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
    45
    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
    1,743
    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
    1,743
    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
    118
    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
    977
    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
    118
    Male
    Liverpool
    I think you sum things up in a very realistic and fair way @AliceA .
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    4,964
    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
    11
    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
    2
     
  10. hatto22

    hatto22 New member

    Aug 24, 2018
    2
    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
    977
    Well said Hatto22. Xxx
     
  12. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    517
    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
    1,743
    Oh welcome to our forum and with posts like this, long may you be with us!! with thanks and warmest wishes, Kindred.
     

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