Less than two years ago it was unthinkable that the day would come where Anthony would have to go into a nursing lodge. I vividly remember making a secret appointment with our doctor to discuss his deterioration and, after arranging Silver Chain respite help that day, Ming and I went into town. During the conversation with the doctor, he mentioned the inevitability of nursing home care and Ming, nearly crying, said, “No, we will never put Dad into care.” The doctor gently said to him, “You don’t know what is coming.”
And we didn’t. All three of us could never have predicted how bad it would get – hallucinations, immobility, stroke-like episodes, falls, loss of hand/eye coordination, confusion, nightmare horrors, sleepless nights, sleep-filled days, loss of appetite, subsequent dramatic weight loss, confusion, cognitive problems, ablutionary problems … and the list goes on. Ming transformed from a devoted son to an intolerant son and I transformed from a devoted wife to a physical and mental wreck. But I only see that now – in hindsight.
The things I wish:
- that I had stopped asking Ming to do occasional ‘night shifts’ with Ants while Ming was still at school;
- that I had discussed nursing home/lodge possibilities with Ants earlier (he was assessed as a candidate for ‘high care’ over four years ago); and
- that I had broached the subject of death with both of them earlier.
Bubble and Baby Turkey are inseparable but I think this is because, initially, there were four Bubbles and four Baby Turkeys and (except for these two) the foxes got all of them when they were littler despite my vigilance.
Ants, Ming and I were inseparable too until Parkinson’s disease began to steal pieces of our jigsaw. Ming took a few leftover pieces, went into his room and shut the door; I tried to find some of the pieces of a blue sky, but they all looked the same; and Ants never liked jigsaws in the first place.
This photo was taken a few years ago when we were inseparable.
jmgoyder 
I don’t have words for you Julie — Only hugs across the miles.
My heart is heavy for the missing pieces.
Louise, I hope you know how much I appreciate your concern and input! Jxx
Parkinson’s is a cruel disease – and illness which robs people of their memory, affect and awareness is inexplicably horrid. As moments of lucidity became increasingly rare..as my dad became aphasic, as he eyes began to confuse those he loved with those he didn’t know. But your family is transfigured and transformed – it is not broken. Love doesn’t break, it hurts, it rails, it cries – but it doesn’t break. It is what you remember, what you will rely upon, how you will move forward.
Bloody hell – what an absolutely beautiful comment – can’t thank you enough – so sorry about your dad, so, so sorry. Yes it is a ghastly disease!
I am so sorry that you and Ming and Ants are struggling with this brutal, unforgiving illness. You are all in my heart..
I really need to figure out how to cope better – not doing well at the moment but I am sure I can think of better ways – thanks Karma!
I think you are doing incredibly well in an untenable place..Just give yourself room to breathe a little and give yourself a break. For one who has such a generous loving soul, you are very hard on yourself. Give yourself some hugs, you need them too…xox
I so appreciate your comment!
I hope you and Ming are still watching the tele together each night, building the small rituals that will help you through the times ahead. c
Yes! I am right into Home and Away now – haha! Even though Ming and I both recognize this as light relief, it is a great way of connecting at end of the day.
It is, john and his emotionally damaged and newly returned son have taken to getting out movies and watching them together in the snug, i just close the door and leave them to it, they may not talk much but they are sat in the same room doing something benign together. It is a good thing. c
This is oh so familiar – you are a star c!
It’s very hard and nothing can be said to make it less hard for you and Ming but if we could say something to make it less hard, believe me, we would. Don’t blame yourself for stuff for things you couldn’t foresee though.
Tom, you really are such a great friend even though I haven’t met you. My oldest niece, Ashtyn, is getting married in Scotland next year and I just received a wedding invitation. Obviously, I can’t go but I am seriously thinking of sending Mingy over. If I do, I would like him to base himself at your place. At this point, it is just a bit of a dream but you never know! I tested this idea out with him today and he didn’t punch me so that is a good sign (only kidding – he has never punched me!) Juliex
We await events.
Indeed!
I enjoy reading your love stories.
Thanks but they are all out of sync now – argh!
Thoughts with you, Julie. Hindsight is easy, but when you’re in the middle of the situation it must be unbelievably hard. Love to you all.
I was just about to turn computer off and go to bed then saw this – you are such a lovely person, Kate – thank you. I am going to try to figure it all out again tomorrow! Jxxx
I still love your love story.. even though the outcome is not what you pictured… however hindsight is 20/20 but it appears as though you are coming to terms with the reality of Parkinson’s… and Julie one must realise the future does not bode well for Ant…but you never give up, a miracle could be just around the corner… who the hell knows… be strong and hugs to you… mental wreck or not you are still coping and that is to be admired…
By the way I just love the photos….
It is so hard to know what to wish for!
Hope you had a deep and restful sleep. Praying for a sun-filled day, that is full of the things that make you smile.
Your words are always so touching… and that last photo was icing!
~Lynda
I like the picture of you and Ants and in the ones of the birds it appears that they are discussing your blog and gathering the community together where there is the inevitable gossip but also compassion and caring..We all have the advantage of hindsight and what we would have done differently but more importantly, what are we going to do now? I like your sharing as it shows a process and deals with very difficult questions and choices which is sure to give comfort to others. I know that your writings help me, plus you bring humour into it and laughter and even the harder emotions.Writing about it keeps you engaged in the bigger picture and lets others know that they are not alone.. that is a real gift. it is good for me because when I am sick, as I am now, my mind is like a dangerous neighbourhood-I shouldn’t go there alone.My thoughts are scattered and I can’t think my way out of a paper bag.So thank you for the reprieve. and I wish you rest, good food, good health and comfort.:) Jane
What a beautiful comment – thank you very much and I hope you are feeling better soon Jane.
Julie, I love the replay – mimijk – has done. She has really mirrored your situation … you have all 3 changed in this process of Ant illness. You’re all damaged, but you still have each other, but in another shape. I hate blue skies on jigsaws.
Oh Julie – how do you ever ‘cope’ with something like this? You do what you can, you put one foot in front of the other, and you endure. And sometimes, fall apart. Later, pick yourself up and keep going…
There is no graceful way to do this – there is only what you are doing – living raw and from love.
Wishing you peace in your heart, and a connection through space and time to Ants, no matter what the weather brings.
Much love to you
♥ xx
You have it exactly right!
You’re brave to put your feelings into words, and what a blessing for others. We may have to make choices like these one day and your honesty tells us the real story of hardship and pain. We love our family members, but we have to get real about the support that we need. It’s so hard, and I’m appreciative of your courage to tell it like it is.
Thank you so much for this generous comment.
Thinking of you!
So sad that you and Ants have been forced into seperation by such a terrible disease, but I love your way with words……..
Thanks Joanne
a terminal illness really never just inflicts the patient, does it. you do what i do, go back in time, pick out the good and try to cling to it, all the while, seeing what is in front of you
Exactly!
A beautiful and heart-felt post that flows like poetry. Julie I think your blog surely helps others going through the same situation and in many ways gives them permission to be truthful and acknowlege their own pain, maybe with a little less guilt. All of us can look back on any situation and say I should have done this or said that, but things happen the way they do and you and Ming and Ants are amazing people to me!
Well that is encouraging!
so many things we do not expect nor do we know how to deal with, but then we have to
We are often lulled into this false sense of bravado. When things are good we don’t believe it will get that bad for us and if it does we are sure somehow we are superheroes. You have been going above and beyond for so long please give yourself a break. Big hugs!
I wish I could figure out how to carry on more happily.
I feel your pain, and send all my good will your direction. I wish I could offer you peace and acceptance, but I’ve not found mine yet. Perhaps we will get there together? (hugs)
I feel a sense of togetherness too.
I never realized how pretty turkeys are.
Neither did I!
You have such a heartbreaking gift with words, Julie. I know you would exchange all of it for one more good day with Anthony.
Thanks – I think all of the good days are gone.
What ifs are emotional cripplers. What happened, happened. You did what you thought was best at the time, and no one can ask more of you than that.
I guess ….
Really.
Ok!
I think we often do what we do for as long as we can do it, trying to save others from sadness and distress in a situation that’s not actually within our control, and this self-expectation creates a terrible exhaustion.
I now have a new plan!
Hindsight is a double-edged sword – try not to look at it too closely.
Take each day as it comes.
The more you look at ‘yesterdays’ and ‘tomorrows’, the greater the burden of today will seem.
Sending lots of cyber hugs your way.
Vicki
xox
You are absolutely right!
Oh, this is so touching – the inseparable part, and the photo.
Sending hugs!
I am going in this arvo armed with humour.
You are a strong brave lady
My family lost my dad early to multiple myoloma (sp?), and then John and I lost his dad, then his mom (I took her out every Thursday), my grandma and my aunt. We spent time with all of them until the end. And all of us are pretty practical and like to make our own choices instead of having them made for us. We hit the death talks early on. No heroic anythings to keep us around. We prefer quality of life over quantity. Death talks are good, but you’re never really prepared for any of it. How can you be? You and Ming are handling everything remarkably well.
I think all three of you are awesome.
Great photo of both of you… looking quite happy too. I don’t know what to say Jules… Stay strong.