Who decides that someone is a carer?

Discussion in 'I have a partner with dementia' started by Annakey, Dec 5, 2018.

  1. TheBearsMummy

    TheBearsMummy Registered User

    Sep 29, 2017
    98
    East Midlands
    Annakey I think you are very brave and I hope you will find the resolve to stand firm and not sacrifice your life as well as his.
    You are quite right there is no joy at all in this and sadly no way to bring back the person you love. I have watched other people have their life slowly sucked away from them as they have sacrificed everything for someone who doesn't remember who they are.
    We are 6 years into our caring and there may be many more yet to come, it is not a short amount of your life that you might lose it could be many, many years. The financial toll too can be very high.
    Please don't think you will be judged harshly for saying no and please protect your own health and finances before it is too late.
    There is a lot of good advice and support to be found on this site and I wish I had found it sooner.
    Stepping back is not wrong and it will allow you to retain the happy memories of better times without the overlay of resentment and despair that this awful disease brings into our lives
     
  2. kindred

    kindred Registered User

    Apr 8, 2018
    2,073
    Ah, now there you have it sweetheart. Caring creeps up on you and by the time you might want to escape there is no energy left either! I don't think I would have known how to escape, I just kept on enduring like I was hypnotised.
    There is joy back in my life, well a bit, when I go to Keith's nursing home and I experience the love and the tenderness and the mad fun there ...it is possible. Never care free again, but bit of joy now and then. with love, Geraldine aka kindred.
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    2,073
    I love your post, Andrew, really do. I love your perspective. When people moan about how awful it is today, I always say but at least we are not having German bombs dropped on us ... You are right. We have to make peace with ourselves and find meaning. My motto has always been go into the dark, show no fear. that keeps me going. Thank you.
    warmest, Kindred.
     
  4. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    145
    Male
    Liverpool
    As many have already said, caring creeps up on most of us without us realising it. Mum has over the past 12 months or so moved on from mild symptoms where she could get by with bits of help to needing help with all tasks and suddenly I am having to deal with things that no one ever wants to have to deal with. She is still very caring and pleasant and does accept help from carers and I think that is the only reason I am able to carry on for now. However I'm starting to see chinks in even this now so am not sure how much longer I can carry on or for that matter it is safe for her to be in the house alone - we all have our limits!
     
  5. AliceA

    AliceA Registered User

    May 27, 2016
    1,918
    Andrew's post made me think. I suppose that we are all conditioned by out past, and that fuels our expectations.
    My father was conscripted, I saw the devastating effect on my mother. I did have to shelter from falling bombs and doodlebugs. Later when at peace friends were conscripted into conflicts not of their choosing via National Service. We survived so it brought the gift of stoicism. I would not advocate that as a learning tool.
    So I suppose choice means something different to each one of us.

    Joy means something different too. I love the phrase 'finding joy in small things'.
    Kindred has that gift, we all enjoy the humour of her thread.

    Whatever we choose there are consequences, and our blinkered eyes choose the right option at the time.
    Stay or leave (ouch, sounds as if I am wandering into the Brexit debate!:(:))
    Tomorrow depends on choices today.

    Caring depends on our being able to survive to do it, violence is a redline for most, so is the wavering line of our own mental and physical health, other responsibilities may be for some people. We all have our abilities, my physical ones are weaker now.
    What some may feel and see as selfishness is merely self survival. We judge ourself at the end of the day and too often far too harshly.
    When we reach that point I hope we all have the courage and endurance to stay or leave.

    Whatever the situation please, do not feel guilty. Only you know how you cope best. I visited a care home the other day, people were happy and safe. Sometimes, God and money willing, this is the best option.
    Ignore those out side the situation they are not wearing your shoes, nor mine!

    this is a brave and honest thread, well done for starting it and posting on it.
     
  6. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    145
    Male
    Liverpool
    I think you sum things up in a very realistic and fair way @AliceA .
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    5,463
    Female
    Scotland
    You use the word stoic which is so appropriate in this role of ours. Many of us don’t want to be in this place but grit our teeth and get on with it. It now suits me if my husband is almost silent and that is a terrible admission. Talking and sharing was what we did best for half a century but I have little interest in pointless nonsense. I never wanted to be a nurse either but the basic physical nursing duties I find I can do almost routinely.
     
  8. Annakey

    Annakey Registered User

    Oct 26, 2018
    18
    Female

    Thank you Martarita and everyone else who has replied. It has helped. I'm not really brave, I"m simply not prepared to sacrifice my health and well being for someone incapable of appreciating it if I did. We have been together for nearly 30 years and had a good relationship. That has gone and I"m finding it hard to remember the person he used to be.

    I have thought it all through and know that I'm not going to be able to look after him when it is 24/7 with a needy stranger. If my speaking out has helped others I'm pleased. No one should feel they have to take on the task if they feel unable to do it. And it isn't fair on the sufferer to be looked after by someone who is resentful and conflicted.

    Good wishes to everyone here and again thank you.
     
  9. hatto22

    hatto22 New member

    Aug 24, 2018
    8
     
  10. hatto22

    hatto22 New member

    Aug 24, 2018
    8
    Silence is Golden. Nothing to feel guilty about there. It all becomes a lifestyle. Creeps up on us and before we know it we're living the dementia dream. :rolleyes: And the same questions are spun out time and time again as routinely as the sun goes up and goes down. And for some strange reason we are always left to feel guilty about something that has happened during the day. But for each day that we do this we become a better version of ourselves. And as a consequence the expectation of ourselves grows higher and higher as the illness and world around us moves on. We steer ourselves in a dinghy and by the time the journey's ended we're gliding along in a full blown yacht of many colours. Because what we're all doing is brilliant. So let's all be proud of our efforts instead of wasting time on shame and guilt. The only reason we feel these emotions is because we're around long enough to experience them. We're all a pretty special bunch!!
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    1,918
    Well said Hatto22. Xxx
     
  12. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    614
    If your child is in hospital for months you're still a parent. If your PWD is in a care home you're still a carer. No need to feel guilty in either case. And if any level of involvement is too much, you can walk away completely. Your life is your own. Your decisions are your own.
     
  13. kindred

    kindred Registered User

    Apr 8, 2018
    2,073
    Oh welcome to our forum and with posts like this, long may you be with us!! with thanks and warmest wishes, Kindred.
     
  14. Teddy1960

    Teddy1960 Registered User

    Oct 24, 2018
    46
     
  15. Teddy1960

    Teddy1960 Registered User

    Oct 24, 2018
    46
    Just found your post whilst searching for someone who feel like me.

    I too cannot be a full time carer or nurse. I like you do everything, hold down a full time job, cook ,shop, manage finances and already I am starting to feel resentful. Why me , you know the usual questions.

    I have a week off work and feel trapped . Work is my respite xx the admiral nurse insinuated I would have to give up work I am 58 and know way am I going to I don't care what people say it's my life xx
     
  16. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    238
    i haven't given up work but I do pay for carers while I am out at work - so we end up working for a little - but I prefer it that way. Work is respite. I am now 61 and in my fifth year of working myself and paying others to care.
     
  17. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,251
    East Sussex
    Hi @Annakey

    As has been mentioned, the duty of care lies with SS, so no one can make you be a Carer, although, with what you do now, you already are one (technically). Even just the weekends mean you are doing over the “minimum” number of hours to qualify for Carers Allowance :eek:, although, that is only paid if you earn below £110 a week ( it might have gone up, but not much)

    This is already increasing your stress levels & you have health issues as a result, or exasperated by it. You have to look after yourself. Even if you wanted to, you are no good to anyone, if you get ill too :rolleyes:

    Never in a million years did I think I wouId care for my mother. She wasn’t the cuddles & kiss it better type of mum, she never babysat, I took the kids to their house, did everything for them & my parents could say they saw their grandchildren :rolleyes:

    That said, like many I fell into caring by mistake. First dad was ill (not dementia), so I visited every weekend, then mum was diagnosed shortly after he died. I carried on visiting until I got to the point where I couldn’t keep going. Working full time & 160 mile round trip every weekend for nearly 2 years I was on my knees

    At that point I made the decision to move in with mum. It wasn’t an easy decision. It took me 3 months to figure that I couldn’t not do it, even though a large part of me didn’t want to. I dragged my heels for a further 3 months, letting job searches make the decision. Not that I kept working for long after the move :(

    Having decided, I certainly wouldn’t say I thought there was any “joy” in caring, but I was lucky that mum mellowed in some aspects, I found some voluntary work & I arranged a cleaner twice a week. I entered her world at her pace & things improved. Not sure if it wouId have worked with a lover :eek: I’m pretty sure it wouldn’t, so I’d have been thinking like you

    The practicalities....

    Your OH is assessed as an individual, just his income & savings are looked at for any help by SS. So, if you don’t already have separate bank accounts, separate them now. Have any & all your income paid into a different account. If you have joint savings, separate them. Set up a joint account & transfer money from both your accounts into that for the bills. By that, I mean gas, electric, rent/ mortgage etc

    His money should pay for his things, clothes, meds, travel costs to appointments, in other words, anything he wouId pay for if you had no input. Keep records of spending. Just throw the bills in a file, it doesn’t need to be pretty, just so it can be found if needed

    If you need a new bathroom, different car because if his diagnosis, the cost is his alone

    Apply to the council for a council tax reduction on the grounds of (I think it’s) severe mental incapacity. His doctor has to sign the form, it should be free

    Even if you are self funding (he has savings of over £23,500), ask SS for an assessment. If he is self funding, they will probably smile & tell you to arrange whatever care you want, but, he’s on their radar for later. They may offer info on day centres, Befriender’s, care homes, but you will have to ask for this with most. Money is tight & they don’t tend to offer it out :(

    Whatever your line in the sand is, that’s your line. No one else is walking in your shoes, so no one else has any right to make you feel any guilt.
     
  18. lis66

    lis66 Registered User

    Aug 7, 2015
    184
    Great post hatto22 I am going to take your advice on board thank you x
     
  19. Teddy1960

    Teddy1960 Registered User

    Oct 24, 2018
    46
    Ths
     
  20. Teddy1960

    Teddy1960 Registered User

    Oct 24, 2018
    46
    Thank you so much for that very useful post. I really appreciate you taking the time to write such wise words
     

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