You are all extraordinary

Discussion in 'I have a partner with dementia' started by Alicenutter, Jan 21, 2016.

  1. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    Massachusetts USA
    #1 Alicenutter, Jan 21, 2016
    Last edited: Jan 21, 2016
    I am quite new to this forum, and already feel supported and understood. I am amazed at the loving kindness that I see shown on every page by caregivers. Your patience, resilience, strength are an inspiration to me as I start down this difficult road.

    I am not sure I will rise to the challenge with as much love as you show. And the phrase that someone used, something 'we are all doing our best', resonates for me. I think I'm looking for some reassurance here that I shouldn't be beating myself up for not being 'good' enough.

    At this stage, and I have to reiterate that my husband has not been diagnosed yet, I am already afraid that I won't be able to hold it together for too long. Part of my problem is that I have no income of my own, no PoA, and am not resident in the USA, where my husband is resident. We were going to apply for a Green Card for me; he is not capable of going through with the process. We have a business in France, and we, or at least I need to go back there to run it. His health insurance is in the USA. He has family here, and some at least are ready to help out, but they don't live close by. We have friends who are being helpful, and God bless them. God bless our children too, who are both in full-time education and not close by either. They are loving and supportive.

    The peculiar (in every way!) challenge of Capgras is stretching me way beyond where I thought I could be stretched to. But I hope I'm right in believing that above all my job is to provide a calm, safe atmosphere around my husband, and intervening in any direction that I can to get him the necessary medical assessment and attention. In order to this, my priority is to somehow obtain the right to stay indefinitely in this country and then cross the other barriers as they pop up….

    When I am more used to this,I hope I will find the grace and the time to answer and support others. In the meantime, wow, ladies & gentlemen, you amaze me!!!
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    Wow. You have some challenges to overcome. We are no angels. Just ordinary people forced by life to do some extra-ordinary things. I have cried, sworecand ranted and raved many times but i just keep going. Everyday i do my best and it is enough. TP for me is a haven where i am understood and never judged. These people have walked in my shoes. They know how it is. Welcome to the fold. We will all do our best to support you. Xx quilty
  3. Ash148

    Ash148 Registered User

    Jan 1, 2014
    Dublin, Ireland
    Dear Alice,

    Welcome and hope you will find some support and advice here on TP. Yours is a more than usually challenging situation, but even were it not, the first thing you need to know is that you can only do your best and no more.

    Very best wishes

  4. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Hello Alice, you sound like a very loving and resourceful lady. You will find the strength and grace you need, although it may not always feel like it . It's important to take one day at a time and meet the challenges moment by moment.
    Having said that you do have some huge challenges. I hope things work out and you find people who are able to help you as you need it. Sending you a huge hug, always available from someone on TP.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    #5 marionq, Jan 22, 2016
    Last edited: Jan 22, 2016
    Alice, I rarely meet anyone nowadays who is a "virgin" in terms of dementia. It may be the company I keep! So many families have one or more elderly relatives with problems and early onset cases too seem to be more prevalent. So I find that people on the whole are understanding and sympathetic. The people on TP have gone a bit further and are mostly front line supporters of their relatives.

    I have learned to accept all offers of practical or emotional help on the grounds that if I don't need them at this moment I probably will next week or next month.

    You have a lot on your plate but it will eventually reach a resolution and I wish you health and strength to get there.
  6. Reallife

    Reallife Registered User

    Jun 12, 2015
    Welcome Alice, I don't post much but do read a lot and like you I find lots of emotional support on here. It's a wonderful site.
  7. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    That was such a nice message to post, and it's good that you know that on TP you are welcomed, and supported. I couldn't have coped in the last couple of years without the advice, understanding and love, from complete strangers, who have become closer to me than my friends in "real life".

    What we're all doing here is passing on the support we've received in the past, because everyone on here once lived a happy life with their partner, without the dreadful unwanted interloper called Alzheimer's.

    I wish you well. :) xxx
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Alice.

    It is something I`ve said time and time again to try to reassure myself and others.

    In discussion with a friend I realised it`s a very big ask to do our best, at all times, in the face of all challenges....... stress, tiredness, upset, heartache, changes in lifestyle, changes in relationships, changes in roles and rollercoaster emotions. How can we do our best when faced with so many hurdles. I would like to think we all do what we can, at the time, with all that is presented to us.

    With hindsight I imagine most of us could have done better, but hindsight forgets just how human we are, what devastation we live with and how we are faced with people we love succumbing to the ravages of dementia.

    `We are all doing our best` makes those of us who have lost it at times, who have not behaved in the best way possible, who have been exasperated, resentful and angry, feel inadequate. I think it better if we believe we all do what we can.
  9. marionq

    marionq Registered User

    Apr 24, 2013
    Wise words Grannie G. You could be my granny with those words but I suspect you are about my own age!
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #10 Shedrech, Jan 22, 2016
    Last edited: Jan 22, 2016
    oh marionq, the penny's just dropped for me from what you wrote
    that's why TP seems such a comfortable place to be - it's peopled with our grannies and granddads - ages don't figure; it's the wise words and even sometimes the exasperated tone and the odd telling off that matter :)
    I'm a bit slow in the take up sometimes!
    never thought I'd be a nan (no children) but very happy to be a surrogate/step nan at times and the respectful grandchild at others
    and very grateful for all the others here

    oh dear - I'm off with the fairies today - some good news has me a bit high :D
  11. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    It's funny right enough Shedrech. I am a few years younger than my OH, but because of the dementia I feel like I am her father having to look after her and protect her. Can't say I have been very good at so far, so I also liked Granny G's post about doing what we can. It is nice to be able to come on here and get some good advice and wisdom from those with more understanding.

    All the best to you all.
  12. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    I loved your post Granny G, it felt like a weight of expectations slipping off. I expect they will climb back on but I'll try to revisit your words.
  13. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    Massachusetts USA
    Me too, I loved your comment. We are all doing what we can…


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