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Thread: One Year Anniversary

  1. #1
    Forum Member
    Join Date
    Dec 2016
    Norwich, UK

    One Year Anniversary

    Yesterday was the one year anniversary of Ezri's death. I met up with her family and we spread her ashes at her favourite place in the woods near where she grew up. It was a good day, the sun was out and it was absolutely beautiful.

    There were a few regrets mentioned, and later I wrote the following. I know the specific's of this won't match everyone's situation, but take the spirit of what is written. Basically, we get much more right than we ever get wrong, and we need to remember that.


    None of us received training on how to care for someone with MND. We had never done it before, and we didnít get any practice runs or a detailed plan of what to expect.

    We all just made it up as we went along.

    Each and every one of us made sacrifices to care for Ezri. We gave up things we wanted to do, we stayed up late at night and sometimes got up early in the morning, and occasionally in the middle of the night.

    We spent more time in the hospital some weeks than the people that work there and I travelled back and forth to the pharmacy more times than I can count.

    Never forget, that we took Ezri to Stonehenge, we took her for walks with Arwen (her dog) when she was able, and even got her to Norwich Pride in an expensive wheelchair she wanted that we raised money to buy.

    We broke rules to make it easier for her to pee, and rallied every agency and support person in Norwich that we could find, including fighting with the NHS to get her adequate care around the clock with multiple double-ups during the day.

    We didnít know what to expect on this day one year ago, and the signs of what was to come were so subtle even an expert would have missed them.

    One thing Iíve learned this past year, as Iíve played the previous two years and specifically this day last year, over and over in my mind, is that we all did everything we could have done. And although itís easy to beat ourselves up with hindsight for the one or two things we wish weíd done better, letís not forget the two years of unfailing dedication, care and love we gave to Ezri.


    A year on, and life is starting to move forward. I started a job a few weeks ago that I love, and it feels great to be back in an office again and interacting with these strange beings called humans. I'm making new friends and renewing friendships with old friends. The job means I'll have money to visit my son and daughter more often too. And several other good things are happening in my life right now, and it feels good.

    I still miss my friend and think of her every day, although I don't cry as often or as uncontrollably as I once did. But still do sometimes, a little. I wish she was here so I could tell her about the job and everything.

    Hanging in there, one day at a time.

  2. #2
    Forum Member
    Join Date
    Jul 2018
    lovely honest words. So happy for you about the job. I lost my lovely Mick 3/7 , we were together 41 years, since I was 16. I went back to my job at the start of the new school term early sept. I miss him every day. Life is so very cruel . God Bless you for caring so well for her x

  3. #3
    Forum Member
    Join Date
    Jun 2018
    What a lovely post. It's so true that no-one receives training in how to care for someone with MND. I'm the one with MND and I know how much caring for me has changed my partner's life.

  4. #4
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    What a lovely post - and are able to move on.

    And I still have conversations with a person I knew very well who died over ten years ago and still have the occasional cry.

    Interesting that you did not receive any training of how to care for your partner where mine has, starting with how to massage bits of me that are not working


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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