jmgoyder

wings and things

These boots were made for walking ….

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I have just returned from a delightful couple of days in Perth with a wonderful friend. She flew down from up north and I drove up from down south and we stayed at a beautiful resort, shared some fine wine, extraordinary pizzas, watched a very complicated movie twice (because we didn’t ‘get it’ the first time), and enjoyed chef-styled breakfasts each morning.

It was brilliant! We each had various big-city things we had to do so yesterday we went our different ways for a few hours and I visited my friend, Rose, at Dimario http://dimario.com.au

Dimario is a shop that is close to my heart for many reasons (for example, I love boots). But the main reason is that several years ago, when Anthony wasn’t so ill, we walked in and I fell in love with a pair of boots that were extremely expensive and extremely beautiful. Ants and I had to go back to our hotel room to mull it over and, despite being a rather scroogy careful-with-money person back then, he wanted me to have those boots.

From then on, whenever we went to Perth (which was only once a year), Anthony would actually suggest going to Dimario. Rose and Nikki would welcome us like old friends and Ants would watch as I tried the various boots on, usually convincing me to get the better, more elegant and expensive ones.

Then, one year, it became too hard for him to get out of the car; another year, it became too difficult for me to take him from the hotel to the shop, so I went by myself; another year, he was in a hospital in Perth having his Parkinson’s Disease medications reassessed; another year Ming came with me and cloned Anthony in picking out the best pair of boots; another year we didn’t go to Perth at all as Anthony’s health had deteriorated too much. I guess that was around four years ago and my memory of this phase in our lives blurs a bit around the edges.

To see Rose again yesterday, despite the fact that it’s probably been a couple of years now since I visited her gorgeous shop, was incredible. I was greeted with a hug!

Rose: And how is your beautiful husband?

Me: He’s in a nursing home now but he still remembers you and I need to buy some boots so I can wear them to the nursing home and remind him again.

Rose: I will always look after you; what about these?

Me: Not me – I rather like those….

Rose: And how is your beautiful son?

Me: Still beautiful. What about those embroidered boots?

Rose: They’re on sale – let me see if we have your size.

Rose then told me that Nikki had retired but had a pair of the same boots and I asked her to give Nikki our love. She said she would, then, when the boots were a perfect fit, Rose discounted them even further, I bought them and we had another hug as I left.

After that, I picked my friend up and we went back to the resort. We shared a mutual admiration of our purchases then began (again!) to watch the stupid movie and order pizza.

Today, I dropped my friend at the airport and headed home. We are going to meet like this every few months; it’s a wonderful arrangement and, even though she and I have lost touch on and off over the decades, we are still the same buddies we were as teenagers.

And I can’t wait to show Anthony my new boots tomorrow!

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Anthony’s ‘girlfriend’

There is a lovely woman (I will call her Mary) who works as supervisor during afternoon shifts at the nursing home. She and Anthony have such a rapport now that his slow smile stretches into a grin when she enters his room to give him his 4pm meds. The three of us now joke that she is his ‘girlfriend’.

Today was no exception:

Mary: Hi Anthony, I’ve got your pills.

Me: Ants, it’s your girlfriend!

Anthony: Hi … (smiling)

Me: It’s Mary, Ants.

Anthony: Hi Mary.

Mary: Here are your pills, Anthony.

She and I then got chatting while Anthony swallowed his pills (it sometimes takes awhile). I had my one remaining PhD student’s nearly-completed thesis on the table and was checking it for typos. Mary was curious so I told her I used to work at the university and that I’d done a PhD too years back and turned it into a book about Alzheimer’s disease. She asked if she could read it so I gave her the copy I have in Anthony’s top drawer. Then she got called away.

A few moments later, I asked Ants if the pills had gone down.

Me: Have you swallowed them?

Anthony: No.

Me: What? Do you need water? Open your mouth. Yes, they’ve gone down, your mouth is empty.

Anthony: No.

Me: What do you mean ‘no’?

Anthony: Ring the … girlfriend. She might have them.

Me (laughing and hugging him): I don’t need to ring her – she’s here! And the pills have gone down, trust me!

I continued to read the thesis when all of a sudden Anthony belched loudly. I put my pen down and glared at him.

Me: How dare you burp in my presence!

Anthony: I’ll have you know … I’m whatshername’s boyfriend.

I find it absolutely amazing that, despite the confusion of Anthony’s dementia, his sense of irony and humour can be so extraordinarily spot on!

After laughing my head off, I took my leave with the usual excuse of ‘just going to get some groceries’.

Anthony: Don’t be too long.

Me: I won’t and just remember I am your real girlfriend.

Anthony: No you’re not – you’re my wife.

It was a very happy drive home.

Another irony is that Mary has borrowed my book which is based on a similar experience from my years-ago nursing days. The way Mary and Anthony interact parallels my experience with a patient I called ‘Joe’, whose refrain became the title of the book “We’ll be married in Fremantle.”

Perhaps the fact that I no longer work in the dementia wing is, despite the difficulty of having had to make this decision, a good thing. As I am now a lady of leisure again, I have much more time to write about the subject of dementia which is so close to my heart and has been for over 20 years. Now, of course, it’s even closer with Anthony in its grip.

My mother and I had a laugh on the phone today because she had visited Anthony in the morning and, after an hour or so, he suddenly said, “Are you going home now?” Having been dismissed, she gathered her knitting and left after giving him a hug.

Me: How come you asked my mother to go? She was hurt.

Anthony: I didn’t.

Me: You asked her if she was going home and she took the hint!

Anthony: She’s not you.

Okay, so my mother is out of the competition but there is still Mary to worry about – haha!

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Still Anthony

A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.

I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.

Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.

I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.

Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.

Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.

Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.

I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.

Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!

Still Anthony.

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Grief

Tonight I am in a state of such grief about Anthony that it is as if my eyes are inventing tears over and over again. I know he is cared for, and popular with staff, and I know he has gotten over his terrible fear of the hoist but of course I still worry.

Mostly I can manage the grief, but sometimes I just have to succumb to it by crying and crying and crying until I, once again, reach a point of acceptance, and the anticipation of tomorrow when I will see Anthony again.

Ming and I talked about it tonight – this grief thing – but we were unable to come to an agreement about how to cope. We both love Anthony so much; we both feel guilty to have placed him in the nursing home; but we are also happy that neither of us has the burden of care anymore.

We can just love Anthony now and that’s what I said to Ming tonight. But the grief is potent and present and debilitating.

I just hope that Anthony knows how much I love him, even when he forgets who I am.

Grief has gutted me lately, but it’s not going to win!

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Today

Okay so I’ve been reading Tolle and trying to do all of that ‘being in the now’ stuff and I think I have a better handle on things.

In dementia there seems to be an unhappening; today is simply today, this minute, second, moment is just that. Memories are painful and confusing and the future is bleak. Now becomes all-important.

So today I visited my friends in the dementia cottage with a completely different attitude. As an ex-staff member I felt the wonderful freedom of just being a visitor!

I did a whole lot of hugging today.

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Just being there

One of the things I’ve learned over the last year or so is that I don’t need to do anything, go somewhere, think of an activity, plan an event, force Anthony to converse, figure out how to get loved ones to visit him more, stress myself wretched with ideas of how to make his life better … I just have to be there.

So that is what I do now – an undoing really – a breath-saving realisation of how simple it is. I sit next to this beautiful husband of mine, with my hand on his shoulder, or stroking his head, watching television, talking about the past, sharing secrets, rejoicing in our son, Ming, smiling at each other, joking about silly things ….

We are so conditioned to do, do, do! It is such a great relief to simply be there, to embrace the long stretches of silence when Anthony is dozing, to quietly rejoice in the fact that our love has not been diminished by his disease, to just be.

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Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

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A way with words

Despite the fact that Ming always loathed anything to do with literacy when he was at school, he has a wonderful way with words and, like Anthony, often comes up with the funniest phrasing.

The other morning I was about to go in to see Anthony and, wanting to add a bit of colour to the day, now that the weather is wintery, I’d dressed in an orange shirt and a multi-coloured jacket that had a bit of orange in it. As I was about to leave the house, I had this brief conversation with Ming:

Me: Do you think this shirt clashes with the jacket, Ming?

There was a long pause as he looked at me, his brow furrowing in exactly the same way Anthony’s is furrowed.

Ming: I have a bit of a problem with the jacket, Mum.

Me: What? But it’s my favourite jacket!

Ming: Well it makes you look a bit like a hippy.

Me: I’ll have you know it was a very expensive jacket and everyone else loves it!

Ming: They must have very poor taste then.

Me: Well thanks a lot, Ming, for the vote of confidence! I had wanted to be like a kind of rainbow today for Anthony’s sake.

Ming: Oh! Sorry, Mum. In that case your outfit makes perfect sense but it is TOXIC to the fashion industry, just so you know.

I couldn’t stop laughing on my way into the nursing home and wondered if Ants would have the same reaction. So, on entering his room, I asked him how I looked.

Anthony: Messy.

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On-line/off-line dilemmas

With the blog I write here (we can just forget about other blogs I hoped to establish ha!) I really don’t quite know, or even remember, how it all began. Okay so it was my friend, Nathalie, who first suggested a blog so I began to write one and even included photos.

Fast-forward to now and I have learned a lot about the politics, joys and disappointments of blogging. WordPress is a blog-site I would recommend to everyone and I have had the most wonderful fun, made friends, and connected with people and groups who share their photos and stories beautifully.

But I just can’t keep up with reading, commenting, replying and so on; the blogdom for me has become a bit of a problem. I so admire people who CAN keep up and feel really guilty for not replying to comments etc. My gratitude to blog friends is difficult to describe; how people who are unknown to me have become known friends – extraordinary!

Anyway, I’ve decided to go off-line for a week or two just to remind myself what it feels like to be off-line. Oh yeah, and I’m beginning to ‘get’ Tolle’s NOW thing!

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The weird experience

The other day I met one of my brothers, BJ, for lunch at the restaurant where Ming works so Ming took his lunch break at the same time. The three of us talked, ate, and laughed together and then, just as Ming was about to go back to work, he told us that on his way into town that morning, he had lost control of his little car on a big roundabout and it had spun full circle on the newly wet roads (it is autumn here so we’ve had some rain).

Ming said that a truck, and its driver, slowed down and witnessed his near-accident but luckily there was no other traffic as it was very early in the morning. Okay so BJ and I digested this information as we finished our meals then we went our separate ways.

At the time, I didn’t quite process that Ming had nearly been in another car accident/caused another car accident/come out of a potential car accident alive/not injured anyone in a car accident that was his fault … and that everything was okay … until I got into my own car to go to the nursing home. I began to perspire….

It was a cool day but by the time I got to the nursing home I was quite hot. I went to sit with Anthony for awhile before going on duty and, as his room is always so hot, because he feels the cold so badly, I thought my perspiration was due to that.

An hour later I was on duty in the dementia cottage and absolutely drenched in perspiration – every single strand of my hair was wet and the carer I was working with probably assumed it was menopause.

Anyway, I did my shift, sweatily and with no conscious thought of Ming’s near accident, then went home, still so drenched in perspiration that I had to put the air-conditioner on in the car even though the weather was cold. Just before I knocked off, Ming texted me saying, “home safe” and I wondered why he would do that because I had completely forgotten about his near-accident experience!

When I got home, Ming came out to meet me as he does and had all of the outside + garage lights on. I got out of the car and this was our conversation:

Me: Ming, I have had one of those sweat attacks – hyperhidrosis or whatever. Look at me – I am drenched!

Ming: Me too, Mum – me too! I was shaking and nearly crying when I got to work and sweating all day.

Me: Is that why you texted me you were home safe?

Ming: Yes! I thought you’d be worried.

Me: To be honest, Ming, I forgot about it.

Ming: So why are we both sweating?

I am quite interested in the fact that my mind didn’t absorb yet another close call in terms of Ming’s safety and yet my body absorbed it like a leaking sponge!

Will the car accident that Ming caused ever leave us? It has strengthened some relationships, weakened other relationships and probably mystified all of us in the ways in which it has affected us, individually – the nephews who went to the scene of the accident, for example; the mother who was overseas when it happened; the guilt we probably all feel for somehow allowing it – I don’t know anymore.

What I do know is that I am grateful, every single day since the accident, for the fact that every single person assaulted by that accident is still alive, still able to flourish, still able to overcome the obstacle of that terrible memory, still able to be.

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