I Love This Forum But...

Discussion in 'I have dementia' started by Arthur ASCII, Sep 14, 2019.

  1. Arthur ASCII

    Arthur ASCII Registered User

    Jan 17, 2019
    26
    Male
    Northamptonshire, UK
    I have Alzheimer's.

    I'm on the slippery slope, but still "compos mentis" enough to participate in forum discussion.
    One thing that disturbs me though, is reading the harrowing accounts of carers that pepper this forum and make me despair about the trouble I may be further down the road on my journey into dementia.

    Is there any way to seperate the practical advice and discussion amongst sufferers from similar discussions amongst carers?

    Sometimes, I am quite distressed by the things that I read, as I do not want to be a burden on anyone :(
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,921
    N Ireland
    Hello @Arthur ASCII.

    Your post has highlighted one of the reasons I have never encouraged my wife to read/join this forum. She has often expressed the same feelings as you, that she doesn't want to become a burden. I know that she would think the worst if she read too much about dementia.

    I tell my wife that nothing is inevitable about dementia and that nothing she does read may happen in her case. I also tell her that she will never be a burden, that she is my wife, that I love her and that always 'I've got her back'. I remind her that the roles could have been reversed and that she may have willingly become my carer in such circumstances.

    Please keep posting for support, but don't let imaginings trouble you as they may never come to pass.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,022
    Yorkshire
    hello @Arthur ASCII
    trouble ... I must say I never thought of my dad that way, and definitely not as a burden ... I loved him and my mum, still do, and would have done anything to support them ... were there challenges, yes, and sadly times of distress, but that's part and parcel of life, ... I simply thought of all my dad had done for me throughout my life and, if you want to use the word, how much trouble he had taken from me and for me ... put my looking after him in perspective .... I was lucky, I had kind, caring parents; I hope he felt he had a kind caring daughter ... sounds daft, maybe, but I was proud of how he lived his later years and humbled by how much he trusted me

    as to DTP ... your post is in this forum, maybe only read other threads in this forum which is particularly dedicated for those with a diagnosis themselves
    though please know that your conftributions to other forums are very much valued
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,567
    Kent
    It would be wonderful if it could be done @Arthur ASCII but I doubt even the most sophisticated of systems could enable this.

    My husband did not know how to use a computer, nor did he know how to use a washing machine. ;)

    He knew about Dementia Talking Point but only what I wanted to tell him.

    It was a much smaller enterprise in his day and everyone knew him and knew of him and he was well supported by proxy.

    I just want you to know I never considered my husband a burden even though we had many challenging moments and I suppose it was easier for me that he wasn`t computer savvy so I could speak freely and he wasn`t hurt by anything on the Forum.

    If you read anything from a specific poster which you find upsetting, you can put that person on your ignore list and perhaps protect yourself in a small way.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,851
    Female
    Scotland
    I’m possibly one of the people writing about difficult times but that doesn’t mean that I ever stopped caring about my husband and wanting the best for him. I just wish that he was capable like you of discussing our situation.

    You keep being positive and contributing because we need to hear that too.
     
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,020
    Nottinghamshire
    I never thought of my mum or dad or aunt as being trouble. Like Shedrech I had a loving family and they supported me through childhood and well into adulthood. I was happy to look out for them and do what I could to help, although it saddened me to see them so poorly.

    I can see why some of the posts would upset you but I cared for 3 people with dementia and all of them were different.
    Try not to think the worst - it may not happen.
     
  7. Thethirdmrsc

    Thethirdmrsc Registered User

    Apr 4, 2018
    66
    Hi @Arthur ASCII i do find some of the posts depressing, as it highlights what can be further down the line, for the Carer and the PWD, but like the others, it’s not a burden to look after my husband, and I would never walk away. It could have been me, and as he’s a bit older than me, he wouldn’t manage if the shoe was on the other foot. It’s certainly not a joy either. But I will look after him with dignity and love until I can’t.
     
  8. Lawson58

    Lawson58 Registered User

    When I check into Talking Point, there are several forums that I don't usually read and rarely contribute to, as I concern myself with those that have relevance for me. I know a lot of people post Poems which are read by many people but not by me and there are other forums I avoid.

    Sadly it is inevitable that forums for carers are going to be dealing with uncomfortable subjects so I would like to suggest that when you are on Talking Point, you give those forums a wide berth. There are so many carers on TP and we really do need a place to express our concerns.

    None of us want to be a burden as we age and it may not necessarily be dementia that forces us into care. My husband's heart failure requires more caring than his AD and often it is mere frailty that demands care for many. You happen to be one of those facing a big unknown and I wish you well.
     
  9. Dunroamin

    Dunroamin Registered User

    May 5, 2019
    24
    I understand you completely @athurASCII having been diagnosed earlier this year with Alzheimers. From your moniker I assume you are a computer guy, whereas i am a medic. This enabled an extremely early diagnosis as I was aware of what I was experiencing. This is a triple whammy in a way as services are 1. not geared to me at the moment, 2. people often think there is nothing wrong with me, 3. and I am aware more than most what my future has in store for me.

    Neither do I want to be a burden and as a fiercely independent individual this is the most worrying for me. This is reflected in my both my LPA and advance directive documents

    I cannot advise you on what to avoid in forums as because I am comfortable reading them all even if I rarely contribute. Keep posting and I wish you well.
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,106
    I am one of those who frequently vent my frustrations at the system, disease & my PWD; but no matter how traumatic or horrid these posts can seem - please know I love my parents no matter what. I want the best for them, I want dignity & respect for them.
    When posting I’m usually at the end of my tether, so to speak. I am emotionally exhausted & vulnerable, at times irrational!
    Positive Posting Thread Perhaps @Shedrech @Grannie G an option?

    I’m sorry that you have been distressed at posts, but please take heart that those on here are looking to do their best for the PWD & it’s the PWD welfare & wellbeing that always is a priority. It’s unconditional love mostly, no matter how hard a read it is.

    Take care, your input into how this disease affects you helps put perspective on this disease & how carers can help you live a fulfilled life.
    (( hugs)) to you both
     

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