I don't want to be a carer any more

Discussion in 'I have a partner with dementia' started by maryjoan, Nov 3, 2019.

  1. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    so sad you feel this way @maryjoan it is added stress on top of the caring. ..i feel for you and your situation...I have my ex husband living with me for past 6 years..divorced 20+ years! I am sole carer .....I wonder how that would be assessed!! I am more than willing to go to my limit, and I cope because have set my limits, and made them known to family. Once that's reached they know I am done. But the more I read that others are going through the harder it seems it might be when the time comes. But the difference being I will walk away. It must be so hard for those of you caring for your partner/parent who cant walk away. Obviously i would prefer the family take over once my limit is reached. But if they wont then I am gone and they will have to sort it out. I will of course do all I can to make sure things are sorted before it reaches me walking out. but I know I wont do this indefinitely.
    I can totally relate to you not wanting to do it any longer. This amounts to breakdown of care and you shouldn't have to feel like you have to go until you break. Its all so unfair, there is no easy answer. Anything I could suggest would seem trivial and not enough..... at this time you need out. talk to all that will listen....and get out, if only for hours/days to start with and build on that. there is only so much we can take. we are only human.............best wishes and hope you find some space.
  2. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    Yes, after I wrote my last reply, I read elsewhere that using a financial POA isn't dependent on mental incapacity. I'm sure my sister will already know this, it was just a gap in my understanding. No idea if she has scanned it onto her computer, but it's a good idea. Will ask when I see her (I do the same with passport, driving licence etc).

    Following Alice's post above, my sister seems to have been running on pure adrenaline for years. There will be a physical price to pay for that, I believe. If/when she stops caring for her husband, I anticipate a physical crash which could last some time. With luck she will come through that. She would say, however, that it's the emotional toll of caring that has pushed her to the edge of the precipice. That is certainly the biggest worry at the moment. In my view, if something (ie. the LA) doesn't give soon, either her body will stop her or her mind will. Hopefully not both at the same time. That it has to come to this for so many of you in the same situation is appalling, and my heart goes out to you all. Small consolation, I know. :(
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    That’s what happened to Dad last year he had to go into emergency respite care & we got 4 weeks. He didn’t pay.
  4. White Rose

    White Rose Registered User

    Nov 4, 2018
    That's ridiculous, how can the social worker be so unfeeling. Why should people have to put up with all that you are having to deal with Kindred. A friend of mine had a husband with dementia, she dealt with so much, including him being doubly incontinent. Eventually she accepted that he needed to be in a care home, they had no funds so it was council funded, it turned out he needed a nursing home rather than a care home and after some searching she found one that would take him. She was a different person after he was put in the home, a massive weight had lifted. Fight for it, you must for your health and sanity.
  5. dancer12

    dancer12 Registered User

    Jan 9, 2017
    Hi maryjoan:

    It's dancer again, PLEASE, PLEASE, PLEASE take care of yourself. You are a person too and you deserve a lot better than you are getting. I'll say it again if he is not getting any help other than from you, please get him some caregivers. It will give you some free time to yourself and also it will prepare him for being taken care of by other people eg. care home staff. Otherwise he will blame you for not taking care of him well enough. It will also give both of you a chance to see other people. The caregivers clean him up but also check on you to make sure you are okay and will tell you if additional help is required and may assist you to get some additional financing if you need it.

    Take Care.
  6. lis66

    lis66 Registered User

    Aug 7, 2015
    Hi Maryjoan I read your posts and truly sympthamise with you please go with what your heart tells you not easy I know sending ((((( hugs)))) xxxx
  7. PalSal

    PalSal Registered User

    Dear @maryjoan
    It sounds like you have reached the end and are overwhelmed.
    I feel that the bureaucracies and filings which seem to be required in the UK are endless and subjectively successful depending on where you live in the UK. From reading others comments and being on this site since 2011, it appears the support ( to an outsider) as inconsistent and subjective.

    Can you enlist the help of someone else to get you thru this process? Perhaps you have to just walk away from it? Or hire a lawyer to do the process for you if you do not have the energy for the paperwork and to do what is required. I am sorry you do not seem to be getting what you need. I am so sorry you are overwhelmed. I wish there was someone to step in and do the process for you. But I fear you must dig deep to make this happen.
  8. AliceA

    AliceA Registered User

    May 27, 2016
    I think this is the trouble we have to fight for what is needed when at our lowest ebb. Even when filling in forms for someone else we have to write as if it were them.
    I think the recipients of these forms are in denial.
    It is like snakes and ladders one slip and back to the beginning!
    No wonder people want to be able to give up caring. But like many thing it is Catch 22.
    I cling desperately to the advantages of home care in our case. It there was a care home I could afford near to home it would be a different the balance would change. However I do not have a sustainable £1000 plus a week for those in our area.
    We do not get respite easily, a real holiday break would help so many cope.
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    I don’t want to be a carer either @maryjoan and feel very overwhelmed at times. I feel for you and hope you can resolve this dilemma somehow to give you some peace.
  10. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    You do realise that when his savings or half your joint savings fall below the threshold that the LA will step in and fund his residential care provided he is deemed to need it, don't you? This is not the same as NHS continuing care which is very hard to get.
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    @Grahamstown & @maryjoan - your honesty & frustrations has resonated with me. I can no longer continue to push against the systems in place for Dads care to be increased. The cost to my own health & mental well-being has been too much; now I am stepping back.
    I am resigned to the system being as it is, & no matter what you are set up to fail & the system will win.
    Acceptance of this situation has brought new grief & though it tears me apart - I’m one person i cannot beat the system alone.
  12. Avis

    Avis Registered User

    Nov 2, 2019
    Me too. I have been married for 52 years to a man who has always been a control freak and now that he has MSA with dementia he is even worse. He thinks he is fine even through he can't find his way around the house, can barely walk, sees people who aren't there and undresses in inappropriate places among a thousand other small and large things. I was 17 when we married and he was 28. Now I feel that am wasting my life looking after someone who rarely speaks to me except to demand something or complain about something. Like you I am lonely and frustrated. I can't afford to put him in care and he refuses to go to respite as there is "nothing wrong" with him and it is my duty as his wife to look after him. After 7 years I am almost done.
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    sending (((((((((hugs))))))))))

    hoping it improves for you soon
    Take care of you
  14. Avis

    Avis Registered User

    Nov 2, 2019
    Thank you. it is nice to know others are thinking of you.
  15. Avis

    Avis Registered User

    Nov 2, 2019
    (((((((hugs))))))) to you too. xxxx
  16. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    It’s difficult sometimes not to feel alone, but you aren’t. It might take a few days to touch base ( PWD issues & life issues!) but I will always be around if you ever need to message or vent! x
  17. Joyt

    Joyt Registered User

    Jun 30, 2018
    In my case it was my gp who set the social service ball rolling. He diagnosed carer burnout. Looking back it’s all very hazy but somebody in the system swooped in and made the things happen that I couldn’t.
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    yes a good advocate in the system is essential
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    I know exactly how you feel - I know someone who refused to look after her mother on discharge from hospital - she bravely told the social services that if they discharged her mother to her care she would kill her mother. They believed her, couldn't take the chance and Mother went into a nursing home.
    Drastic, but it worked!!

    My OH and I have only been together 9 years and for at least 5 of those he has shown symptoms of what is now advancing dementia - I should have got out when I could.....
  20. sarahsea

    sarahsea Registered User

    Dec 19, 2017
    @maryjoan I really feel for you. I remember we corresponded earlier this year as we were in a similar position. Things have moved on here and my husband is in hospital under section 3 of the mental health act and will be moving to a care home once he is stable. He's only just 62. It's difficult to know when you can't care for someone anymore, but the crunch point came for me at the end of May when a very good friend (someone who had known me for 40 years) told me that I was ill and couldn't go on. She lives more than 300 miles away and used to visit regularly to offer support. We have no family or friends locally as we moved here just before we got married 5 years ago. I knew that I was depressed and anxious, I knew that I couldn't sleep and I knew that I was drinking too much wine, but it took someone else to tell me just how much my mental health was suffering.
    In the end I couldn't keep my husband safe, reasonably healthy and happy. He was constantly out of the house talking to strangers, getting too close (and on a couple of occasions being pushed over), he often refused his meds, he hadn't washed at all for about 6 months. He was very confused and anxious, had sudden angry outbursts and couldn't follow conversations. He tended to hit inanimate objects rather than me, but I didn't feel entirely safe. After an incident at the day centre, I was asked by his CPN if I wanted him to have a mental health assessment and I said yes. That resulted in him being sectioned.
    Sometimes, I feel guilty because I requested the assessment, but then I remind myself that I was at the point of walking out and there was no-one else to care for him. It was never going to end well. He could have been assaulted or mugged on the street, he could have been seriously hurt. I simply couldn't keep him safe. Now there is a whole team of people giving him his meds covertly, persuading him to wash and looking after his needs. And at the end of their shifts they go home for a well earned rest. That's something that carers never really get.
    I know that this isn't my husband's fault and nor is it mine. Dementia is a brutal disease, different in every case and all carers do their best in an impossible and distressing situation. We care out of love and loyalty, but I think that one of the reasons that we often go on caring for too long is because over time we accept and adapt to the way our lives have changed. One of my brothers died in February and I just accepted that I couldn't go to the funeral as I couldn't leave my husband overnight. I accepted the fact that my husband needed to know where I was all the time, that I couldn't work, or visit friends. Our lives have changed beyond recognition over the last 4 years, but it became the "norm." I hope that you are able to find a way out of your situation. There comes a time when we can do no more and someone else, or the state has to step in.

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