I feel I am losing myself at times as well as my mother

Discussion in 'I care for a person with dementia' started by CWR, Oct 28, 2019.

  1. CWR

    CWR Registered User

    Mar 17, 2019
    49
    My mother was diagnosed late 2016. At first I found the getting up during the night difficult to deal with but I devised a strategy. I learned not to leave her clothes or teeth or glasses downstairs in case she put them on, read the GO back to bed signs ( o the wonderful days when she could read...),and took them off, leaving them somewhere obscure. Then last year, when she wandered out and locked herself out, I started thinking of ways of dealing with this. We had a re-structure at work and I requested
    to be able to stay local and not do more nights. I was assigned to another town and another night, so I had to turn that down and lost £160 per month in the process. I got into a rhythm with respite ( thank God for respite-mum is Irish, and a very friendly soul, she settled in wherever she was put).
    I was n't worried about how she was when I was at work.She could read her magazines. Until last year, when she lost the ability to read , that is. I struggled against it, willed her to be able to understand the messages I had left for her This is Wednesday Charles will be back after 8. I felt I was losing control of my life and my mother's. Then there were the toileting issues. I joked about how my life was ruined by the oriental twins Pee and Poo, but it was still hard to accept. Every year something goes. This year she has had a cold twice, and she lost her mobility and was more confused than before. I had her taken to hospital to nip any infection in the bud, but she was worse when she came back. Now she is bedbound and I can only hope it's a temporary reaction to the infection.
    But I feel I am losing control of my life, what with carers and physios and everyone . I am being told that I will need to get a hospital bed put in, but dread the disruption it will mean to our small house( the whole business of getting rid of a perfectly good double bed we have no space for, for a start..). The phrase I use is that I feel like a bystander in my own life. I know that it is good to keep mum at home rather than have her in hospital, but it's a relentless wearing away, an erosion, not just for mum, but for me too. I feel I am losing myself.
    Incidentally, I am an only child and the sole carer, but I am all too aware that having siblings doesnt mean the caring is shared, so I harbour no delusions there. i do get annoyed onthe rare occasions when I see my cousins and they ask how mum is. I have to bite my tongue or I would get very very rude indeed. I have found that water is thicker than blood. Sorry for rambling on, I just feel adrift at times.
     
  2. TNJJ

    TNJJ Registered User

    May 7, 2019
    768
    Female
    cornwall
    Hi. It is difficult especially when an only child(me too). I look after dad with the help of carers 4X a day.I have stopped doing dad's personal care and leave it for the carers as it got too much.He has poor mobility and can only walk with a gutter frame or out in a wheelchair..
    Dad has a hospital bed as it was needed as he had suffered a stroke.It has been a godsend. He also has a 1bedroom bungalow so there is nowhere for anybody to sleep unless they do a waking night in a recliner.Did that and got a crick in the neck.
    I dream at night about what I have to do during the week for dad. Sometimes it's a nightmare and it does feel like my life has been taken over..I very rarely socialise..

    Do you get a chance to go out? Will anyone stay with your mum whilst you go out?
     
  3. CWR

    CWR Registered User

    Mar 17, 2019
    49
    Luckily I do get respite, but I always find once it ends it's like being dunked in cold water. It's difficult at the moment because of her losing her mobility.Normally, she would have gone to daycare on Monday and to a lunch club the rest of the week. Maybe it's harder precisely because her mobility has been so good. I work part-time, only full days are Monday and Friday, the other days I go out shopping but time myself.At the moment, I get a taxi to the shops and back to minimise the time I am away. I don't have anyone who stays, apart from one occasion when carers came to let me go to the shops because there was nothing in the house.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,845
    Kent
    Hello @CWR.

    If your mother needs so much care and a hospital bed which will disrupt your home , plus the fact you are still working , don't you feel the time may be right to change the respite care into permanent care.

    Your mother seems to accept respite . You say she settles wherever she is. You are the one who is struggling and I'm sure permanent care would solve most of your concerns.
     
  5. CWR

    CWR Registered User

    Mar 17, 2019
    49
    She fell again. The physio is going to see about ordering a hospital bed, but I recognise that if this doesnt work, I may need to implement plan B.To be honest, I have been resisting, but my partner said I need to start investigating the logistics of her going into a care home. Hopefully the hospital bed will make a difference.
     
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    768
    Female
    cornwall
    It should do.But there is only so much you will be able to do.Despite wanting to do more ,sometimes we cannot for what ever reason..I get exhausted just trying to keep on top of carers.Plus other stuff..I hope things get easier..
     
  7. CWR

    CWR Registered User

    Mar 17, 2019
    49
    I have been to my doc for a sick line. I need time off to get things sorted, and I can't do that if I'm trying to keep all the plates up in the air.Hopefully by next week I shall have a better idea of what to do for the future.
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,821
    My Dad went in for respite care & never came out, the routines & activities suited his needs & as he didn’t know where he was when home it made it easier.
    A hospital bed is a medical need, if you are being signed off work it’s time to step back ( says she with two nervous breakdowns under her belt & a third waving away on the horizon!)
    Be kind to you for a little while, & reassessment of the situation is a continuing requirement.
    ((((((((((((Hugs))))))))))
     
  9. CWR

    CWR Registered User

    Mar 17, 2019
    49
    She came home today, and at first I thought: can I cope?
    Then the carers came and I think it may be possible to look after her at home for a while yet. I will see how it goes. I am grateful for support ( not from the family who only turn up at funerals) from my colleagues and people on here.
     
  10. lis66

    lis66 Registered User

    Aug 7, 2015
    274
    Hi CWR I can totally relate to everything you have said ,I feel exactly the same way I'm an only child and care for my mother with AD although she still lives with dad so at least I don't have it twentyfour seven ,mum has had numerous falls always resulting in fractures,I have just returned to work after being off six months with stress dad was critically ill and nearly didn't make it I think I was close to carers breakdown ,I feel so unhappy most of the time living and seeing what this horrundeous illness does to our loved ones xxxx
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,821
    the torrents of grief gradually become less intense & a sad resignation takes its place.
    Sending ((((((((hugs))))))))))to you both
     
  12. CWR

    CWR Registered User

    Mar 17, 2019
    49
    I find it hard when my house is not my own; when nurses move things around and suddenly it's not my house. My house was always my refuge. Now that's gone, I feel bereft. Thats what I mean. Losing my mother to this disease and losing control of my life, as professionals take over and I am bit player in my own life.
     
  13. CWR

    CWR Registered User

    Mar 17, 2019
    49
    I have bitten the bullet. Last Friday, I finally decided that I couldn't look after her 24/7 and decided to have her put in a care home.I am fortunate insofar as mum is a very sweet-natured lady and I am humbled to find how many people miss her from her lunch club and were asking after her.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,821

    Oh bless you, sending a virtual (((hug)))
    I think your decision is the right one for both you & your Mum. It’s in the best interests of your Mum, & it’s not an easy decision or process.

    I hope you get to be the daughter again, & have some lovely new memories of mother & daughter time together. xx
     
  15. CWR

    CWR Registered User

    Mar 17, 2019
    49
    I have done so
    thanks! But I am her son! That made it harder in some ways looking after her, tho'. The clincher was that the only way I could keep her safe on Fridays when I work would havebeen to have kept her in bed,and that would not have been fair to her.She blossoms in company, and I often wondered if I was being selfish looking after her at home when I knew she loved company.
     
  16. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,821
    Ooops! apologies

    you are the son... that makes what you did even more impressive. I can’t imagine my OH being able, capable or willing to do what you did for your Mum.

    l hope you have some lovely Mum & Son new memories xx
     
  17. lis66

    lis66 Registered User

    Aug 7, 2015
    274
    Well done you CWR for having made one of the hardest decisions you probably will ever have to make ,you were totally thinking only of your mum I'm so glad she has settled well,it takes a huge weight of your shoulders,I really need to start viewing homes but keep putting it off as long as dads ok ,but that could change in a heartbeat take care xxxx
     

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