing to do for hours at a time. I have been so grateful that her savings meant we could go directly to residential care, though I know that's no help to you.

    I hope that your mum's GP can help move things forward for you.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,336
    Female
    South coast
    Oh Lindy, I do feel for you. I remember this stage, when mum needed care, but was refusing it - I was tearing my hair out with worry.
    Unfortunately, I think you might have to go through Adult Services' hoops and start off with carers in 4 times a day. :(
    With my mum it eventually got resolved when she went into hospital for a TIA and it became obvious that she could not cope at home. She was assessed in the hospital for capacity and found to have lost it, so she went into a care home from there.
    Hang on in there - it will get sorted, but I honestly think this is the worst time.
     

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