wings and things

The Anthony story: Chapter 1

on January 6, 2017

Having decided to write a book about my husband’s Parkinson’s disease dementia (PDD) and how our son and I have dealt with Anthony’s condition, I reluctantly went back to blog entries.

My reluctance was only due to the fact that we are now coping well, so I didn’t particularly want to re-visit the traumas of Anthony’s escalating disease, his admission to the nursing home, and the hearbreaks of that era.

Nevertheless, I did go back in time, via my blog, to discover that during the December of 2011, Anthony was in a Perth hospital for the third time, with a specialist trying to get his PD medications ‘right’. Not long after he came home, he had what I now know was a TIA (a mini-stroke) and I called the ambulance. The hospital experience was frightening as Anthony became totally disorientated.

As Ming was due for major spinal surgery for scoliosis in early February, we gratefully accepted the respite room, at a local nursing home, for Anthony from the 4th January, 2012. This was a godsend as I knew I could no longer leave Ants alone on the farm and I needed to be in Perth to look after Ming post-op.

On January 24, 2012, Anthony’s respite room became available permanently and we had a week to make that decision. Even thought it was a mutual decision, between Ming, Anthony and me, and we all agreed, the pain of this decision was ghastly and, for me particularly, agonising.

I wish that I had known then what I know now, about how to make this experience better. Back then, Anthony wasn’t as confused as he is now with Dementia, so he must have felt abandoned regardless of how many hugs and words of comfort I gave him.

Today, he removed my hand from inside his and carefully placed it on his table.

“Why did you discard my hand, Ants?” I asked

“I thought it might need a rest, Jules.”




15 responses to “The Anthony story: Chapter 1

  1. I hope you do stay with it and write that book. Your posts have been some of the best (poignant, intelligent, funny, oh so sad, etc.) posts I’ve read and you give one of the best fly-on-the-wall views into what it’s like to be living with PDD. Love, Paulette

  2. judyrutrider says:

    “Like” doesn’t adequately express what I feel when I read your blog. I’m reminded how intertwined pain and pleasure are.

  3. Julie , I think you have been very brave to document all that your family is experiencing

  4. susanpoozan says:

    Well done for going back. What a lovely comment that final remark was.

  5. Putting a loved one into a nursing home is stressful, often it is the only option, I was going to say best thing but that doesn’t sound right it may be for the best but for many if there was another option they would take it, it can be heartbreaking and know it is the best place for a loved one to get the type of care they need doesn’t make it any less stressful.

  6. Vicki says:

    It must have taken extraordinary courage to make such a decision back then and I well remember your posts at that time.
    It was not a decision taken lightly, but with great love and consideration of the trials that were to come for all 3 of you.

    How to know when (one must move on to that step of Nursing Home) is something that needs more than a chapter in your book.

  7. Sometimes he makes such ‘deep’ comments…. Diane

  8. It must have been an agonizing decision for you … the right one though.
    your love for him shines in your writing

  9. ksbeth says:

    i think it’s good to look back at times, to where we were and how far we’ve come, but parts of it are sad, i know. the good is that you have learned how to better cope with what is happening and may be able to help others with what you’ve learned.

  10. Glad you have started with the writing and still sharing with us. I imagine that there may be breaks, occasionally.That last bit with Anthony and you just made me laugh out loud.You help so many, and it will be a benefit to so many more when they read the book.Though I do not know anyone with Parkinsons, your stories help me to see things in a different way, to feel compassion for others, to see the humour in the serious mometns. Truly life-giving.

  11. Judi Lynn says:

    No one gets things right the first time around. That’s why your book will help so many. They can learn vicariously through you. The story about your hand is lovely because your Anthony is such a wonder.

  12. Lynda says:

    Your journey begins, Julie. There are no time limits on getting it written and each paragraph put to type shows your dedication and love for Anthony. You will help many through this effort.
    Love you, ~L.

  13. I could really feel your pain in this and the decision to place in a nursing home. We are living this right now. My children are very out spoken about their thoughts on the subject. The children all say Dad will never be placed in a nursing home but I am just not sure how long I can continue to be a caregiver 24/7

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