wings and things

How to unfold a day

on May 25, 2012

Anthony was home for most of today and, for a couple of hours, he was okay and mobile and trying to do some jobs, and he and Son got the Aga lit. Eventually! Teenagers (Son) and geriatrics (Husband/Anthony) don’t always agree on these things. And, it struck me, as I withdrew from their Aga-lighting tiff, how amazing that my two ‘boys’ – this father and son who look exactly like each other but who have an age difference of nearly 60 years – can communicate at all.

After a lunch of doner kebabs, which Anthony used to love but couldn’t manage because his hands don’t work so well any more, everything went a bit downhill and Son withdrew as Anthony became more and more crippled up. His morning drugs for Parkinson’s seem to work well, but by early afternoon it became a predictable downhill slide and by 4.30pm he was more than ready to go back to the nursing lodge.

None of the things I had planned eventuated. I wanted to show Anthony the latest blogposts, which he usually loves, but he said he was too busy for that even though he was just sitting in the armchair near me, drinking a cup of tea. He wanted to sweep some of the bird crap away from the back door, even though Son and I had already done this, so I walked him outside very slowly with his walking stick, saying ‘1,2,3’ which usually gets his legs working. Eventually I put the straw broom in his hands and told him that if he fell over I would kill him, and left him out there to try. And while I watched through the window, he did a little bit of a sweep and then froze, head down, unable to move; this is Parkinson’s.

On the way back to the nursing lodge, Anthony was a bit incoherent and seemed to be having another ‘turn’ but then he suddenly said, “Jules, when you bring me home tomorrow, can’t I stay the night?” and I had to, once again, say it was too hard, he was too heavy etc. He accepted this and my guts twirled with how horribly humiliating for this man who used to be such a macho machine to have to ask me if he could sleep in his own home.

So, tonight, having rung Anthony to say goodnight, and having fed Son who is now milking cows again for the beautiful neighbours, I am unpleating the day and wondering if I could have done it better, wondering if I should be crying, wondering and wondering and wondering….

51 responses to “How to unfold a day

  1. Sounds like you’re coping very well under difficult circumstances. I admire you for not making excuses or “lying to be nice” to Anthony. He deserves that consideration – to be told the truth – when he asks about staying overnight, having forgotten from last time why that has become impossible. Hard for you, but better than trying to fool a man who deserves honesty. You’re doing fine.

  2. Greisy says:

    You do a wonderful job at bringing your family together in the face of adversity. Be encouraged!

  3. I know your love stories are always set in the past….but this is also definitely a love story. Parkinsons is a horrible desease, one I never really knew much about until I started reading your blog.

  4. pixilated2 says:

    Julie, You are doing the best that you can, and that my friend is all anyone can expect.
    xo, Lynda

  5. melissakoski says:

    You’ve written so beautifully about replaying a day and wondering how it went and could have went. I do that every time I see my extended family.

    I think you’re doing better handling your life better than anyone else I know would be handling it.

    I absolutely love seeing seeing team Teen and Geriatrics together in photos since they do look alike.

  6. you are so brave – and this is so hard – be proud of yourself–many would not handle it as well as you seem to. you are in my thoughts- and telling your story helps many–I hope you realize that–we all wonder if we are doing the right thing, or all we can–you are putting it into words for us

  7. Robyn Lee says:

    Julie you truly are unfolding each day with more grace than anyone could ever imagine given your plight. You are also teaching others what this challenge of caring for a loved one with Parkinson’s is all about, which is remarkable in and of itself. This is a mirrored love story, I agree. Keep reminding yourself that ‘ your best is good enough.’ You are doing a tremendous job… I admire your strength and honesty more than words can say. Sending lots of love to you.

  8. terry1954 says:

    i think bringing him home where he could spend some special time with family, helping him to sweep, and loving him was more than anyone could ask for. you are a good woman!!

  9. Lee says:

    Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble. (Matthew 6:34 NKJV)

    Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. (2 Corinthians 12:8-10 NKJV)

    I’ll just let the Lord’s Words sooth your heart.

    Love in Him,

  10. Lee says:

    misspelled – Soothe

  11. cuhome says:

    I love hearing you use the name Anthony, and I love that you keep trying, and that you keep doing the best you can–which is pretty awesome, even though I know it doesn’t feel that way. Parkinson’s is a cruel disease. You are Anthony’s true love, Jules. This is love. ♥♥ Janet

  12. dcwisdom says:

    I watched my mom be downright angry with Dad – angry that he was sick, angry that he couldn’t function, angry that he was slowly leaving her, angry that he would never be healthy again, etc. And there wasn’t anything she could do but watch. And the guilt she carried was horrendous. Parkinson’s is a cheat of life. It’s totally unfair.
    You’re doing what you can do and making decisions that are fitting. We did the same with Dad. Stop second-guessing yourself. Let your decisions stand. And have a good cry, my friend.
    Big love to you.

  13. Judith Post says:

    What a lovely, poignant post. My mother, with her Alzheimer’s, is often unpredictable. Sometimes, when I visit (which is rare. It makes it so much harder on my sister who cares for her, because Mom always gets mean with her when I’m there), Mom is my mom. She remembers me and that I’m her oldest daughter, married with two grown girls and two teenage grandsons. Sometimes, Mom lives on Bowser Avenue with her mom and dad, and she’ll get in trouble if we talk past her bedtime. And sometimes, she’s plotting a great escape from the room my sister’s set up especially for her, and she’s going to flee northwest at night because no one will be able to follow her then, but she’ll send me a postcard when she finds a good hideout. And sometimes she simply rages against anyone and everything. I never whom to expect. And I often don’t make her happy. But she knows that I love her, and so do my sisters, and there comes a time when that’s all you can be certain of.

    • jmgoyder says:

      I love the way you describe your mother’s stories. That was what my book was about – Alzheimer’s Disease and storytelling. It wounds like you and yours are doing the very best you can – not easy. Anthony has the beginnings of dementia associated with Parkinson’s so I know what is coming next.

  14. niasunset says:

    You are doing great, and you are so nice too dear Julie, Thank you, love, nia

  15. ceciliag says:

    You are doing all you can, in extraordinarily difficult circumstances. Take care honey. c

  16. I think that whatever you do is fine. Only you know how you feel. There can’t possibly be any “shoulds”. Feel your way and do what you can. Hugs again across the miles.

  17. bluebee says:

    Such terrible heartache to watch him suffer like this

  18. dou dou says:

    I think it is normal to get mad at people we love when they’re in a bad spot and we can’t help them. I know I do. It’s very frustrating to see someone you love suffer. 😦 Do your best – it’s good enough.

  19. You’re awesome. With a capital A; and i find beauty in how you respond to Anthony, how you and Son are always quite there, quietly, not the really big flashy neon signs, in how you chose to give the why-me routine a miss..
    I don’t truly know how you feel, but yep, we’re all here for you: listening and trying to make it better in whatever ways we can. 🙂
    Don’t push yourself too hard, though.

  20. I love that phrase – “unpleating the day”. That is certainly a good way to describe it.

    • jmgoyder says:

      I read an academic paper once that talked about unpleating life but I can’t remember who the author was so I am probably guilty of plagiarism here – ha!

  21. victoriaaphotography says:

    Ditto to Lynda’s words. You are doing the best you can.

    No-one can do better than their best, no matter how hard they try.

    You have to stop feeling guilty for a situation which is out of your control. You didn’t cause this Life Situation. You are just a bystander (who wants to be a part of the action in the Life of the One you Love). So in being part of the action, accept that your role has changed. Before you were the Physical, Mental and Spiritual Carer. Now you are the Mental and Spiritual Carer.

    I think 2 out of 3 is a brilliant score.

    • jmgoyder says:

      Thanks Vicki – I guess I just get a bit sick of being seen as heroic when I’m not. Jx

    • jmgoyder says:

      Actually I just reread your 2 out of 3 and that is very helpful because now I can concentrate on the other 2 instead of struggling with the impossible 1 – many, many thanks V!

      • victoriaaphotography says:

        You’re most welcome Julie.

        I genuinely feel for you as I know I would feel exactly the same as you (if placed in the same position).

        Now that the physical care is beyond you (& Son), you get to engage more fully in the other two aspects.

        Just being there, thinking, caring, talking, laughing, accepting, loving….that’s your role now.

  22. Finn Holding says:

    Hello Jules, I don’t normally comment on your posts about Anthony because I worry that anything I say may seem trite or, even worse, patronising. But I want to say that the way you cope and stay strong (and sane), day after day after day, is absolutely incredible. He’s a lucky man to have you fighting his corner!

  23. Paws To Talk says:

    Sorry we have been MIA this week. It sounds like you did all you could.
    Bella and DiDi

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