jmgoyder

wings and things

Jan 6

The Anthony story: Chapter 1

by jmgoyder

Having decided to write a book about my husband’s Parkinson’s disease dementia (PDD) and how our son and I have dealt with Anthony’s condition, I reluctantly went back to blog entries.

My reluctance was only due to the fact that we are now coping well, so I didn’t particularly want to re-visit the traumas of Anthony’s escalating disease, his admission to the nursing home, and the hearbreaks of that era.

Nevertheless, I did go back in time, via my blog, to discover that during the December of 2011, Anthony was in a Perth hospital for the third time, with a specialist trying to get his PD medications ‘right’. Not long after he came home, he had what I now know was a TIA (a mini-stroke) and I called the ambulance. The hospital experience was frightening as Anthony became totally disorientated.

As Ming was due for major spinal surgery for scoliosis in early February, we gratefully accepted the respite room, at a local nursing home, for Anthony from the 4th January, 2012. This was a godsend as I knew I could no longer leave Ants alone on the farm and I needed to be in Perth to look after Ming post-op.

On January 24, 2012, Anthony’s respite room became available permanently and we had a week to make that decision. Even thought it was a mutual decision, between Ming, Anthony and me, and we all agreed, the pain of this decision was ghastly and, for me particularly, agonising.

I wish that I had known then what I know now, about how to make this experience better. Back then, Anthony wasn’t as confused as he is now with Dementia, so he must have felt abandoned regardless of how many hugs and words of comfort I gave him.

Today, he removed my hand from inside his and carefully placed it on his table.

“Why did you discard my hand, Ants?” I asked

“I thought it might need a rest, Jules.”

 

 

 

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Jan 1

A back-stepping narrative

by jmgoyder

It is the first day of another new year and I have made the decision to use this blog as a test-run for a book about the personal journey Anthony and I are still experiencing with PDD (Parkinson’s disease dementia). Having printed out thousands and thousand of pages of blog writings (over five years!) my initial idea was to go back to the beginning but, at the moment, this is too bittersweet and the nostalgia of ‘wings and things’ is ironic as most of our winged creatures have been re-homed. I think this is significant in our journey but I am not sure how yet. I guess, in losing those winged creatures, I have learned how to deal with loss, and sometimes with death.

To write a book about PDD, with a specific focus on Dementia, seems ambitious, but I really want to do this in order to demystify this mysterious disease. Another reason to write a book like this is to demystify the nursing home experience and to honour the carers.

When I left Ants today to come home, he tried to get up from his armchair several times, so I explained to him again and again that I had to go to work. He wanted to accompany me and kept saying “I don’t understand what’s going on, Jules.”

To leave him like that is ghastly and I worry of course. But I know he is in good hands and I know that tomorrow he will be fine again and happy to see me.

Happy New Year!

 

 

 

 

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Dec 9

Resting

by jmgoyder

I decided today to take another extended blog break. Instead, I want to concentrate on getting previous posts about Anthony’s Parkinson’s disease dementia into the form of a publishable book, or, at least, a series of publishable articles.

Most bloggers can relate to the need for a rest and I have been slackening off for ages, hardly reading anybody’s posts, not responding adequately to comments etc. despite how grateful I am for feedback.

To take a break from blogging will give me a rest from a self-imposed need to share. I think the Dementia Dialogues are important and I will continue to record and write those, but not publicly until next year.

Today, after Ming voiced his typically loud philosophising in Anthony’s nursing home room, Ants whispered “I know exactly what he means” but we were unable to get him to elaborate further.

I briefly jostled with Anthony, pretending to turn our hand-holding into an arm wrestle….

Anthony: Don’t! You might hurt me.

Me: Stop being so ridiculous, Ants – you’re not that delicate!

Anthony: Yes I am.

Me: What happened to the macho machine I married?

And then, without a beat, Anthony said, “He retired”.

So, with Anthony retired, and me taking a rest from blogging, it’s now Ming’s job to keep our story going.

In the meantime, Happy Christmas!

 

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Dec 4

Dementia dilemmas

by jmgoyder

We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.

Anthony: Why?

Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!

Anthony: You’re not so bad yourself.

Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!

Anthony: Well I wouldn’t go that far, Jules.

Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.

But this afternoon, we had a completely different kind of conversation:

Anthony: Okay, let’s go.

Me: Where?

Anthony: I want to go home to see Mum.

Me: But she isn’t there, Ants.

Anthony: Where is she?

Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).

Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]

Me: I think they’ve gone out for lunch.

Anthony: Well we can join them and then go to the farm.

Me [grasping for straws]: But what if the doctor comes?

Anthony: You always do this.

At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.

While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….

Anthony: Hey, hey [squeezing my hand harder]

Me [looking at him in mock annoyance]: What now!

Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?

Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.

The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.

Anthony: Thank you for telling me, Jules.

Me: Are you okay, Ants?

Anthony: Not really.

Me: What can I do?

Anthony: Can you just take me to the farm – my farm?

Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.

Anthony: You always say tomorrow.

Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!

Anthony: But I’m getting better every day. Why don’t you believe me?

Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?

Anthony: Don’t cry, Jules….

It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.

On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.

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Dec 1

Dementia dialogues 12

by jmgoyder

Anthony: How do you always find me? It’s remarkable!

Me: I have a really good map, and a really good memory.

Anthony: You look beautiful.

Me: Wow, thanks, Ants! You look good too.

Anthony: I need to get rid of this moustache.

Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.

Anthony: So what do I have?

Me: Well, you have a lack of moustache I guess….

Anthony: Mmm.

Me: Could we resume this discussion tomorrow?

Anthony: Yes, just bring chocolate.

 

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Nov 22

Spring cleaning

by jmgoyder

In the nearly 24 years that Anthony and I have been married, many friends and family have commented that coming into this house is like stepping into a time warp. As a newlywed, married to an older man whose mother I had cared for, I didn’t feel the need to alter anything because I already loved it here.

I don’t love it here anymore.

Well that’s what I thought the other day and the thought itself took me by surprise.Then it took me many more days to get that thought comfortable in its own words. But uttering those words took courage.

“I don’t love it here anymore, Ming.”

“Nobody comes here anymore, Mum.”

“That’s because Anthony isn’t here, Ming.”

“But WE are here, Mum!”

And so we have begun the process of spring cleaning the corners of the house that Anthony will never see again, except in his memory.

Why don’t I bring Anthony home? Because he is mostly immobile. Because it might break his heart to come home and then have to go back. Because it would confuse him terribly. Because he thinks his mother is still here. Because of ablutionary issues. Because, despite having lost so much weight, he is too heavy. Because I don’t want my already-cracked heart to shatter. Because I love Ming….

This crisis of conscious has catapulted us into re-seeing this little old house as ours or, as Ming put it, “YOURS, Mum!”

I don’t quite know why taking all of those dusty books out of the dusty book case did me in because we organised them into categories: antiques, donations, rubbish. Perhaps it was the delicate scrawly signature of my husband’s 5-year-old self inside an otherwise empty school diary dated 1941.

And then I began to cry.

“I don’t love it here anymore, Ming.”

“You will, Mum.”

Spring cleaning is not for the faint-hearted!

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Nov 20

Agog

by jmgoyder

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Nov 16

Nursing home thoughts 1

by jmgoyder

 

One of the things that I most appreciate about the nursing home where Anthony lives is the friendly kindness that so many of the staff extend to me. As I am there so much, I sometimes wonder if my presence may be inconvenient, i.e. when staff need to get Anthony ready for bed. The earlier this happens the better, I imagine, because, as each day wanes, so does Anthony’s mobility, cognition and emotional equilibrium. He can be very stiff and resistant – even when I take a jumper on or off him. Perhaps he even gets feisty but I am confident that the carers know that this is due to the confusion of dementia, and the fear – sometimes terror – that often accompanies “sundowning”.

I don’t know if the hoist still scares the hell out of him but I think it probably does and it is difficult for me not to worry. After all, he once mistook the hoist for a pirate ship and the carers for kidnappers. He still says things like:

Those kids – little bastards – attacked me again, but I fought them off.

So I say things like:

My hero!

Another thing that I appreciate about so many of the staff at the nursing home is humour. One of the carers has a kind of boppy, out-of-left-field humour. She is as quick-witted as she is quick-footed (she always seems to be running) and she can banter with Anthony, nose to nose, until he says “BOO!”

No nursing home is perfect, just as no life is perfect, and, over the nearly five years Anthony has been a resident I have only felt the need to ‘make a fuss’ a couple of times. I think that is pretty good innings actually.

The empathy expressed by so many staff to me (not necessarily in words, often in the curl of a hug, or in the blink of a wink, or in the form of the single smile exchanged in the space of my ordinary day), is my sustenance. Beautiful.

This 80-year-old demented, decrepit, frail, frowning, bony, silent, sleepy, blank-faced man (as I am sure he is often perceived) is still the love of my life.

For those funny, caring, beautiful staff, I cannot thank you enough!

 

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Nov 8

Hands on!

by jmgoyder

Today, as I held Anthony’s hand in mine, he kept on bringing my hand slowly up to his mouth, then kissing it. This happened over and over and over again until it became hilarious for both of us.

Me: You are melting my heart, Ants!

Anthony: That’s as it should be.

Me: We never used to hold hands in the old days – it’s kind of weird – and I am getting a bit irritated. Sorry!

Anthony: Your hands are in bad shape. Mine have things on them [pointing to one of his thumbs and a finger where I could see nothing wrong].

Me: Does it hurt?

Anthony: No it’s wonderful.

Me: Oh, okay I think I get it. Well, you’re lucky – one hot day and I have the rotten blisters back [I developed a strange condition a few years back whereby perspiration causes this thing called pompholyx].

Anthony: You need to stop scratching them.

Me: Yeah, but it’s so itchy! Anyway stop telling me what to do. You’re lucky you have such wonderful hands.

Anthony: Yes, I do, don’t I.

Okay, so the above conversation was at around noon, then I met a friend for coffee. I got back to Anthony at around 2pm. The hand holding resumed but the conversation did a bit of a U-turn in the cul-de-sac of Anthony’s dementia. Instead of kissing my hand, he kept removing it from his and placing it very neatly onto the side of my chair.

Me: Why are you rejecting me?

Anthony: It’s in the way. Jules, can you take these off? [He raised his hands, palms-up to me.]

Me: So you want me to take your hands off?

Anthony: Yes!

Me: But why? I can’t remove your hands, even if I wanted to, Ants.

Anthony: They’re in the way.

Me: In the way of what?

Anthony: That boy.

Me: You mean, Ming, our son?

Anthony: Yes, that’s the one. Can he take these [again, offering his hands up]. They could join those two little sheds into one.

Me: I think that’s a fantastic idea, Ants and we should tell Ming as soon as possible. He and I already know what a fantastic farmer you are. Thank you!

Anthony: So when are we going home?

The wish to come/go home has, unfortunately, become a frequent topic of conversation lately, after about a year of Anthony forgetting all about this beautiful farm. I hate the moments of slicing lucidity in which he says to me that he wants to be back at home; I hate bluffing and promising this impossibility; and I hate my deception of course!

Anthony’s immobility, and other issues, make it impossible for me to bring him home, even for a couple of hours. I can’t lift him at all any more; he often requires two carers and a hoist.

He is, however, the most uncomplaining, resilient, beautiful person I will ever know and I am so proud that Ming has these attributes too.

Quite handy!

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Nov 5

Delight!

by jmgoyder

This afternoon, I entered Anthony’s nursing home room and his expression was of surprised delight. Nowadays, this is a bit of a novelty as he is often asleep.

Anthony: Jules! I didn’t expect you so soon!

This was a great relief to me as I had been away for a couple of days.

Our afternoon was enhanced by a visit from P, Anthony’s nephew, who visits most weekends. P recounted stories of his own childhood on the farm where Ants grew up – including Anthony’s pet pig attacking him.

Anthony’s words were stilted but eventually the pig (and other) stories came out and it was wonderful to see Anthony smile in remembrance. All thanks to P of course!

I so love the  way Anthony smiles and am so grateful for P!

Ming has been mistaken by Ants for various nephews but copes extremely well and simply kisses his dad on the forehead and leaves. So far, Ants always recognises me but I am ready of course, when he won’t.

 

 

 

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