A Frank And Open Message:

Discussion in 'ARCHIVE FORUM: Support discussions' started by connie, Mar 1, 2007.

  1. connie

    connie Registered User

    Mar 7, 2004
    I say ‘goodbye’ to my brother this weekend, he is off to start a new life in New Zealand, with his wife and two sons.

    It set me thinking. Some years ago he would not have contemplated this because our mum was still alive. She died of Parkinsons Disease, and at the end was not making much sense of life.but she would have been all for him going and making a new life.
    I got to thinking how this translates to someone involved with AD. My lovely man now can no longer make sense of anything, who he is?, where he is? nor who I am.

    I guess what I would say is: If you can do what you will, without deliberately hurting anyone….go for it. How awful would it be to deny your own future, for the sake of someone who will not even remember.

    No…….I am not about to leave dear Lionel this is not my problem,, but it has set me thinking about some of you out there. We are all only blessed with one life……..Our parents lived it ‘their’ way……we have to live ours, in relation to our families. I am not proposing that we all abandon our loved ones……………….but I would ask some of you to consider where you are, and what the future really holds.

    My very best to my Brian and family…………..and to all my friends on TP, “do what is right for you." Each and every one of us only have one life.
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Connie

    What a lovely sensitive message.

    I have been thinking since I joined TP how hard it must be for the younger ones caring for a parent. It's not something I had thought about before. I cared for my parents until their deaths, but didn't have dementia to contend with.

    We 'seniors' have the agony of watching our loved ones slip away from us, the loneliness of coping 24/7 with someone whose conversation is limited, to say the least.

    But the younger ones also have a family to care, cook and wash for, and in many cases a job too. Add to that the anguish of not being able to give chidren the attention they need -- not to mention the partner.

    I don't know how they cope, and I agree entirely that they should not sacrifice everything else to care for a parent who may not remember who they are.

    Thank you for bringing this up, Connie, I think they need to know how much we admire them.

    All the best to your brother and his family. Hope you won't miss them too much.

  3. Irish_Lisa

    Irish_Lisa Registered User

    Feb 24, 2007
    A very beautiful message Connie, it was obviously emotional writing it. :) I understand totally what you were saying, but while I understand I have to admit that I was that person you were talking about. My life was on hold for granddad (he had VD) & if I had my time with him again I just know I wouldn't do anything differently. Guilt is an emotion that doesn't sit well with me & I guess I'd do anything in my power to ensure that I didn't have to feel it. I don't even know if that makes sense but I know what I mean! :)
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    #4 Margarita, Mar 1, 2007
    Last edited: Mar 1, 2007
    I am always doing that , it go around in my mind like as A circle then when you say

    I think I would do that when my mother does not recognize me , I ask myself why I think like that it could be because I would feel to guilty :confused: . I wish I had it in me to do that , but I can't its just not me . I can see your point
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Connie,

    I appreciate the heart searching of your post. You must have thought long and hard before posting.

    It`s almost impossible to decide the `cut off` point. The emotions of guilt and
    resentment fight for supremacy.

    I feel we can only do our best, in difficult circumstances, be answerable to our own conscience, and not feel it necessary to make excuses to anyone.

    I hope your brother and his family have a wonderful new life. I admire their courage.
  6. connie

    connie Registered User

    Mar 7, 2004
    Hey guys and gals, I do not ask you to make decisions, or ever question what you do so willingly.

    It was idle speculation.. He was never asked to make decisions, but I realise some of you out there are in that difficult area.............do you base the rest of the whole of your life governed by this illness?...............or do you have the courgage to go on regardless. If you can do it without causing harm, you do owe it to yourselves. OMOP. love,
  7. Áine

    Áine Registered User

    best wishes to your brother and his family.

    what you say is so true Connie, we do only have one life ........ and it's frightening how often we can get caught out thinking that this is only the dress rehearsal.

    i think it's very important to think about what we do ...... even if it's only to decide again to continue doing it.
  8. bebee.

    bebee. Registered User

    Mar 24, 2006
    usual dilemma

    too busy lately to get involved with messages in detail, but just to say this vile illness has totally wrecked the lives of the wife & me. we have no future .,few friends & a rapidly disappearing family .After over 3 years of absolute hell things are still worsening ; we are sliding towards obscurity . who else cares ? - to be honest ; nobody ! I may sound paranoic , but having been in psycho-geriatric nursing for many years this disease means victims and carers are virtually rejected by society . the term " lip service " springs to mind . in my case there is no cut-off point ' apart from the inevitable one . Sorry to be so verbiose ; best wishes to all of you. the battle goes on !! logging off for a few months .
  9. connie

    connie Registered User

    Mar 7, 2004

    Beebee, hope my post did not upset you, that was not the intention.

    Can only but try to understand how you feel. If you think it would help please PM me. My thoughts with you and your family.
  10. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    This post has given me food for thought. I'm looking after my mother on my own without any family support at all. Thankfully she is still in the relatively early stages. This disease has taken over my life completely.
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    #11 Margarita, Mar 1, 2007
    Last edited: Mar 1, 2007
    I think it’s a good issue you have brought up connie . yes Food for thought Sunlight.

    For me I don’t feel it’s the disease that’s the problem, it’s the support the low priority that society local authority give, see dementia. Why should we feel that we have given up our life? For me I tell you why because I can not get the funding and yes it all boils down to money and funding, Founding for my mother to live at home with me while I get a full time job and get a life.

    The only way I can do that is to put my mother in a care home no way to finger up to the government. I was lucky that I had my children, my relationship of 19 years had finish , so I did not have to put my energy into keeping a man happy while I also wanted to care for my mother , yes I got depress careing for my mother because I am sick tried of fighting a losing battle , that I feel I to have beg , so feel guilty in trying to get the support from my local authority or should I say the NHS .
  12. allylee

    allylee Registered User

    Feb 28, 2005
    west mids
    Connie, thanks for that , you moved me to tears.
    Today has been a bad day, and I so relate to all the responses to your post.
    Caring for a family member with AD is a huge self sacrifice which eventually takes its toll.

    Ive lost perspective and my ability to be rational today, but all of your wise words really inspire.
    THanks and love to you all
  13. Amylena

    Amylena Registered User

    Connie, your message also moved me to tears.

    My boyfriend is 24, his father passed away 3 weeks ago, and since then his mother has gone downhill fast. Your sentiments are something a lot of people are trying to get across to him that he has his own life to live, in the nicest possible way.

    I dont want to post all my stuff about my boyfriend here, ill post in elsewhere but i just wanted to say im glad someone else thinks like that. Amy.
  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Absolutely, Áine......and to remind ourselves that we DO have some choice (something I often ignore and just try to 'keep going').

    And thank you for the reminder, Connie ..... a very poignant and moving thread for someone who has just sent her son off to school with a heavy heart wondering how much more damage this disease can evoke throughout a family....

    Love, Karen, x
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    #15 Margarita, Mar 2, 2007
    Last edited: Mar 2, 2007
    for me as I look back , society outside my home my judge , say what they feel I should be doing with my life but as a family we have grown more stronger closer , then if I had just got on with my life and bump my mother in a care home , all I found that it evoke throughout my family we have learn seen the hard cruel remark of people, learn not to care what people think , shown me who my real friends are . And it has teach me the more down , I feel the more I can get right back up angina , even if I was caring for my mother or not . we can all feel negative in life , but the positive (for me ) always wins
  16. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Connie and Karen,
    Firstly, thank you Connie for your bravery in making this posting, and reminding us that there are choices.
    but also remember the love and strength that it is generating Karen; and the understanding of dementia and 'difference' in your son. Keep looking for the positives - that way, we win.
    Love Helen
  17. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Connie

    Thank you for posting this beautiful message. It's very thought provoking. It's easy for us all to be dragged along in the wave of destruction that dementia leaves. Often, I've found myself thinking: Is this it? (for me, not mum) which is, I admit, selfish. For what of her? A life lived and (possibly) to be ended in a complete fog of forgetfulness. I have just spoken to her and will be visiting tomorrow. I'm dreading it. Every other week I drive to see her, and slowly, slowly, she's worse. But it is my choice to continue ... for how long, I don't know. It's a bleak outlook, but it's one I don't try to think about too much - otherwise, like so many on TP who are looking after loved ones, I'd feel like I'm drowning with her. I do however, hold the thought that I can't go on for ever, 'coping' or whatever the hell it is we try and do! Fate will decide, I guess. All very profound, this for a Friday dinner-time! :)

    Love to you and Lionel and thanks for your inspiration.
  18. yvonne j

    yvonne j Registered User

    Mar 1, 2007
    Hampshire uk
    what's right for you

    It is an impossible situation to live your own life. My mum died jan 4th 07, I believe she finally died from exhaustion of keeping my Dad's condition of Alzheimer's hidden for as long as she could. It was when she kept collapsing and finally was kept in hospital last May, she never came home after that, that Dad's true state was really visible. He was awake all night and when left went into town at 3.30 am to look for mum. He was hospitalized because of acute confusion due to a re ocurring hip infection from his hip replacement, he was later sectioned because of his agression and inability to understand that his family were not all young and waiting with mum at home for him. Mum was too afraid, and by this time, too weak, to even meet with him, after 65 years of a happy marriage. Dad has been in an EMI home since sept, paid for by us, self funding, while claiming without success, NHS continuing Care funding. Because he was so bad about knowing who was who or where he lived, and who was alive or dead, we didnt tell him mum had died just that she was comfortable, somehow he seemed to know, he died feb 6th.07. 33 days after her.

    In helping us with the funerals, the director said 'there isnt a right way to do any of this, its what is right for you' this helped, but this was after death. In life I couldnt walk away despite a 300 mile distance, from my mum and dad, I was there more than my own home this last year, but still, during a short visit home, as I have now discovered, the hospital where he was admitted to from the home, tied him down and subsequently sedated him during a stay there. When you walk away you leave the treatment of your loved ones to others, others who as in my dad's case just saw him as a nuisance to be restrained, you do not know what may happen to them or how they will be treated. Whatever happened on this ward, it broke my dad's spirit and reduced him physically to where he would not eat or drink. It is being investigated with the help of POVA. I was grieving over my mum and turned my attention away for a short while, he may well have 'known' about my mum and died anyway, but I will never know if it this or was because I wasnt looking closely enough at his care at that moment.

    I dont have answers. There should be far more input from the state, this generation with Alzheimer's now, were the founders of the NHS with their post war contributions, money paid out throughout their lives, but when they and their families need the help they have paid for, we are left in agonising isolation to cope as best we can.
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Yvonne, What a very sad story you tell.

    I was grieving over my mum and turned my attention away for a short while, he may well have 'known' about my mum and died anyway, but I will never know if it this or was because I wasnt looking closely enough at his care at that moment.
    It sounds from the above quote that you are holding yourself responsible. Please don`t. It`s obvious from your post how devoted you were to both parents and what a long hard struggle you had to keep them safe.

    You couldn`t have done more.

    What I find so hurtful is the apparent lack of respect shown to those with dementia. These people, as you said, were pillars of the community and deserve more.

    There is a quote, I`m not sure who from, that you can measure the calibre of a society by the way it treats its` elderly.

    I believe we have been found wanting.
  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Yvonne

    How awful for you to have lost both your mum and dad in so short a time. The treatment your dad received in hospital was intolerable, I hope your complaint is upheld.

    But your dad was not treated badly by you. You were grieving your mum, and had the right to expect that your dad would be cared for.

    It's all so fresh for you. The grieving will go on, but I do hope the feelings of guilt will fade. You have really nothing to feel guilty about.

    Keep in touch, if it helps. We all support each other here.

    Love and deepest sympathy,

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