never be made to feel ‘too young’ to appreciate the grief of dementia

Discussion in 'Younger people with dementia and their carers' started by KRS, Oct 17, 2019.

  1. KRS

    KRS New member

    Oct 17, 2019
    What feels like years ago now, I bullishly dragged my what then seemed like a rather young father into a GP’s office on account of a few (what I believed to be) post-retirement, wine-induced wobbles. I guess my confidence was fuelled by my naive belief that a) he was too young to be diagnosed with dementia and b) I was too young to lose my father.

    I took him in thinking my acknowledgement would somehow shield us all from any actual diagnosis: an infection maybe, a manifestation of old age, a dodgy opticians appraisal, anything... He was 68, and I 27.

    Almost 5 years on, with what has been the hardest journey of both of our lives, we’ve entered the denouement. And no one tells you how it’s going to be. First it was the spatial, then the short term, and so on. More recently linguistic, what once bonded us as best friends. We all experience dementia differently, and through the groups I’ve taken him to over the years I’ve never met any carer less than 20 years older than me. Not to say I don’t learn and appreciate from those I’ve met, but sometimes (guiltily) I feel as if whilst others are in tandem with those they are losing, Ive had no choice but to give up part of my young life. It’s only recently that I’ve felt this way, now he doesn’t remember me, sometimes fears me, sometimes cries for his mother, only now I wonder if all of it was in vain, to have poured so much of my young self into a vacuum that’s taken him and inadvertently started to take me.

    I miss him, but I also miss me, and I’ve started to realise that what once was a valiant gesture to look after one who was once so pertinent and powerful in my life, has become my epitaph, my life, my only purpose.

    Caring can feel so powerful when you feed your strength to another, but it can also feel like as a carer you are reliant in your own role after so many years. Has this defined me as opposed to being a supporting role? Who am I? I barely even know anymore.

    The main struggle I contend with now as things become so menially demanding (such as toilet, 24/hr care) is when to make the call to ask for help, and how on earth to regain a sense of self after such a prolonged period of care. If anyone can shed light on it I’m so so eager to hear it. The thought of passing my father into someone else’s hands both terrifies and mortifies me, as if it’s a failure, but I also know how ridiculous that sounds, as I’m probably the least qualified person to cater for his needs in these later stages. I’ve found that the care homes close by have varied reviews and I don’t know how my father would fare with going from being out into a larger environment, alone, and how could my conscience cope with such a delegation? Guilt abounds, preemptively.

    Apologies for the rant, I’ve never spoken on a forum like this, and I guess the anonymity allows for a free flow. I guess with other ailments there’s either a definitive loss or recovery, or in terms of level of care, that similar to the needs of children. But children grow and recognise, so I say there is no comparison. We are alone together.
  2. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    South Northwest
    'We are alone together'. Wise words.

    There's never any need to apologise for a rant here. Only the most fortunate among us will have no idea how you feel. Sometimes I think the only thing keeping me going, especially at this time of day, is an internal self-combustion engine fueled by bitterness and Jaffa Cakes.

    I'm not sure which is worst for me. My head says bitterness. My belt says Jaffa Cakes. ;)
  3. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    I think we walk as stranger's in a strange land, this thing that is dementiia, as carers, we may travel along a different route with our PWD but the end of the journey is the same for all of us.

    Raising and nurturing children is a joyous experience, and children carry us with them to their future.

    Caring for a PWD is very different, and yes, the illness (not the person) can suck the life out of you, at whatever age you are. There is no bright future ahead and the hardest job of all is garnering the strength to continue supporting this vulnerable grown-up.

    Don't question your past decision's, they were made in your father's best interests at that time, and what is done cannot be undone.
    Take pride in what you have accomplished up to now but face the fact that maybe your father needs more than you can give.

    Dementia meanders and chooses it's own path of progression, but reading your story, it seems as if you know yourself that the time has come to seek the next step, for both of you; accepting and then taking action is the difficult part.

    No-one will care for your dad the way you do, the intimacy you share, the treats, the private jokes, the personal touches. You will miss those gestures more than your dad who maybe needs the security of 24 hour care, which you know deep down is more than you can give, don't deny your father the dignity and professional care he might need from now on.
    That doesn't mean that you wash your hands of the situation, rather, you continue in the same vein, visiting often and supplying the special touches that only you know he enjoys. No-one will take your place, your relationship will remain intact, but at the back of your mind is the comfort of knowing your dad's needs are being met.

    Other people on this forum will happily offer ideas for seeking out specialist care (my mum lives with us and her dementiia hasn't progressed beyond early stage, so we are not CH savvy - yet!).

    Your next step surely, is to secure the best possible care for your dad and just as importantly, think about yourself.
    Acknowledge and be mindful of your role as a dutiful daughter; it has shaped the woman you are now, you cannot go back to who you were, and, given the choice, would you want to?
    For the past few years you have cared and coped admirably for your father and your life has been the richer for that shared experience, and that in turn will support you onward.
    Keep posting your thoughts on this forum and you will gain immense strength from the many, we are alike.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Such a supportive and loving observation @KRS.

    Sadly it looks as if you are realising the time has come when strength, love and support is not enough and we need help to meet the needs of the person with dementia.

    I remember insisting I could do it alone and I can also remember when the reality hit that I couldn`t.

    You didn`t rant and there is no need for an apology. Dementia Talking Point is here for all of us. We cannot share the physical caring but we can share the emotions and trauma of caring. Even though we are probably all much older than you in years, we are on a level in experience.
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    Another way of putting it is that you can sometimes feel the lifeblood in you being sucked out, as every time you feed your strength to the other it takes a little bit more out of you and it takes a huge effort to keep your sense of self. Just giving to the other person is life enhancing as well as life limiting so keeping the balance seems to be the key. Not an easy task with this disease. I have little tactics to try and keep well. I must also confess that I can manage perfectly well looking after him as long as I don’t have to be with him all the time, and I don’t because he spends so much time in bed. But on his wakeful days, watching me all the time, asking me what I am reading, what I am doing, where am I going, is soul destroying as if he is trying to live his life through me and in the process sucking me dry. But I keep battling on.

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