jmgoyder

wings and things

Aug 9

Incoherence

by jmgoyder

Anthony can’t find or utter the words any more and this is terribly frustrating for him, and for Ming and me. He was much more awake today than he has been for the last week, so I felt a bit silly to have thought/written that he might be on the brink of death. Last year I was terribly angry with a relative who suggested this and now it’s me thinking the same thing, almost a year later.

I am shocked at how, within the space of a week, Anthony has developed dysphagia to the extent that he has difficulty in swallowing even vitamised food, and can hardly speak any more. It is the latter that is most upsetting for me because of how much I have always enjoyed our conversations, no matter how bizarre.

If Anthony stops speaking altogether, I will have to become more creative in what I say to him. The blog will help, photos of the farm will help, Ming references will help, memories will help.

I know that Anthony’s incoherence will soon become a silence that I may not know how to read and this worries me.

Me: I love you, Ants.

Anthony: ….

Me: You’re supposed to say it back!

Anthony: I love you, Jules.

 

 

 

 

Alzheimer's Disease; Dementia Anthony Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

21 Comments »
Aug 4

Flights of fancy

by jmgoyder

A few weeks ago, Anthony told me he had been running all morning.

Me: How far did you run?
Anthony: Eighteen miles.
Me: Well, it’s no wonder you’re so exhausted! You must have overdone it. You’re not a spring chicken any more, you know, Ants!
Anthony: Shut up (smiling)
Me: Well bravo anyway. Have a nap if you want. You deserve it. I could never run that far!
Anthony: No, you couldn’t.

I love these flights of fancy, these ‘fabulations’ and, even though I know they are a product of Anthony’s Parkinson’s disease dementia, they don’t differ so much from what we all experience sometimes. Often I will wake up in the morning with what I call ‘adventure dreams’ still hanging around in my psyche, waiting for the next chapter, or a conclusion.

For someone who can barely walk now, it’s beautiful to know that Anthony thinks he can still run.

Alzheimer's Disease; Dementia Anthony Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Western Australia Wings

14 Comments »
Aug 1

Dysphagia and dying

by jmgoyder

Over the last few days, Anthony has been unable to swallow food in the usual way and has been spitting it out. I knew that one day this might happen; I knew that dysphagia (difficulty in swallowing) was a symptom of advanced Parkinson’s disease but I didn’t know it could happen so suddenly.

How can it be that last week he could eat a whole block of chocolate and this week he is spitting it out? Anthony loves food! I thought/hoped that it was just about him forgetting how to eat but, since seeing the speech pathologist today, we now know that dysphagia has arrived. From now on, his food will have to be semi-vitamised; otherwise he will choke or aspirate food/drinks.

So I guess we have now entered yet another new phase. No more tasty treats of the usual kind. It’s the food thing that makes me so sad but, as usual, Ants has accepted that this is the best idea.

Anthony has been so sleepy over the last few days that I keep feeling his pulse to see if he is still alive! I am in a constant state of high-alert in case he dies outside my watch; terrified but also prepared for his death.

At the same time, I am also prepared for a prolonged period of his suffering that I will have to witness. Anthony has already lost his ability to speak coherently, or above a whisper, and I hate that I have to speak on his behalf, but what else can I do?

Our chocolate days are over.

Alzheimer's Disease; Dementia Anthony blogging depression nursing homes Parkinson's disease Parkinson's disease dementia

32 Comments »
Jul 30

Comfort

by jmgoyder

I realised recently that my level of anxiety about Anthony was very high when I was home and unable to visit (due to flu or whatever). I was anxious about everything from him being cold (because his internal thermostat is wonky) to his confusion about why I wasn’t there.

Today, as soon as I entered his room, my anxiety dissipated. He was in sleepy mode and couldn’t remember how to eat his lunch, but he was still there – my husband, my rock.

As Anthony slept, and I watched re-runs of “Neighours” (because I forgot to bring my box of paperwork in), I kept my hand on his shoulder or head, as I usually do, and, gradually, his easy breathing gave me a sense of peace.

Sometimes I cry and cry into Anthony’s shoulder and he gives me comfort just by whispering, “Jules, Jules?”

We are now into our fifth year of Anthony being in a home away from home so he has outlived predictions that he would die either of prostate cancer or Parkinson’s disease by now. His dementia is an offshoot of PD and getting worse but he still knows who I am, who Ming is, and who most family members are.

And, out of all of my friends, family, staff, guess who gives me the most comfort?

Anthony himself.

Alzheimer's Disease; Dementia Anthony Friendship Grief Happiness Humour joy LOVE STORY nursing homes Parkinson's disease Parkinson's disease dementia

12 Comments »
Jul 11

GRRR!

by jmgoyder

It was hilarious the other day when Anthony’s favourite nurse was teasing him about something and, all of a sudden, he surprised us both by growling at her!  He launched himself out of his usual slump, met her nose with his, and said, very clearly “GRRR!” This resulted in all three of us laughing.

This kind of banter is, I think, what keeps Anthony on an even keel, emotionally. And the fact that this particular nurse is familiar to him is vitally important in terms of his health and well-being.

Oh how much I hope that this nurse doesn’t leave! If she even hints at that possibility, I may have to send her a “GRRR” of my own!

 

 

Anthony Friendship Happiness Humour LOVE STORY Marriage nursing homes Parkinson's disease Uncategorized

10 Comments »
Jul 2

Nothing/everything has changed

by jmgoyder

I feel a sense of trepidation, re-entering the blog world after what seems a very long time to me, but is actually only a month. It has been wonderful to be free of the compulsion to both write and read but it’s also very difficult to avoid the guilt; after all, blogging is a reciprocal activity.

Some of my blog friends are also Facebook friends so, to the latter, I apologise for any future repetition but I have been trying to write 500-word column-type articles about Dementia. The reason for this is that I’ve begun volunteering for various organisations that work hard to ensure the ongoing improvement of Dementia care in Western Australia.

The fact that these organisations have welcomed my input so warmly has motivated me to write, network, and speak much more vociferously, about Dementia care, and the opportunities are opening up! This is very exciting for me as I have been a fairly silent, but passionate, advocate for many years. There is a strange, yet wonderful, serendipity in the fact that I was completing my PhD about Alzheimer’s Disease and storytelling during my newlywed years. I had no idea then, of course, that Anthony would one day succumb to PDD (Parkinson’s Disease Dementia).

One of the most delightful things that has happened over this last month is that Ming, our 22-year-old son, also wants to share our story from his perspective. And I don’t think our story would have the same oomph without his input. Ming has, many times, saved me from despair, and vice versa; Anthony and I have the most incredible son with a capacity for empathy that beats the hell out of mine!

Anyway, this post is a rather clumsy re-launch of my blog. I am not going to try to catch up with others’ blogs for the time being, but will certainly keep in touch one way or another. I really just want to focus on Dementia for the time being.

Alzheimer's Disease; Dementia Anthony blogging Family Friendship Grief Happiness LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia

20 Comments »
May 18

Grit

by jmgoyder

Anthony was weighed the other day and he is only seven kilos heavier than I am – 20 kilos lighter than he was a few years ago.

Despite the weight loss, his appetite is fantastic! The food at the nursing home is good and plentiful, with the main meal being lunch which is often a roast. Thankfully he has not yet graduated to vitamized food and, even if he does begin to have difficulty swallowing, I am hoping this will never happen.

I love bringing in treats, and sometimes the kitchen staff give Anthony an extra serve of dessert if it happens to be pavlova. But most of the desserts are served with ice-cream (which Ants finds too cold) so lately I have been bringing cream in which he absolutely loves. He is, after all, a dairy farmer.

The other day I brought a cheesecake, a ripe banana and some double cream and, in less that ten minutes, Anthony vacuumed it all up! But the thing that made this extreme dessert so wonderful was the ‘grit’.

‘Grit’ is the sugar sprinkled on top of already decadent desserts. The other day I forgot to bring the grit so as I was feeding him mouthfuls of cheesecake, mushed banana and double cream, he suddenly protested:

Anthony: Where’s the grit?

I rushed into the nursing home kitchen and snuck a bit of sugar for him.

Anthony: This is much better.

Grit.

 

 

Anthony Family Friendship Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

16 Comments »
May 12

Health kick!

by jmgoyder

Over the last few weeks I have been making a determined effort to get healthier (you know, the usual things: fitbit, green juice, no wheat, organic wine, aromatherapy) and …

… exercise. Not happening, despite the fitbit!

So yesterday I went to one of the many gyms in Bunbury and tomorrow I will begin one of those 3-day free trials. I met one of the managers (D) and she was lovely. The gym isn’t big and flashy and has an easy-going atmosphere. D asked what I most wanted out of the gym and I said, “No tummy and stronger arms; I don’t want to walk or cycle in here because I would rather do that outside.”

Anyway, I’m quite excited about tomorrow. I’ve had gym memberships before but not for years so I will have to re-learn how to use the equipment.

When I told Ants he said, “Well, you’ll be battling to compete with my fitness” patting his flat tummy. He then proceeded to tell me that he did 25 push-ups per day and that I should try it.

Me: I can’t even do one push-up!

Anthony: That’s why you have your problem.

Me: What problem?

Anthony: The tummy (pointing to mine before I put one of his pillows onto it).

Me: Are you calling me fat? How DARE you!

Anthony: Jules, you know I’m kidding; you are perfect.

This verbal exchange was enhanced throughout by Anthony’s fantastic smile. I’m just glad he won’t see me struggling with the weights etc. tomorrow. I will paint a much better picture when I see him, so that he will be as proud of me as I am of him.

Me: Ants, I admire you so much, so much – the way you keep on being well and fit despite the Parkinson’s! And you never get down like I do. You are amazing.

Anthony: I know.

Me: Oh. Well, anyway, I’ll start the gym thing tomorrow morning  and come and see you straight after.

Anthony: I know [yawning]

Me: Sorry if I’m boring you!

Anthony: Off you go, then.

Me: What? Where?

Anthony: To that wildlife park…

I guess the health kick challenge is on!

 

 

 

 

 

 

 

 

 

Anthony Family food Friendship Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

18 Comments »
Apr 30

Contentment

by jmgoyder

I think that contentment is underrated. Anthony has always had it, and Ming has it too, whereas I have always struggled.

Lately, Anthony makes me feel the most wonderful calm; he is so accepting of what is (a huge lesson to me). Ming drops in between restaurant shifts and we all have a bit of a laugh at whatever show is on TV.

Today, after Ming left, this was my conversation with Anthony:

Me: We are all so lucky in our relationship with each other, Ants!

Anthony: Yes, we don’t seem to be losing any hours.

When I think about his words, I feel content.

 

Anthony blogging Family Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Teenagers Wings

21 Comments »
Apr 29

“I love you” variations

by jmgoyder

I say this so often to Anthony that he has developed some rather cynical responses:

Me: I love you!
Anthony: Yes, I know.
Me: I LOVE youuuuuu!
Anthony: So you keep saying.
Me: Oh but I absolutely adoringly love you to the moon!
Anthony: Jules, shut up!
Me: But Ants, I love your big nose, your wide eyes, your weird ears!
Anthony: Your hair looks better.
Me: What?
Anthony: Stop fumbling.

I love him – I love our conversations, often full of mirth, irony, nonsense, joy, mystery and a strange sort of hope. Of course it wasn’t always like this; over the years it has been a very difficult transition from home to nursing home. Sometimes Anthony thinks he has just arrived so we have to go through the same initial conversation again.

What most amazes me is Anthony’s acceptance of what is. He has always been able to do this and is much better at going-with-the-flow than I am, and, incredibly, has never suffered depression. That illness seems to be mine alone and has been for some time and Ants sustains me with his incredible sense of humour.

Anthony: So why are you so down?

Me: What? Why do you think? You’re in a nursing home, Ming is down in the dumps, and I still haven’t produced that blockbuster novel.

Anthony: Don’t worry so much. I cleared the shed out and re-painted it and it looks wonderful.

Me: When did you do that?

Anthony: Yesterday.

Me: Well no wonder you’re exhausted!

Anthony: Jules?

Me: What now?

Anthony: I love you too.

 

 

 

 

 

 

 

Anthony Asthma Australia blogging depression Embarrassing moments Family Friendship Gossip Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Uncategorized

17 Comments »
«Older Entries
Newer Entries »
Blog at WordPress.com.