by jmgoyder
It seems indecent to feel, or worse embrace, joy, when your loved one is disappearing.
But joy is clever; it sneaks into the mud of your sorrow and explodes it away in rainbowish sparkles.
It is nearly 35 years since I, rather transparently, fell in love with Anthony and he kept his reciprocal feelings secret (I was, after all, still a teenager and he was over 40).
I think of what we had, what we endured, what we celebrated, and what we have now, as a big kind of love – huge, inviolable, but feather-light, a joy.
I have never felt so sad.
I have never felt so happy.
Joy.
Anthony.
Family Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Wings
by jmgoyder
I am finding it very difficult to talk/write about this without crumbling into a teary mess of memories. Hopefully, it will be okay if I just post short glimpses of how Anthony’s Parkinsonism revealed itself. It’s not all tragic, of course, and we continue to have many comic moments.
My first memory of something being amiss with my macho-machine husband was when he couldn’t open the Vegemite jar for our morning toast. I even remember teasing Anthony which, in retrospect, seems cruel, but we had a buoyantly bantery relationship, a beautiful little son, and I was adept at opening jars of Vegemite for Ming.
Little did we know then that Parkinsonism had moved into the spare room.
Family Friendship Grief Happiness LOVE STORY Marriage
by jmgoyder
Okay, of course the medical professionals know a bit about the type of Parkinson’s disease that Anthony has lived with for nearly a decade, but his official diagnosis is Parkinsonism. Anthony doesn’t have the Michael J Fox variety of Parkinson’s disease; for example, he has no tremors. If he’d had the characteristic tremors, we may have found out earlier.
Anthony’s Parkinsonism is best described as a list of losses in movement. If I look back in time, my first memory of a change in Anthony was his face. It was a big, huge face with a receding hairline and a deeply grooved forehead, twinkling blue eyes, large, but refined nose, sunburned cheeks, large, laughing mouth with good, straight teeth, and a strong jaw.
To be be continued….
Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia
by jmgoyder
Just checking in halfway through my blogbreak. Thanks to all for comments on last few posts – I really appreciate it and had intended to reply, sorry!
I’ve temporarily unsubscribed from most blogs to give myself a break, but will get back eventually I hope.
It’s just that I am so sad at the moment, about Anthony, because of how fast the dementia is happening now.
Ming, Gutsy9 and I are all fine which somehow seems wrong. I miss Anthony so much.
blogging Family Friendship Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia
by jmgoyder
“Reject” is the name Anthony gave a steer whose mother had rejected him at birth, and who Ants raised by hand. When he was little, this steer loved Ants so much that he would run at him, jump up and try to hug him around the neck with his two front legs.
Animal Family Friendship Happiness LOVE STORY Marriage Parkinson's disease dementia
by jmgoyder
Until recently, Anthony’s level of distress was due to an entirely rational sense of homesickness. Recently, however, it has been exacerbated by an irrational fear that I no longer love him.
Today he forgot that he saw me yesterday (it’s the first time this has happened), so he was really upset. I had to remind him about yesterday and then he was apologetic for having forgotten.
At this stage of his dementia Anthony can fluctuate between lucid and not lucid in the space of a single sentence. He frequently hallucinates various animals (usually calves), gropes for the right word constantly, and is exhibiting several behaviours that are totally out of character.
I hesitate to say this but I’m beginning to think that full-blown dementia would be better than this limboland. It’s not that any of the above shocks or upsets me too much because I nursed people with dementia for years, so I know what to expect.
The thing that is most distressing for me is Anthony’s distress and the fact that I have never ever known him to be so sad until now. And that is my sad too.
Family Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia
by jmgoyder
For some time now Anthony has had diffculty with his phone at the nursing lodge. He forgot how to use it to ring me ages ago, but now it seems he has also forgotten how to answer it.
I couldn’t get into town to see him today and I nearly went mad tonight, trying his phone. Usually I ring the nursing staff to help him answer his phone and they are wonderful, but I thought I’d give them a break tonight.
Ming and I will see Ants tomorrow and that’s great but I worry so much about Ants being cold. He feels the cold terribly and winter is approaching.
I’m having a hard time coping, so am taking a break from reading other blogs for a few days so I can figure a few things out – including Anthony’s telephone!
Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia
by jmgoyder
Pure bliss!
Ming has gone to Perth to watch a football game so there is nobody here to say:
What’s for dinner?
Why are you flooding the pens and wasting water on those stupid birds?
I thought we were watching a movie together 20 minutes ago!
I don’t particularly like this dinner – what is it?
What the hell are you crying for – what did I do wrong now?
Don’t touch any of my stuff!
But why do you want me to move out?
You ruined my life yesterday when you said to move out.
No, I don’t want to ring Dad again!
On the other hand….
Mum, you are like my mate.
Do you need a hug?
I’m sorry I didn’t like the dinner – I tried to!
Are you okay?
Can we have a talk about life tonight?
I wish I knew Dad when he was young.
I love you, Mum.
He is my best friend – this Ming – but it’s still rather pleasant to be Mingless for 24 hours – haha!
Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers
by jmgoyder
No matter how honest and revealing a person is, either face-to-face or in a blog, there are certain things that are unsayable, secret, too personal.
There have been a couple of incidents at the nursing lodge lately where Anthony has behaved in a way that is disturbingly out-of-character.
The ungentling of my gentle husband’s brain is causing him to do and say things that are horrible. Taboo.
blogging Family Friendship Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia
by jmgoyder
I am so sick of saying the same thing over and over and over and over and over again.
Today, when I got Anthony home for the afternoon, he asked, for the millionth time if he could stay the night. And for the millionth time, I reminded him that he was in the high care section of the nursing lodge and needed two people to lift him etc.
He looked at me, his eyes hard, and said, “So now I know you don’t care about me anymore.”
It was too much for me to bear and I lost my temper, interrupting this regular refrain with a few minutes of hysterical rage which woke us both up and, thankfully, ended in a mutually apologetic hug.
Then the wheelchair taxi arrived to take Ants home.
Refrain.
Family Grief Marriage Parkinson's disease Parkinson's disease dementia Uncategorized
jmgoyder 