Parkinson’s disease | jmgoyder

The delicious taste of laughter

by jmgoyder

If I were at a restaurant and was offered a choice of my favourite foods – oysters, fillet steak, pizza, Caesar salad, a cheese platter, a doner kebab, or laughter – I would choose the latter.

If I were at a pub and was offered a choice of my favourite drinks – beer, shiraz, a pink gin, or laughter – I would choose the latter.

If you were to ask me what I would rather do – go for a walk, sleep in, read a book, visit a friend, do a good day’s work, or five minutes of laughter – I would choose the latter.

And, if you were to ask me if I preferred love over laughter, I would have to say no.

Today Ming and I picked Anthony up at around 10am and then proceeded to do a few errands in town before getting burgers and fries and eating them at a park overlooking the beachfront. Ants was very wobbly so we had to eat in the car. I’d given him his 11am pill a bit late so he wasn’t able to eat very well and kept mistaking his fries for strawers (you know for a drink). In the end I had to pretty much feed him half of my burger, but he had a lot of trouble biting, chewing and swallowing, and was dribbling terribly (Parkinson’s disease often affects the swallowing reflex).

On the way home to the farm, as the pill kicked its magic in, Ants began to recover but everything he said was so incoherent, quiet or nonsensical, that Ming and I had to eventually just respond with ‘yes.’ Once home, Anthony became extremely mobile and walked around the farm with and without his walker and at one stage he somehow took his shirt off to get a bit of sun, before coming inside for a cup of tea. But, just as suddenly (about 2.30pm), he became totally immobile and it took me an age to get him from house to car, by which time he was panting from exhaustion (and so was I!)

By then Ming had left us and gone to his shed to do a cleanup so I drove Ants over to say goodbye (it was now 3pm with next pill due at 4pm) and Ming was surprised.

Ming: Are you going already, Dad?”
Anthony: Yes, she just wants to get rid of me.
Me: I don’t know why I bother!

I was very hurt by Ants’ remark (especially by the fact that it was the first coherent thing he’d said all day), and I told him so on the way back to the nursing home. We put the car radio on to drown out the mutual misery until Ants actually whispered something in his new, soft voice. I turned the radio off.

Ants: I’m sorry, Jules.
Me: I can’t believe you said I wanted to get rid of you!
Ants (taking my hand and kissing it): I didn’t mean it.
Me: What do you and Ming want – my blood? I am doing my best!
Ants: I know, beautiful girl. I love you.
Me: I love you too so don’t ever think I want to get rid of you – please!
Ants: Glad I got a bit of work done today and Ming was a great help.
Me: Me too – thank you – I don’t know what I’d do without you, baby cheeks!

[He thought that he and Ming had done some jobs around the farm].

By this time we had reached the nursing home and Ants was totally incapable of walking so I raced in and grabbed a wheelchair and eventually got him into his room, then grabbed two nurses to help him into the toilet, and said a much quicker goodbye than usual.

Why didn’t I just respond to Anthony’s “she wants to get rid of me” comment with laughter? Why did I let myself be hurt? I am such an idiot! He and I have always bantered, so why didn’t I just turn his comment into an excuse for laughter? Well, I will next time, for sure, because these hurtful comments are becoming more regular, so I have to find a way of transforming these faltering conversations into some coherent laughter – yes!

Laughter is a gift that everyone is capable of doing, giving and receiving and it is my favourite thing in the world so, from now on, no matter what, laughter will be my/our medicine.

Delicious!

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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“I just don’t understand you!”

by jmgoyder

Ming and I had a couple of altercations today that were impossible to resolve. This is so frustrating and painful and yet it points to the fact that we all think and feel differently and trying to match someone else’s way of doing both is impossible.

So what on earth do you do with irreconcilable differences? How does a 20-year-old son understand a 55-year-old mother who is trying to understand a 78-year-old husband? The only way, I think, is to accept the different points of view about everything, to accept each other (despite these differences), and to develop a capacity for sympathy. Empathy would be better, of course, but if the other person just cannot fit their great big size 13 feet (Ming) into your shoes, then agreeing to disagree is your best option.

I have always loved the concept of difference but I have never had it thrust in my face as much as the last few years, with Anthony’s declining health and Ming’s growing up. Neither of them understand that, at the center of this dynamic (in terms of age alone), I struggle sometimes to give them both what they need or want. And neither of them even think, unless I remind them (rather vociferously sometimes), that I might actually want to be considered too.

Perhaps love doesn’t require understanding? I am not complaining here (well maybe a bit!), or posing a feminist argument (hell, no – most of the misunderstandings I’ve experienced have been with women); I am just observing that sometimes you just have to accept the fact that you will never agree with the other person.

But you can still hug them and keep your “you are wrong!” thoughts to yourself. Ask Godfrey the gander!

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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“I heard it on the news.”

by jmgoyder

I was a little taken aback today, when I went up to our little local shop to get bread, and the proprietor said how glad she was about Ming. Seeing my confusion, she said, “I heard it on the news.” I told her about the reduced charges and she said she already knew which was quite disconcerting because we didn’t hear or see anything on the news. Then she said she was annoyed that they didn’t pronounce his name correctly and I laughed because how does anyone who isn’t Scottish get ‘Ming’ out of ‘Menzies’?

Ming and I are glad we didn’t see or hear his verdict on the news although I am now wondering who did. Oh well, I’m sure small town chitchat will only give it 24 hours and will mostly be positive and there is no point wondering. I suddenly realized I have been hiding away a bit by not frequenting the local shop, butcher, post office and petrol station as much as usual. It became a little nerve-wracking after the accident because I was never sure if people would ask me questions or avoid the subject (strangely similar to how people are not sure whether or not to ask about Anthony).

Stigma, embarrassment, acceptance, humility, guilt, miscommunication, shame, empathy, bewilderment, grief and joy; all of these factors and emotions and more have bundled themselves together, over so many months now, that it is difficult to know how to untangle what has become a maze that I have found the exit to. And yet, on opening the exit door, nothing looks particularly different; the grass is still brown from a long, hot summer, the mice and rabbits continue to plague us, the car needs washing, and I am very behind with the house-hold jobs.

I never experienced any sort of anticlimax as each of the children recovered from their injuries; it was just pure joy. And yet now that the court case against Ming is over, the joy of Monday has been replaced with a sense of nothingness which is, I guess, the space of anticlimax that precedes exiting the maze.

Tomorrow, I will exit the maze, having spent one final day within its mystery. I didn’t want to stay there but I had to figure a few things out like how to cope with people’s concern or lack of, how to move on with the newfound grace, faith and compassion I am already experiencing and how to be more grateful for every single moment of every single day, and every single person – especially my brothers’ families and my mother.

Tomorrow, if someone else says, “I heard it on the news,” I will allow my soul to smile as I leave the maze.

Happy Easter.

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Easter Saturday, Parkinson’s disease and a picnic

by jmgoyder

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Question: How many times do you begin again?

by jmgoyder

Answer: Every single day.

EVERY
SINGLE
DAY

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Court case

by jmgoyder

Tomorrow, Ming and I go back to court for the third time since the car accident last October. (For those who don’t know, Ming lost control on gravel whilst taking four cousins and a friend on a bit of a joyride on the back of his new ute/truck, and all five children were seriously injured.)

Since then, all involved have been through different versions of hell, but, with the five children healed now, life is beginning to resemble the joy of before-the-accident instead of the trauma of after-the-accident.

Ming (now 20 – he was 19 at the time of the accident) has, over the ensuing months, taken full responsibility for this accident and now awaits tomorrow’s decision from the police as to whether the charge of five counts of dangerous driving might be reduced to one count. Obviously my whole family, including the injured children, are hoping for that latter but Ming and I are now prepared for whatever happens.

Actually no! Ming is prepared, but I am terrified. If the charges against him are reduced he will plead guilty – easy – but, if the charges are not reduced, his lawyer wants him to plead not-guilty in order to negotiate further.

Several times, over the months when the children were in neck and spinal braces, and leg, arm and wrist casts I despaired and sometimes became uncharacteristically angry and, in retrospect, my family coped very well with my unfocused aggro.

I only expressed anger towards Ming once because I knew how traumatized he already was. It was a few weeks after the accident and he and I were in the car and I said, “But why, Ming – why did you take the kids for that joyride – WHY?”

At that hint of blame in my voice, Ming began to scream, then sob. Since that day, he has been calm and taken the whole legal process in his stride, whereas I have been on tenterhooks. Obviously his remorse goes without saying.

I don’t think I can go on with this tonight but glad I have written some of it down.

Wish us luck tomorrow in court!

blogging Family Friendship Grief Happiness Parkinson's disease

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Perfect!

by jmgoyder

Ming and I are going to Perth tomorrow to stay overnight with my niece and her husband in their new house and that’s the exciting part of the journey. The next day I have my first ever appointment with a skin specialist to suss out this pompholyx and, hopefully, get blood and allergy tests.

Unfortunately (and interestingly, having read a few blogposts about how hard it can be to keep up with blogposts) I will probably succumb to blog-fatigue. So, if you don’t see me on your blog, that is why. Also, Ming’s final (we hope!) court hearing is happening next Monday so this is a bit distracting too.

I took Anthony for a long drive on Sunday and it was a wonderful success; his new telephone is working for him better than the previous mobile; and I have rather belatedly discovered the secret to happiness in that it is something you create rather than wait for.

Oh! Ming just said he is auditioning for a part in some sort of production that requires a 20-year-old male with short hair who can deliver “a menacing look”.

Perfect!

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Oh how much I miss the dancing days!

by jmgoyder

I was going to write something both poignant and eloquent but have hit a blank tonight. Nostalgia I guess. I tried to show Ants how to use his new phone to no avail this afternoon. Then, just a moment ago, he actually answered it!

The treasure chest of memories of my dancing days with Anthony (and Ming too) is a constant source of absolute joy in the face of what we are going through now. This afternoon Ants was more frail and confused than I have ever seen seen him and I got a bit of a shock.

So, yeah, I miss the dancing days.

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Telephone traumas

by jmgoyder

Over the last six months it has become increasingly difficult getting hold of Anthony on the phone. He has one of those big mobile(cell) phones with big digits but he is now too confused to answer it. When it rings, he either doesn’t realize it’s a phone or else he presses the wrong button and ‘hangs’ up immediately. Until recently I was able to reach him around three times a day if I kept ringing (especially on days I couldn’t get into town to see him) but now I am lucky to reach him once per day.

So, at the suggestion of a couple of nephews, today I cancelled his mobile(cell) phone account and spent an hour on the phone to Telstra to set up a landline to his room. I had already bought an old-fashioned handset with enormous numbers on it and tomorrow a technician is coming to the nursing home to get the line working. Poor Anthony is (hopefully temporarily) confused about what is going on as I did all this Telstra business on the phone from his room in the nursing home.

It would be so wonderful if he is able to manage answering this new phone because then all the people wanting to ring him would be able to cheer him up. The disadvantage, of course, is that if he is sitting outside in the sunshine (often) he won’t be able to answer it, but, with winter coming, he is more likely to be in his room anyway.

Fingers crossed!

Family Friendship LOVE STORY Parkinson's disease

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A Sunday drive

by jmgoyder

Going for a drive with Anthony, which I now do quite often, has proved to be a great success. If I am doing errands in town, I take him with me and he sits in the car while I do banking, post office, grocery and other jobs. He loves sitting in the car and watching passersby and it is a way of being together that doesn’t entail the heavy lifting of him in and out of the car except for when I collect him from the nursing home and take him back.

By lifting, I don’t mean lifting the whole of him but, in order to get him out of the car, I have to help him twist around, then grab my hands, then we do a 1-2-3 attempt to get him standing up. Then he can usually walk with the walker but sometimes not so I have to get the wheelchair. (I have now bought one that can be folded one way or the other). Getting him into the car is easier; I just use my bum to push his bum into the seat, then I lift his legs in if he can’t, then I get into the driver’s side and sort of shove him over because he has become very crooked and leans over to one side. Then I put his seatbelt on and we’re off!

I have decided to do this more frequently, rather than bringing Anthony home or taking him out to eat, or visit people, because it is so much easier on my back than the constant transfers necessary in those sorts of outings. On Sunday we went for a long drive down to the small, picturesque town where he was brought up, Balingup, and I learned a bit of a hard lesson in that I suggested we go to the pub there for a drink and some fish and chips. Ants was more mobile than usual so he managed the walker, very slowly, in and out of the pub, but once seated, he kept nearly falling off the chair because he leans so badly to the right. I had to sit on that side of him and keep pushing him upright (not particularly gently I might add!)

Here is our conversation while we ate fish and chips:

Me: Sit up for God’s sake!
Ants: You’re so rough, Jules.
Me: Wipe your moosh – you have fish all over it!
Ants: Give me the dribble rag.
Me: You had it – argh, it’s on the floor!
Ants: I have to go to the loo.
Me: What? Oh no!

After a very strenuous and slow trip to the loo with me, we got back to our table to find the fish and chips cold of course, but the beer was good. By then, however, I just wanted to get Ants back to the nursing home because I could see he was faltering (like clockwork 3pm), but he didn’t want to go.

Ants: But I’m having a good time.
Me: Too bad – I have to get you back before dinner.

It took around 20 minutes to get Ants out of the pub and into the car and we were off again! But then another problem – our thermostatic incompatibility – occurred.

Ants: Jules, I’m freezing. Put the heater on.
Me: What? It’s boiling in this car already!
Ants: Is there a blanket?
Me: Okay I’ll bring one next time, wrap you in it and put you in the boot (trunk).
Ants: You’re so sexy when you get mad.
Me: Get your hand off my knee – I’m driving!

So for the hour it took to get back I had the heater on Ants and my window open so I didn’t suffocate or sweat (I am avoiding perspiration at all costs due to the stupid pompholyx).

Long story short: I got Ants back into his room at the nursing home and comfortable in his chair, put the ABC channel on his TV and then told him I was going home and would see him the next day.

Ants: Where are we staying in Balingup?
Me: No, I’m going home to Bythorne.
Ants: So where am I?
Me: Wattle Hill – the nursing home.
Ants: Who is going to look after me?
Me: The nurses.
Ants: But they always kidnap me.
Me: No that’s just your Parkinson’s confusion – nobody is kidnapping you, Ants!
Ants: Are you sure?
Me: Yes, you’re safe and in good hands and I’ll see you tomorrow.
Ants: Give me a hug.
Me: Okay, and I love you so much babycheeks!

I got home around half an hour later and Ming asked why I was so exhausted and, when I told him about the day, he suggested that, from now on, I just do the drive thing and not get Ants in and out of the car so much.

Ming: I don’t get you, Mum. Why do you keep bothering?
Me: Because he’s my husband and I love him.
Ming: But this is not good for your happiness – you deserve it way more than Dad!
Me: Why?
Ming: Because he’s old and you’re still young!
Me: So does that mean you deserve to be happy more than I do because you’re very young?
Ming: Of course!

Okay – a few lessons learned here (I think!) One thing for sure is that our car is going to accumulate a fair bit of mileage in the coming months!

Happier days:

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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jmgoyder

wings and things

The delicious taste of laughter

“I just don’t understand you!”

“I heard it on the news.”

Easter Saturday, Parkinson’s disease and a picnic

Question: How many times do you begin again?

Court case

Perfect!

Oh how much I miss the dancing days!

Telephone traumas

A Sunday drive

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