wings and things

Predicting unpredictability

on July 24, 2015

I think one of the most difficult things for carers/families/friends of people with Parkinson’s disease, Alzheimer’s disease, or any disease that involves dementia, is the unpredictability of every single day.

Two days ago I sat with Anthony all afternoon and he slumbered the whole time away even when I punched him in the shoulder a couple of times to make sure he was alive. Instead of waking up, he just kept chuckling in his sleep – over and over again! So I just sat there next to him with my arm around his shoulder and watched TV and ate my lunch. A few hours later I informed the nurse-in-charge that he was a bit sleepy and that I was a bit worried he might have had another TIA (mini-stroke).

Me: I’m going to leave my scarf on the chair next to his, so he gets the impression I will be back soon. Is this okay with you?

Nurse-in-charge: Of course!

Later that evening, I rang the nursing home to see if Ants had woken up and the nurse-in-charge reassured me he was fine and that she’d showed him my scarf (an indicator that I would be back).

Me: You are okay with me not coming back?

Nurse-in-charge: Of course!

Okay so I have blogged about this before – this kind deception thing whereby I leave Ants to come home but always say I will be back soon. The reason I do this is because it is kinder than saying I am coming home without him.

This tactic has worked for many months. I turn up the next day at the nursing home and Ants doesn’t seem to recollect that I didn’t return the previous evening.

But today was different! I did my usual:

Me: Just going to get some groceries, Ants – I’ll be back later.

He looked at me with an expression of such lucidity that I was taken aback.

Anthony: You didn’t come back last night, Jules.

This is so weird! Today he remembers yesterday’s promise of tomorrow, but has forgotten so many of yesterday’s tomorrows that every single today is confusing even for me!

Bottom line in this kind of situation is to simply go with the flow I guess?

17 responses to “Predicting unpredictability

  1. Amy says:

    He never ceases to amaze! That one made me smile and I’m sure caught you off guard. Each day holds a new adventure for you. I hope that one day I have someone as lovely as you by my side.

  2. susanpoozan says:

    You seem to have got things sorted, well done.

  3. Colline says:

    You have to go with the flow or you will go crazy. Love those moments of lucidity though.

  4. Trisha says:

    The unpredictability would make it very hard to predict and plan for anything. It sounds like you’re doing a great job of going with the flow though.

  5. Tiny says:

    You have developed a good routine, Julie. The best under circumstances, I guess.

  6. Terry says:

    It’s all you can do, go with the flow, and always keep it in top mind, changes every day; then you will never be surprised. hugs, have a great weekend

  7. The predictability of unpredictability is manageable, but the unpredictability of predictability can really throw one off guard 🙂
    Have a great weekend!

  8. Your title says it all, wow Jules. Hugs 😀

  9. Judy says:

    It seems like not knowing what to expect keeps you in a state of wonderment. How beautiful that you are able to do that because it would be very human to look at his decline. Instead, you are looking for those moments of clarity. One of my favorite statements is, “The more you look for something, the more that you will find it.”

  10. tootlepedal says:

    Never a dull moment.

  11. Wow that’s amazing that he remembered Julie. What did you say in response? ❤
    Diana xo

  12. Vicki says:

    I had to smile at Anthony’s comment (like Amy).

    Just when you think you’ve got it ‘all worked out’, your beloved throws a spanner in the works and comes out with the unexpected. Perhaps he comprehends all your little white lies and doesn’t let on so as not to hurt your feelings 😀 Besides, he sounds like he always had a wicked sense of humour.

  13. Val Boyko says:

    Go with the flow Julie … wise advice my friend.
    Make the most of each moment as it arises. 💛

  14. Judith Post says:

    Anthony knows how to keep you on your toes:) But you’re pretty creative. You’ll think of something.

  15. Go with the flow, but boy he sure keeps you on your toes.

  16. It is weird and wonderful what the brain chooses to remember… Diane

  17. tersiaburger says:

    What a brave and loving wife you are! I salute you my friend.

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