jmgoyder

wings and things

Aug 12

Planning a funeral

by jmgoyder

Anthony isn’t dead yet, and we have never discussed things like burial versus cremation, so I guess those decisions will be up to me, and Ming.

Today, I fed him his vitamised lunch, but he wasn’t particularly interested in the food; he was, as usual (as in the last week or so), very thirsty, so the drinks were a success. Conversation was close to nil and then he went to sleep while I watched television blankly.

I soon realised that he must have had one of those TIAs (mini-strokes) because he was unwakeable. But, as I’d already signed the forms indicating that Anthony was not a candidate for hospitalisation, resuscitation, a feeding tube, or any intervention, I didn’t alert the staff. In all honesty, having seen him diminish so rapidly over recent days, I rather hoped he would die with my warm thumb on his cold wrist.

All afternoon, I kept checking his pulse, hoping for two opposite things! I wanted him to die, for his sake; I wanted him to live, for my sake, and for Ming’s.

Death is definitely on its way for Anthony. Strangely, I didn’t see it coming but now I do. Accepting that has helped me, tonight, to make funeral arrangement decisions. If I make those decisions now, and pre-pay for his funeral, we will at least be able to grieve without so much red tape.

Last week, Ants and I would have been able to joke about funeral caskets; last week, Ming and I would have been able to discuss the future with Anthony in it; this week the whole story has changed.

 

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

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Aug 11

All of a sudden

by jmgoyder

I am still a bit shocked at how rapidly Anthony seems to have deteriorated in such a short space of time – in just a week and half. Of course, his inability to eat food that isn’t vitamised, the fading of his whispered voice, and the cognitive decline, were all things I anticipated in a ‘one day ….’ way. I didn’t realise, until now, that it could all happen so suddenly.

Less than two weeks ago, I was helping Anthony with his lunch in the dining room of the nursing home and one of the carers, who was helping another resident with her food, remarked about how good Anthony’s appetite still was. I remember telling her how wonderful it was that he could still eat normally. Then, just 15 minutes later, Anthony began to spit out his chewed food over and over again. Ironic!

So, from someone who was gobbling up everything from boiled eggs, to oysters, to fruit cake, to cherries, to chocolate, as well as the wonderful meals provided at the nursing home (often a roast dinner at noon), Anthony is struggling to swallow even custard. Not only that: he has lost his appetite in general, eats very slowly, has become extremely thirsty, and he seems to have gone quite blank. Once again, I was expecting all of this but I thought it would be more gradual, not so sudden.

I am seeing our doctor tomorrow in the hope that he will give me a prognosis estimate if that’s possible. After all, as I’ve often said, jokingly, Anthony has outlived his ‘use by’ status by years; his accepting resiliance is amazing!

Our fantastic conversations, his one-liners, the joking and quipping and teasing … all impossible now. How did this happen so suddenly? There is no longer any point in me recording these with my always-handy pen and paper. I am so glad I have scribbled and blogged and noted so many of these conversations because, if Anthony becomes totally silent, I know what to talk about – the Aga, there is plenty of toothpaste, lots of money in the bank, and Ming is fine.

Since lunch is the main meal, I’ve decided to stick to a routine of being at the nursing home between 11am – 2pmish daily so that I can feed Anthony his lunch, talk with him, embrace him, and just be with him.

As I was leaving him this afternoon, he was, as usual these days, in slumber mode but all of a sudden he opened his eyes wide.

“Give me a smile, Ants!” I said, laughing at his wide eyes.

He took one hand from underneath his knee blanket and pointed through the window. Then he whispered, “Out there .”

PS. To blog and facebook friends: I apologise for not reading your posts lately – will catch up soon!

 

 

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

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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.

 

 

 

 

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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

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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

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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

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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

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