28 and at the end of my tether

Discussion in 'I care for a person with dementia' started by notimetoshine, Dec 27, 2016.

  1. notimetoshine

    notimetoshine Registered User

    Dec 27, 2016
    3
    I have been a long term 'ghost' on this forum, but finally decided I had to take the plunge.

    It is 3.38am and I have just put my Grandmother back to bed for the third time this evening. If I'm lucky I'll get a few hours sleep, if not, hello Mr Coffee.

    I look after my gran, living with her and trying to fit in a semblance of a life around her increasingly advanced dementia. Between me and an Uncle and his wife, we try our best to keep her comfortable, happy and out of a care home. I was always close to her, and my staying with her seemed to have progressed from when she was sick and most weekends, to the odd week, to a couple of months and now more or less constantly. Her condition seems to decline in regular 3 monthly intervals, and I have gone from simply 'being there' to provide reassurance, to picking up incontinence pads, cleaning up after accidents, calming her increasingly severe panic attacks, cajoling her to eat and sleep and stay warm. I could go on, but having lurked on these forums I think everyone knows.

    The reason I am finally posting, is simple. I am a 28 year old guy whose life has been on hold for the past two years. I am at the end of my tether. I can't pursue the education options I have because it would mean moving away. I can't work and rely on my rapidly dwindling savings and what is laughably termed a carers allowance.

    I speak several languages and ideally I want to pursue a Masters in Spain but that would mean leaving her. I am avoiding old friends from uni and school because of the embarrassment of essentially being in the same place I was when I graduated!

    I have no social life anymore and find making friends increasingly difficult. What is worse, I have to everyday put up with the stigma of being a young guy who does this for his grandmother (images of weird 40 year old guys with 8 cats living with their mothers and all that) and am exposed to my gran doing things that no guy wants to see any of the women in his life doing.

    Now, (having just read what I have written) I know I sound like a douche writing this, and at the end of the day it was my choice, and I don't regret it, but I just have to rant somewhere. I am truly at my wits end. I could leave, but the guilt at jumping when things get tough is not something I could bear easily.

    I don't know why I felt the need to release these Joycean stream of consciousness at you all but I really just don't want to feel so isolated, and really wanted to know how anyone else in my position copes with it all?

    Any advice or even a chat would be much appreciated :)
     
  2. NancySpain

    NancySpain Registered User

    Dec 27, 2016
    19
    Not much help. But I have a 19 yr old daughter at risk of same position as you. We moved to live near my parents and they have both got worse. I don't want Craig to be all we are about
     
  3. NancySpain

    NancySpain Registered User

    Dec 27, 2016
    19
    lol Craig

    Caring is what I meant to say
     
  4. Dayperson

    Dayperson Registered User

    Feb 18, 2015
    277
    Female
    Shropshire
    #4 Dayperson, Dec 27, 2016
    Last edited: Dec 27, 2016
    I know the feeling

    I know what it's like to be young and have to look after someone with dementia. I am 32 and mum has had dementia for a few years but things have got worse this last year. My life is also on hold, no job and life as I have to look after her. I went to visit realtives, came back home and within a day I felt depressed at the way mum was behaving and making me feel. I tried very hard for Christmas day but mum made me feel depressed and I spent time alone yesterday.

    It is very tough, I have had suicidal thoughts and thoughts of running away but I am here for the long haul. I am put off a relationship because I don't want anyone to go through what I have.

    I don't have it but have you considered respite care to give you a break and get you out and away? I wish we had more help but dad is stubborn and too proud to take what is on offer.
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,442
    Ok - I'm going to be blunt: why not a care home? Because I am totally opposed to anyone, but especially a person of your age, putting their life on hold like this. And there are good care homes. You have to do your research, but they do exist. Perhaps you have valid reasons for doing this, but it rather sounds as if you have slipped into it and I'm sorry: that's not fair for you.
     
  6. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    #6 Chemmy, Dec 27, 2016
    Last edited: Dec 27, 2016
    I'm with Jennifer on this. You do have options, and as well as a care home, bringing in extra help to do the care duties you undertake now is another. Call a care agency today - you could have something in place by the end of the week. The responsibility of paying for this is your grandmother's (if self-funding) or the local authority via an assessment, if not. The financial arrangements are not your problem.

    My children are just a little older than you and I have already discussed what they should do if either their dad or me needs care in the future. And giving up their own lives to look after us isn't on the list.

    As for the level of care you do, well, intimate personal care was my line in the sand with my mother and mother in law. I wasn't prepared to do it and if you're not happy with it, neither should you.

    PS meant to say , welcome to TP :)
     
  7. Greycardi

    Greycardi Registered User

    Sep 26, 2015
    123
    When I read your post I first of all felt how much you have already done and how kind you have been. But you are paying a very heavy price - maybe too much. I often face similar feelings of dilemma because I like to live a very full life and have lots of friends and interests but my parents really need me. Is life for the living or should we dedicate ourselves to caring for the most vulnerable family members? I would recommend that you have a frank discussion with your other family members and explain your feelings. You may find that they also feel it is time to change the arrangements. And visit some nursing homes with a high standard of dementia care -they do vary and the good ones can be very good indeed. You don't have to decide immediately but you will be better informed.Don't abandon your plans of studying in Spain - think about who you are and what you want to do for the rest of your life. All the best for the future. GC
     
  8. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,474
    Radcliffe on Trent
    I'm with you Jennifer. It's very commendable in one way, but I really wonder if your grandmother would want you to be abandoning your own hopes and dreams for the future? It's the very last thing I would want my daughter to do. I would want her to find the best professional care she could for me and spend as much of my savings as needed so that she could live her own life well.
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,442
    I think most of us who have cared for a parent with dementia have thought long and hard about this, and many of us have already had the conversation that Chemmy and Pickles (and me) have had with our own child. Mine went along the lines of: your only responsibility is to find me a good care home and make sure they are fulfilling their contract. My own mother, in one of her moments of clarity said: I hope you have a life other than this (this was caring for her). She had forgotten at that moment that I was married with 2 children and a home 3500 miles away. So I reassured her. But she knew at this moment that she didn't want me to be a slave to her illness and I have to say, it was liberating. Even if you've never had that conversation there are few loving parents or grandparents who would wish to burden the younger generation like this.
     
  10. Peirre

    Peirre Registered User

    Aug 26, 2015
    160
    I suspect we all have had moments where we say "I want my life back" I know I have.
     
  11. Mrs W

    Mrs W Registered User

    Nov 3, 2012
    35
    I agree that you need to continue your life and therefore make the appropriate arrangements for at least day Care to enable you to do things you want to. No one would want you to give up on your own life to care for them but your grandma just cant verbalise this. Be kind to yourself or your mental health will suffer too. My mother in law is 69 and has been diagnosed for 7 years now and I was 28 at the time so know how you might be feeling.


    Sent from my iPhone using Talking Point
     
  12. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    No time to shine. You need to live your life,it goes by all too quickly. I am 59 my husband is in a home and I am now trying to find me again. We all have a small window of opportunity and you need to open yours very wide and fly out of it. Tell the auntie and uncle this and sort out either them caring for her and putting their lives on hold or a CH . Be assured some like my husband blossom in a home as he has much more stimulation and appropriate care in the home . Just sort it, get on with your life,you have no reason to feel guilty you as it appears to me have given more than enough.
     
  13. notimetoshine

    notimetoshine Registered User

    Dec 27, 2016
    3

    I should have clarified in my original posting, we aren't opposed to a care home, but the idea was that we would wait until my gran wouldn't really understand that she was in a home or that it wouldn't be such a wrench for her. The other problem is that locally our care homes are notoriously bad, understaffed, with really inadequate care.

    It wouldn't be so hard if her home care was actually effectual, but we are at a loss when dealing with the crowd that provide her care. And the social work team hasn't been much better.
     
  14. notimetoshine

    notimetoshine Registered User

    Dec 27, 2016
    3
     
  15. Georgina63

    Georgina63 Registered User

    Aug 11, 2014
    955
    Thanks jenniferpa that is so well put! I left a comment along those lines on another thread earlier today, and it certainly helps (me) to be reminded in moments of doubt. Gx
     
  16. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,474
    Radcliffe on Trent
     
  17. Mrs W

    Mrs W Registered User

    Nov 3, 2012
    35
    My MIL goes to a care home for her day care rather than just having someone come into the home. It's a lovely home and I've heard great things about it so that could be an idea?


    Sent from my iPhone using Talking Point
     
  18. theunknown

    theunknown Registered User

    Apr 17, 2015
    385
    I agree with others; you really need to be living a life that works for you. It sounds as if you've done far more for your grandma than would be expected. On the positive side, you'll probably be a more understanding and thoughtful individual because of this experience, but you need to live your own life.
     
  19. Greycardi

    Greycardi Registered User

    Sep 26, 2015
    123
    We have had a poor experience of carers coming into the house. They are unreliable about turning up, they are unpredictable and deliver haphazard care. Plus the new faces all the time are quite intrusive and upsetting for anyone let alone someone with dementia. You also have to make a key available to them which is a security risk. It is cheaper and the NHS promote it as if it was a good solution but the reality does not live up to the promise. Please think about a home which specialises in dementia care and has a 'good' rating by the Care Quality Commission. You should also get a continuing care assessment to see if the state will fund any element of the cost.
     
  20. Greycardi

    Greycardi Registered User

    Sep 26, 2015
    123
    Notimetoshine, I hope you are ok and making progress. I have another observation to make about your situation based on my own experience. If one family member appears to be willing to take on the burden of caring for a relative, the others will readily lean on them and kid themselves that it is ok. I have that experience of being 'second in command' and leaning heavily on a relative who did more and more for my parents but then went off the rails...for me now to step into that role of primary carer is quite an adjustment involving a lot of travelling, reducing working hours and giving up my weekends. Tell your relatives your plans in advance and be firm, they might resist the change but they will need to adapt to the new circumstances.
    I hope you will post again and let us know how it is going. Wishing you all the best, GC
     

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