wings and things

Five seconds

on September 22, 2014

Today, I experienced, for the first time, five seconds of what I always knew was inevitable. For five seconds (and I know it was exactly five seconds because I kissed Anthony five times – three on the nose and two on the forehead – all in quick succession, to remind him….)

It’s me – Jules!

A syllable for each peck of a second.

This is the first time Anthony hasn’t recognized me and, even though it was only five seconds, it is good to have had that little taste of forewarning/arming because I still have time to develop some tactics and hopefully some wisdom.

When I told my mother about the five seconds of unrecognition (yes, ‘unrecognition’ is a word – I checked) she squeezed my hand but I quickly reassured her that I was fine with this first of what will be many unrecognitions. (It’s kind of weird being comforted by your 79-year-old mother about your 78-year-old husband!)

In what I think will be the near future, the challenge for me will be in how to reassure Anthony that I am indeed Jules, his wife, without embarrassing him. I know this because lately he asks a lot for his mother and many others of his family who are now deceased. Sometimes I say they are all well but very busy but sometimes (for example if he is distressed, as he was for his mother again the other night), I will gently remind him that she is gone.

I was thrilled today to have a conversation with a friend of mine, Ann, who now works as a clinical instructor at the nursing home (she and I both left our jobs at the university at around the same time). Ann told me that she has been showing all staff, including domestic staff, a DVD about Parkinson’s disease that explains, among other things, why someone with PD can sometimes walk, and other times be totally unable in which case encouraging words are useless. Interestingly, the DVD also explains why a person with PD may not respond to a greeting, and therefore appear to be unfriendly. Ann told me that she pointed out to the staff that people with PD need time to process the greeting and should, instead of rushing past with a “Hi Anthony!” and disappearing, wait for his response.

After all, it only takes around five seconds for Anthony to say “hi” back.

On the other hand it only took one second for Anthony to say “Rubbish! Throw it out the window” about the cupcakes I made for him last week!

The kiss Yes, I know I’ve posted this photo before but I love it!

27 responses to “Five seconds

  1. The picture made me think of you and Anthony. πŸ™‚ Cupcakes rubbish? I think not. There is always something salvageable in a cupcake. πŸ˜‰

  2. Rhonda says:

    One of your best bird pictures…1,000 words. I marvel at how far you’ve traveled on this journey Jules; at how each time you come to a cross roads, you turn and face the harsh winds of reality even though it bites and stings…with a strength born of true love, commitment, and (stubborness?) all the while, leaving a trail of wisdom for others to follow, and learn from your experiences. Have I told you lately that you are my hero? My perfectly non-perfect, emotionally present, fiercely loyal, completely human, and utterly lovely, hero. (hush…don’t argue) xoxo

    • jmgoyder says:

      I am so behind with catching up with your own posts, let alone others’ and yet you give me this wonderfulness, Rhonda. I am soooo grateful for your presence is my life xxx

      • Rhonda says:

        You are not behind. We all know you’re there…and we just look forward to your visits whenever you can stop by. No worries my friend. And I’m glad you like having me around…cause I’m afraid you’re stuck with me. πŸ™‚

  3. Lovely photo, Julie. Reading about the non recognition, I really felt for you. Hugs to you. xx

  4. Terry says:

    I hate it that you have to go through this part of PD. That was a big difference in Al’s illness and Ants. Al never lost any memory. He suffered more with having his memory because he felt stupid and foolish knowing that he used to be able to do so much more. In little ways having no memory protects the patient. I don’t know if this makes sense to you or not. I know now after the fact, that I wish Al had lost his memories

  5. elizabeth says:

    Jules, I found that being face to face (close) to my mother and singing a few funny songs brought her back to me. If no one gets that close and determined my mother remains lost inside.

    Your five kisses are a beautiful way to bring Ants back to you. And I’m so glad Ann shared her DVD and knowledge with the staff and family. Every bit of information helps make life better for our loved ones and us. Thanks for sharing. ((hugs))

  6. ksbeth says:

    oh, i remember this feeling well, with my mother. the social workers told me at the beginning, that it would come, but to remember that the person would recognize us as someone they care for or who cares for them, but not be clear exactly who we are. and in the end, after getting over my initial shock, i knew that the main thing i wanted was for her to know that i was someone who cared about her, regardless of my name or who i was to her. very challenging at time to remember though –

  7. (((HUGS))) to you and Ants and five seconds of kissing! Love the photo of the kissing birds. ❀
    Diana xo

  8. I guess it IS a learning process for you… a ‘stage’ at a time. You seem to understand this so well and able to adapt… (for the most part) Not easy I’m sure. ………….. Diane

  9. Trisha says:

    I’m glad the five kisses brought him back to you and great job on making those five seconds so much better than they could have been, giving you both time to process. Love the kissing birds!

  10. Is that Gutsy on the right? Nice photo.

  11. tootlepedal says:

    There’s no excuse fro rubbishing your cupcakes. That’s a step too far.

  12. Tiny says:

    You’ll come up with a strategy for everything, on time. You are just wonderful.

  13. I’m so glad you were somewhat prepared for this eventuality, but sad that it has begun to happen with Ants. I can’t imagine doing what you are doing, and doing it so well! You are quite amazing.

    Love the peacocks ‘kissing’.

  14. It must have been a long five seconds for you.
    So glad you spent it kissing.

  15. It is sad when they stop recognising who you are, but as I always say I remember all the great times I had with my nan even though she doesn’t remember

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