Giving vs Caretaking

Discussion in 'I have a partner with dementia' started by PalSal, Dec 13, 2019.

  1. PalSal

    PalSal Registered User

    Dear TP friends,
    I read prayer and meditations everyday. Today this one was very profound for me. It gave me a different view of my role and my caring and giving for Nick. Keeping me focused that this is my life and I must do and give what I can for us both to enjoy life and our life together. This is not always easy. It was interesting that the term caretaking is viewed in this meditation as negative. I liked the idea of holding the receiver, the real person in high esteem. All about dignity.
    It was a helpful and good reminder for me today.
    Thanks for being here dear friends in TP.

    Friday, December 13

    Don't be afraid of giving.
    For a while, we may need to back off from giving as we learn to discern the difference between healthy giving and caretaking, which leave us feeling victimized and others feeling resentful.
    This is a temporary spot.
    To be healthy, to do our part in this spiritual way of life, to be part of the endless cycle of the Universe, guided by our Creator, we need to give and receive.
    Both parts are important.
    What is healthy giving?
    This is a fine lined behavior each of us must seek to understand for ourselves. It is giving that feels good and does not leave us feeling victimized.
    It is giving that holds the giver and the receiver in high esteem.
    It is giving based on a desire to do it rather than from a sense of guilt, pity, shame, or obligation.
    It is giving with no strings attached. Or it is giving based on a clean, direct contract.
    Whether it is giving our time, efforts, energy, comfort, nurturing, money, or ourselves, it is giving that we can afford.
    Giving is part of the chain of giving and receiving. We can learn to give in healthy ways; we can learn to give in love. We need to keep an eye on our giving, to make sure it has not crossed the line into caretaking. But we need to learn to give in ways that work for us and others.
    Today, God, guide me in my giving. Help me give to others in healthy ways. Help me give what feels right, what feels good, what feels clean, and what I can afford.
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    I empathise with this. I am no saint but I do feel that I must do the best I can, I don’t feel bitter that’s for sure, and I had a thought yesterday. A friend told me that two of his friends had been diagnosed with cancer and the friend was terribly upset. I thought about my husband who is physically well but gradually dying from malnourishment, and knowing him as well as I do, I am glad he has been spared a sick body and a healthy mind. He could never have coped with what you have to go through with cancer. Now this only applies to him because not everyone with one of these diseases is like my husband. He has no idea what is wrong with him even though he was told. He is happy with his life he says, when people ask and I think he is, he just sleeps most of the time, eats hardly anything and doesn’t want to go anywhere or do anything. Yesterday I thought he might like to do some drawing so I put a piece of stiff paper and a coloured pen in front of him. For the first time I have ever seen since he fell ill, he was quite aroused and rather spat out that he has written and drawn all his life and had had enough and he didn’t want to do anything any more. Since he has drawn more scientific diagrams, complicated and colourful, than I have had hot dinners, I was suddenly aware of how burnt out he felt. Thank you for sharing this with us.
  3. Lirene

    Lirene Registered User

    Sep 15, 2019
    That is beautiful and so true, thank you so much for sharing xx
  4. PalSal

    PalSal Registered User

    In the past, I have been very resentful and upset with my life with Nick. But when I am in the groove...of acceptance, it is amazing what I can deal with. The imminent decline and failure of Nicky's physical and intellectual capabilities, disappointments, accidents, lack of companionship. I do what I can to help him get thru each day, I do my best to stay in the day....not look at the future. I will deal with that when the time comes. I do plan alittle and try to take anticipatory steps to avoid crisis. It does not mean that my future will not have crisis around caring for Nick....
    My next step is separate beds or separate bedrooms. He does not want this. And I am not sure if I would get more sleep or not. As sometimes he needs me in the night. So I think sometime in 2020 I will look at separate twin beds which would keep me in the room but not dealing with his muscle spasms in the night and generally often restless sleep .
  5. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    I have to attend to my husband during the night so separate bedrooms (if we had two) would not help. Unfortunately our one bedroom is just too small to take twin beds.
  6. White Rose

    White Rose Registered User

    Nov 4, 2018
    Hello PalSal, I like what you've written and your approach to caring, what I'm asking myself though is how much selfless giving can there be? I mean it seems to me we carers give so much of ourselves and our time, we have to give up our dreams and ambitions. Sometimes I can care for my partner without resentment but to do it without a sense of obligation or pity is more difficult. I can think of so many other things I'd rather be doing, I try telling myself that this is my job for the time being and I have to accept it. Although in the real world being a carer is the last thing I would ever consider doing as a job, likewise being a nurse, though I have huge respect for those who do those jobs. Yet here I am doing the job of carer for zero financial reward but I guess you cannot look for reward, or your reward is perhaps just the satisfaction of making the life of your loved one better. I wonder if it's easier to care for a parent, especially a mother because she brought you into the world and cared for you for years till you left home. But caring for a partner/husband with Dementia when the chances are we (females) are the ones who've always done the caring for them even before Dementia seems to be a tall order. Do men find it easier to care for their wives with Dementia or do they just get on with it without complaining? I think you are a better person than me PalSal. Perhaps your faith and believe in God helps. I'm probably rambling, just trying to make sense of why I find this caring role so hard and wishing I could find acceptance of the role of carer and selfless giving like you.
  7. TNJJ

    TNJJ Registered User

    May 7, 2019
    Hi. Caring for my dad has not been easy. Even though he brought me into the world.
    I’m afraid mine is out of duty with a little love and compassion thrown in. But I have had to take a step back which has been necessary for my own mental and physical health. .. Dad is a “Victor Meldrew “ made worse by dementia..
  8. marionq

    marionq Registered User

    Apr 24, 2013
    A couple of years ago I moved into a smaller room adjacent to our main bedroom. Had I done this earlier John would have come looking for me. I must have timed it right because he didn’t really notice. Once comfortably tucked in he went to sleep immediately. Since he died in October I have stayed in this small room and it now feels like a nest. I don’t want to move to a bigger room and feel this is mine where I can listen to the radio or read without feeling there is a space next to me.

    You’ll know what to do when the time comes @PalSal.
  9. PalSal

    PalSal Registered User

    Thanks marionq....your advice is always sage and welcome.
  10. PalSal

    PalSal Registered User

    I find caring very difficult....I am not a carer by nature at all. And regarding having a life. I was only 48 years old when my hubby was diagnosed and he was 49. I had to go on with my life....much of the time without him. I continued to work for many years and then was ill and retired in completely in 2017. But I have made a big point of having outside helpers long before Nick would agree to daycare.
    I currently have four temporary carers/walkers on contract. And he now goes to a daycare 3 days each week.
    Over the years , I played in a rock band for three years (sadly it is now broken up) I sing in a classical ensemble choir, I make Bluegrass music, I go to art exhibitions and museums, I have two season tickets to the Sinfonieorchester Basel and I just took up Mahjong in Sept. I am no longer able to afford to travel but I compensate with other activities.. I selfishly look to my own interests. It is a great tragedy , Nicky*s illness, but it need not take two lives....his and mine.
  11. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    I couldn't have put it better myself. The only thing I would add is that the reward that I would welcome is that my husband was aware of all that I did for him. But of course that won't happen.
  12. White Rose

    White Rose Registered User

    Nov 4, 2018
    Hello PalSal, how very sad for both of you to get dementia so young. I was 52 when my partner was diagnosed but he is nearly 20 years older than me. Like you, I have been trying to keep a 'normal' life going, I was working part-time till recently but it's impossible to leave him for more than an hour now. The key is getting the right care in place, not easy and it's so expensive. I shall try to take a leaf out of your book in the New Year and get out by myself more - I used to always take him with me because he enjoys going out, concerts, movies, plays, etc, but it's just getting too difficult now, the recent disastrous trip to London has shown that. Sadly for him his world has shrunk to not much more than the house and some walks. He doesn't like the day care I was taking him to, too much sitting around and no-one to talk to! Hope you manage to have a lovely Christmas.
  13. PalSal

    PalSal Registered User

    Our daycare is in German which is an added level of problem. Nick never mastered German and speaking and communicating is difficult even in English. But now after going for year and half, he goes willingly. The daycare is wonderful and arrange for him to have 1.5 hour walk when at the daycare, they have volunteers who come to walk with Nick. It is great for him in the moment. And a lovely day named Lady comes once a week to the daycare to walk with Nick. I am so grateful the daycare goes beyond the norm for him....
    I know I have been extremely lucky in how things have gone for us. I watched the BBC report last night on two selfless carers who were just amazing in their love and devotion. I pray as Nick becomes more debilitated I will be able to meet the challenges. But I am a believer in doing my best to be ahead of any crisis, but trying to have the necessary in place.
    You have a lovely Christmas too.

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