A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    @Palerider - I know that you want to respect your mums wishes, but, honestly, there comes a time when you have to change from enabling their wants, to enforcing their needs. It is hard to change mindset when it is a parent and we have spent our whole lives respecting their desires, but I think you have reached this point with your mum.
    Her needs take precedence.
     
  2. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    364
    @canary is speaking wisely as always. I'm still getting my head round the fact that mum went straight from being in her own flat without any help coming in to a care home. The home keep on saying she's in the right place and it is true. I'd spent years respecting mum's wishes regarding extra help, but it got to the stage where she was at risk to herself and to others, and I had to act.
    I hope you find yourself at peace with the decision when it's made. Don't forget to look after yourself too.
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    Hi Canary and Sarasa

    Yes I think the time is here. Having seen the behaviour this morning (for myself) and the changes in the last week or so coupled with her abscence of insight (worse than before) this situation won't be manageable as it has been. I have been willing to overlook some things, but I can't overlook this situation as it is now.

    I've quickly spoken to my brother and let him know what's happening, not that he's coping with this but he needs to be told. I can't do anything now until Tuesday, so its make the most of today and tomorrow with mum and then it will be down to the SW etc to plan from there. I have a full week at work and am unlikely to have more time off. I'm wondering if this is a good thing, as mums over dependance on me might make it harder to put her into respite if I'm present -I'm not sure yet.
     
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    851
    I wonder if a negative view of care homes in the public mind doesn't help. I'd never had anything to do with care homes other than when my mother-in-law had to go into care. In fact when she went last year, it was the best decision we made for us as a family and her. It was an emergency situation, which in hindsight ,we could have avoided by organising it earlier. My husband was reluctant to make that decision, very much in denial until my mother-in-law was in hospital and we then had no choice. I wish we had looked at homes earlier,but in the end,mother-in-law was well looked after in the home we chose. As others have said, your mother needs a whole team looking after her . Your needs are important too.
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    @Rosettastone57

    See my comments at #203

    You have raised and interesting point here. In the job I do now I see the other side of care home clients admitted to hospital and it frightens me. This isn't because the carers don't care in some of these homes, its because there is no money and they are short staffed. I won't disclose the issues I've come across, but I can't say hand on heart that I would place my mum in some of them and I am not happy with the situation here at home after today, but there is no other option. I just hope there are places where I have put mums name down.
     
  6. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    851
    @Palerider My mother-in-law was self-funding and would have been for a number of years until she passed away last year. I appreciate that we were fortunate that that gave us quite a few choices for care homes but even then ,because we were in an emergency situation we still had difficulty finding homes with vacancies. It's not an easy time and it was a steep learning curve
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    @Rosettastone57 We are not in an emergency situation, at no time have we been -just to make that clear. I think you clearly have an idea in your head that things have fallen apart here tragically -I can assure you and others they have not. The issue is that mum cannot continue like this not just for her sake but also my own sake (heart problems due to stress) which is why mums SW has intervened -on the 2nd May I was in resus with an acute cardiac episode.

    Over this time mum has got worse (and also wandered) and because I have raised concerns and requested an assessment, SS have intervened. This process has been complicated by mums instructions to her solicitor which have also now been taken into account (something I wasn't fully aware of). As I have said now a few times I don't have complete decision making power here, even if I wanted to. If I had I would have made the decision a week ago when I was ready to.

    As for the care homes I can do nothing more than put mums name down in anticiaption of the time when she will need a home. I have to wait now till Tuesday as this is not an emergency or crisis situation and in any event as I have said it will be a consensus decision -self funding or not.
     
  8. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    851
    @Palerider I was talking about my own situation last year as an emergency, not yours.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    I have never said that your mum was in a crisis situation. I have only said that I thought she was at the stage of needing a care home - and I stand by those comments.
    TBH, though - I do feel that a crisis is not too far off
     
  10. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    @Rosettastone57 lets move on. I am not in the best place at the moment.
     
  11. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    Its fine I wasn't refering to you Canary. I think I am going to leave this now, because what I don't need is to be trolled on this forum -I have had enough over the last several weeks to last me a lifetime.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    Im sorry @Palerider this life isnt easy is it?
    I hope the SW is helpful on Tuesday.
    ((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    I am sure it will be fine Canary and thank you and everyone else albeit one for your helpful thoughts and comments -it is all greatly appreciated.

    I am taking mum out tonight and giving this forum a break now. Night everyone have a good weekend :)
     
  14. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    #214 Palerider, Jun 25, 2019
    Last edited: Jun 25, 2019
    Well Tuesday is here and almost gone and a re-assessment has been requested by mums SW by the psychiatrist. I have been reminding myself of how these things can play out and read the article 'Taking wishes and feelings seriously: the views of people lacking capacity in Court of Protection decision-making' link below:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3996533/pdf/rjfs36_59.pdf

    This is a good read for anyone interested in how decision making and lack of capacity can be and is determined in law.

    GIven the circumstances I may have to accept that mum for the time being is to remain at home, but if that is the case then the SS will have to work out how to care for mum when she is on her own all day until I return.

    This is becoming more complicated than I thought it would. But I will carry on, until I can't anyore.

    Edited: 23:35 insert correct wording
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    A consensus hasn't been reached on placing mum into care. The memory team are going to come out to assess mum at home, but that will take a few weeks to organise. Mums GP has been very good at seeing how things are and assessing mums capacity as well as her wishes and feelings about current carers coming in and also asking me how I feel about the situation. Mum has been clear that she does not want carers nor is she to go into a care home. The general feeling is that it would distress mum to place her into care as she is at the moment. The team (GP, psychiatrist and SW) will continue to review the situation on a regualr basis and update mums solicitor if the situation deteriorates and use best interests when they decide she can't stay home anymore. I will continue but have made my limits clear as things will change again over the next 3-6 months.

    Mums SW is also trying to make this so that I am not left isolated, which I appreciate, but I don't see what more can be done at the moment in terms of help for me.

    And thats it, after getting so anxious and wound up about everything and worrying about mum. I need to take a step back now. All of this will blow up again, and I will have to go through the emotions and stress all over again, its a never ending journey -well it seems that way
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    Today I managed to catch mums solicitor and talk to him via telephone. I wanted to hear first hand what mums concerns were when she gave her instructions on LPA's and other matters such as why she decided against LPA for health and welfare. He was the same solicitor who dealt with mums matters originally and specialises in matters to do with the Court of Protection.

    Mum was basically clear that only she would determine what happened to her, despite him advising to think carefully about not having an LPA for health and welfare. At the time she had capacity (several years ago) and so her wishes were noted. Mum was clear in her solicitors meeting that only she would decide what happened to her and where she lived and he said she was 'crystal clear' about it.

    I asked if there would be an objection if I applied for LPA on health and welfare now. His response was that although he understands my situation, he has been instructed to act on mums behalf, taking into account her express wishes on the matter of determining where she lives and how she lives. Therefore, they would contest my application as she had made clear when she had capacity that no one was to be afforded LPA for health and welfare.

    I then asked about any issues there were in the current scheme of things, he basicaly said that there weren't any serious issues, but they want to be satisfied that if mum is to be moved to a care home it is with no contention in her best interests.

    This didn't surprise me when I put the phone down, mum had always believed in the right to self determinism, and she has certainly made it difficult to go against her wishes. I don't understand why she and dad had never told me all of this before -maybe they thought it would never happen. I will never know now, but putting myself in her shoes I can see her reasons and also this is mum in who she really is (or should I say was) -her own person.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    Your mum never expected to get dementia did she? (sigh)

    If it is of any consolation, Court of protection very seldom grant H&W deputyship - only in extreme circumstances, so you would almost certainly not have got it even if your mum had not objected.

    Do take your step back. You cant do everything and dont make yourself ill trying.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West

    Yes I think she never realised she would end up where she is, but I can't undo it now plus I don't have the savings left to pay for an application only to loose.

    I am going to take a step back, I need to save for a new place to live so I may do extra shifts and I need a holiday, something I've not had in 4 years. I need to start rebuilding my life and planning ahead for when mum does need a CH.
     
  19. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    364
    The whole thing is a minefield isn't it. I'm very aware that I've very much gone against my mother's wishes by moving her to a care home. It was something she never wanted to happen, and always said and still says that she wants to live independently. She agreed to us selling her flat thinking she was moving to a similar flat near my brothers, when in fact the places we showed her were supported living ones (something she didn't twig). When we realised that wouldn't be enough, a care home was the only option. I keep on telling mum that it is temporary while we sort out somewhere near my brothers, and she keeps on telling me she now wants to move to a house because then she won't have any neighbour problems. She couldn't cope with a small flat and all the neighbour problems were the disease confusing her, a house would be no different.
    Hope you manage to start making those small steps towards a life for yourself.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    Yes @Palerider and @Sarasa my mum was another one who fought tooth and nail against moving into a care home and she tried to make me promise that I would never "put her in one of those homes". I never made that promise and instead I promised to do my very best to do the very best for her.

    She moved into a care home, unexpectedly thrived there and I still feel I have kept my promise.
    Dementia changes everything.
     

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