Can't bring myself to admit defeat and sign the care home contract

Discussion in 'Welcome and how to use Dementia Talking Point' started by count2ten, Jan 12, 2015.

  1. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    I can't believe this is happening, I never wanted my mother to end up in a care home but after locking herself out of the house at 4 am, nearly dying of hypothermia it seems I have to admit defeat and probably can't keep her safe in her own home anymore. She was getting more confused and anxious for weeks and I knew she must have some sort of infection because you just know your own mother don't you. I pestered the GP constantly tp investigate but just got the usual "it's the dementia, you have to expect this" answer, they just couldn;t be bothered and told me the urine samples were clear and stop being a neurotic daughter and go away. It all ended up with her locking herself out, (she never left the house alone) and was only save from freezing to death by a neighbour, and finally it was discovered she had sepsis. (It would have been so much cheaper and less stress all round, specially for my mother, if the GP had just ordered the proper tests in the first place - NHS take note) .

    They played the usual musical beds with her in hospital until she was completely disorientated, off her legs, incontinent and deeply depressed, then gave her a handful of antibiotics and sent her on her way. She was too unwell to go home, even with her care package, so I had to move her into a private care home overnight (the only one offered by social services was NOT acceptable) , but then this one didn't look after her properly and I was tearing my hair out with worry, then moved her to another private home which has managed to get her back on her feet and has given me some peace of mind. But she is now so confused that she needs 24 hour supervision so I have been forced into having to make a decision about her future, but I can't stop beating myself up thinking could I have done anything differently, should I move her in with me or get some live-in care so she can return home, even though she hasn't known where "home" is for a long time now.

    Everyone keeps telling me I have done my best to keep her at home for so long, in spite of all the battles with social services, care agencies, district nurses, psychiatrists et al (you all know the drill). This is apparently good for her and that I have to get back to work and I need my life back etc, but I hate seeing my mother become more institutionalised each day in this care home, even though they are very caring and kind and try to keep them occupied, well fed and watered. But it's not her home is it. And I can't help feeling that I or society have failed somewhere.
     
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Hi, neither you, nor society have failed your Mum, but it may be that the Dementia has "won". If she is safe cared for and settled in the Care Home ( and of course if you can afford it) I would let her stay a bit longer and see how it goes. Has Mum had a Care Needs Assessment yet from her local Social Services?
     
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    Hi count2ten
    As cragmaid says you were always going to lose, with AZ there is only ever one winner in this game and that's the disease. You have to do what's best for her and it sounds like that is a carehome. Now you have to face the next battle, guilt, but this is one you can win, you did as much as you could for as long as you could, there is absolutely nothing for you to feel guilty about, you're already a winner in my eyes.
    K
     
  4. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Thank you so much, it helps to hear these things from people who really know what you're going through. Craigmaid, yes that's the thing I have battled with for so long, hoping it was all going to go away and the doctors and everyone would tell me it was just a phase she was going through but knowing deep down this was one battle I couldn't win and feeling so out of control. Kevinl, in my heart of hearts I know she is in the best place I could find for her, I suppose I will eventually accept this but at the moment I feel I am going through a bereavement, knowing I will never see her pottering about n her house again, or cook for her, do her shopping, read the papers together. I keep crying and waking up through the night and I can';t understand it because we never had a very good relationship but I feel such a sense of loss - I've handed her over to strangers and she will have to develop a relationship with them and I have to let go.
     
  5. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,247
    Female
    England
    You can and will still be involved in your Mother's care. Shopping, you will need to keep her supplied with toiletries and any treats you know she likes and of course her clothes. You can still sit and read with her and when she can no longer read you can read to her.

    You will be watching to make sure everything is as it should be and there to speak up for your Mother if you feel it is no as it should be. Caring never stops, it's just a different pattern.

    Your Mother is going to need you as well as the care staff. You will be doing the nice part of caring, the staff are there to do all the rest, you will be the icing on the cake for your Mother.

    As others have already said dementia is a battle that no one can win and no one should feel guilty when we have done the best we can.
     
  6. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,353
    Kent
    #6 love.dad.but.., Jan 13, 2015
    Last edited: Jan 13, 2015
    I have had and as others will also say continue to have all these same feelings as you. It isn't admitting defeat it is recognising that the person needs full expert care.Mum died suddenly at home dad couldn't be left as would have wandered not eaten etc. I did live in care at his home for 8 mths tried unsuccessfully two different live in care agencies and he has now been in a care home 6 mths. I was desperate to do anything to keep him in his home as his declined mentally but no matter what I wished and hoped for inevitably the time came when he needed 24/7 expertise. You and I haven't failed for some sadly care home environment to keep them safe and looked after is in their best interests....we haven't failed them we were just delaying the inevitable and looking after them to the best of our ability. I visit dad every other day I still do things for him am still involved in his care just in a different way but am still fully involved. Yes...in an ideal dementia aware world we should be able to keep loved ones in their own homes but the social care structure for those who eventually need 24/7 care and expertise in the community even for those like dad who are completely self funding doesn't exist for many atm
    We can pray in years to come it does. I wish you well....the guilt lessens because we know they are safe and cared for but doesn't go away. It was hard settling dad in over months but he has reached a degree of acceptance.
     
  7. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    #7 Solihull, Jan 13, 2015
    Last edited: Jan 13, 2015
    Hi Count2ten, you are travelling the road which many of us have gone before. You can only do your best, what happens if you are ill? We are not responsible for another person's life just their best interests when they reach this stage. I never thought I would accept the fact that my mum was in a care home but four months down the line I cannot imagine how cruel it would have been to have left her to her own bewildered devices. She is well fed, gained weight, clean & safe. I am an only child (63) so had to make this decision on my own. I feel better in myself than I have for years & mum has her dignity back. I hope you can find peace for yourself and your Mum.
    Take care.
    Sue
     
  8. VickyG

    VickyG Registered User

    Feb 6, 2013
    327
    Birmingham
    Hi

    I'd just like to say how I feel for you, been there, done that. Got the tee shirt. And it's not nice :(
    As the posters on here have already said, there comes a point where the person's best interests come first. Safety and well being ( as much as possible - nowhere is faultless or indeed perfect ) has to take priority. And yes, it's really hard to have to see someone who you love go into care. What you have to remember is, people do adapt, (or maybe deteriorate) to a point where they just settle in to their new envoironment.
    You will still be caring, just different caring.

    And i'd also like to say, you have not failed your Mum, you have just been doing the best for her and now maybe the time has come for someone else to share the load.

    Take care now x
     
  9. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Can't cope with the thought it's a permanent move ...

    Only been a few weeks and having such a problem getting used to her not being in her own home - every time I go there to pick something up for her or do some cleaning etc, I keep finding things she's written down, newspaper and magazine cuttings, old photos I've never seen before, notebooks with half written shopping lists and letters, heartbreaking words written to her dead siblings, stamps from old envelopes, every birthday and xmas card made by her grandchildren, clothes she made and knitted from 40, 50, 60 odd years ago! That was a truly make-do-and-mend generation, nothing got thrown away, everything could be useful and kept neatly packaged and folder and tucked away at the back of a drawer., All the jewellery given to her over the years which was always meticulously boxed away. But heartbreaking to see all these things have been re-arranged where she began to constantly take things out and put back in the "wrong" place , or fallen onto the floor and kicked under a chair (how many of her earrings and other bits have been carelessly hoovered up by the different carers she had intruding into her privacy?). I hated her having to have these "strangers" knocking at her door, people she would never have entertained before her illness, each one preparing her food and drinks in a different way from the last one, barging around her home, re-arranging her cupboards and all the familiar bits and pieces in an attempt to tidy the house but causing more confusion for her and making her feel she no longer knew where she was living. I feel like I never really knew my mother, and now I will never get a chance to.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,397
    Female
    South coast
    Mum is now in a care home and yes, it is awful going into her home now she isnt there. I did the same as you count2ten, and it was painful seeing her handwritten notes and finding all the stuff that she had squirreled away.
    If its any comfort, mum refused all careworkers (which is one of the reasons she had to go into residential care), but everything was in the wrong place - she had obviously rearranged cupboards and things herself and I found lots of stuff in truly bizarre places. She also did not recognise her own home. I think it is just the progression of the dementia.
     
  11. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Hi Canary, my mother hasn't recognised her own home for a long time either - not sure if it was helped by the succession of new carers coming and going all the time, all with a different (or indifferent) approach to doing things for her - she resisted them all the way though and still managed to get herself her morning cuppa (sometimes made in the kettle but it tasted ok to her), would give herself a strip wash and get her clothes on , usually took her till lunchtime and was exhausted afterwards - but always very fussy about washing herself properly and smelling nicely. She often had odd clothes on (could have been to do with her dodgy eyesight) but on some days she would be dressed to the nines, matching colours, jewellery , bit of make up , even brushed her hair. But it would come in waves, so unpredictable, and so hard to keep up with.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,397
    Female
    South coast
    I agree, its the unpredictability that makes it hardest. Mum no longer recognises me most of the time, but even so will sometimes surprise me by knowing who I am and even remember my children.

    By the time she had to leave her home she could not even remember how to make a cup of tea and was suffering from dehydration. She was also not eating. She too used to wear odd things and often used to wear multiple items - frequently several pairs of knickers :eek:. Once I found her wearing 2 vests and 4 tee-shirts!
     
  13. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    Yes I recognise all the things you are all saying, now mom is in care & the house is being sold I have sorted hundreds of pairs of odd earrings, hand knitted jumpers, photos, shopping lists, old birthday & Christmas cards. It was heartbreaking but you get used to it ands the practical side kicks in. Great satisfaction when it's done & 5 months on mom has not mentioned any of the stuff at all. It is now all about mom having dignity back and being cared for. Xx
     
  14. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    #14 count2ten, Jan 23, 2015
    Last edited: Jan 23, 2015
    Hi Solihull, this is the bit I am not going to cope with well , but you've given me some hope I can get through this in the weeks and months to come. Little things keep starting me off - just seeing the fridge now empty and none of her usual stuff in it - the vase on the table with no flowers (always got her a new bunch every week) , her bed stripped where I washed all the bedding and was waiting to re-make it when she came back. I thought my mother would always come back.

    I can relate to the hand knitted jumpers and cardi's, my mum was a fantastic knitter - she also emerged as a brilliant artist so we have beautiful paintings around her house too. What's everyone's thoughts about putting together one those large photo collage frames to hang on her wall at the CH - would this provoke happy thoughts or make her sad or just confuse her? She seems to be separating from her "old" life very quickly , a lot more relaxed, enjoying the activities, doing things she hasn;t done for year. We are starting to see the person she was as a young adult, gregarious and having a laugh with her peers. Someone recently told me that people with dementia respond to how something makes them feel rather than what is said to them, and I think because she is now feeling safe probably for the first time in years her personality is starting to emerge now she's not weighed down with all her anxieties and phobias. I am so please she has found this peace of mind at last.
     
  15. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    This is such a positive post. Thank you for sharing it. Such a contrast to what you wrote less than two weeks ago

    My MIL still has capacity so we've been able to talk to her about her feelings regarding her move to her new home. She told me on my last visit that the move has given her "a new lease of life". At the ripe old age of 88, what more could you wish for her than that?

    I'm very sceptical when 'retaining their independence' is trotted out. More often than not it's actually a euphemism for 'struggling to cope'.
     
  16. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Thank Chemmy for those wise words - I needed to hear about the "struggling to cope" - visited my mother yesterday and she was not at all happy this time - wanted to know why she was there and why nobody had told her about it all - I know this is the dementia, she doesn't have capacity anymore , and she would definitely not be safe living on her own , but it was enough to get me wobbling and doubting my decision again. I must try and remain positive about this, there will be good and bad days and I suppose this is yet another lesson I have to learn.
     
  17. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    6 weeks and counting...

    Haven't posted for a while, been catching up a bit on bits of my life that have been neglected for such a long time (mainly sleep !) , and also sorting out her finances and clearing/cleaning her house etc. Things still a bit up in the air regarding CH and the inevitable guilt about moving her there, but having been able to stand back now and really look at the situation we had both struggled with for so long it would be bordering on abuse if she went home now - even with 24 hour care it wouldn't work, she would be so agitated and confused about having carers coming and going all the time, apart from the stress of trying to manage that situation again. Physically she has improved because of the level of care she has at the home, but I can't believe how much she has deteriorated mentally in such a short time. Is this the middle stages of dementia? She asks to go home but this is where she lived with with her parents - it's as if the last 70 years have completely disappeared - she's always asking if her mum is ok and wants to phone her to have a chat. It's so sad (for us ) to see her like this. But the staff are very good at distracting her and getting her involved in other things so it passes out of her mind very quickly. On a practical note, the money has now run out so hoping SS will take over the funding until we can sell her house - at least she is blissfully unaware how much this "free convalescent home" is costing her.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.