Parkinson’s disease | jmgoyder

Small mercies

by jmgoyder

I have just found out that my lifestyle assistant/occupation therapy role in the dementia house of the nursing home where I work part-time will now allow me to feed those residents who can’t feed themselves. I will also be allowed to serve food and drinks (previously a no-no due to the risks of choking/dysphagia) but now that I have seen the training dvd twice, and filled out the dysphagia quiz/questionairre, I am allowed to help, rather than hover, during mealtimes.

Not only that, the three of us who alternate in this role have had our 3-6pm shifts extended by an hour – to 7pm – which is a wonderful idea because it will allow for a more relaxing atmosphere before and after meals.

I am still finding my feet in this job and today I felt a bit at a loss when the wheelchair walking was limited to inside (due to the heat – 36ish) and, after taking F, Y and B through the inside of the complex, from house to house, I came back to find that M’s daughter had begun a very successful table ball game (rolling a plastic ball to and fro).

M’s daughter is really competent with this game thing, whereas I am still a newbie and not very good at playing games, so I am learning a lot from her. She visits her mother every single day at the same time and when I see her I feel relieved to have her bingo expertise!

It is hard sometimes to find ways to provide entertainment because I am pretty hopeless at card games and jigsaws and arts and craft; I much prefer a conversation and today B and I had a hilarious one.

E, the OT boss, says that to be unhurried is good and to go with the flow is even better but it is harder than I thought it would be to just relax into this role. The unpredictability of how each of the ten women feel each day from 3pm is, of course, the governing cue and if someone is anxious she is the first person I comfort either with a hug or a walk or a conversation. Today, S. was, as usual, crying so I said, “C’mon, S, it’s not that bad!” And she looked up at me, bared her teeth and said, “Okay, Mum!” We all laughed – residents and staff.

B said “Told you so” in her droll way, Y said “Leave me aloooooone!” and J, who hardly ever shows any feelings, smiled at me just before I was finally allowed to give her dessert.

Small, wonderful mercies!

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Frolicking?

by jmgoyder

Ming (our now 21-year-old son) is a bit of a character. He is loud and I mean LOUD, opinionated, sensitive, angry and has a biting sense of humour. He comes out with the most extraordinary statements, loves his friends ferociously, is a know-all, and often refuses to conform.

Due to these varied, sometimes contradictory, attributes, he and I are quite often at loggerheads about this and that, and these tiffs can be extremely unpleasant and we end up having to agree to disagree. But one of the wonderful things about our mother/son/dad-in-the-nursing-home relationship is our shared love of laughter.

For example, after a recent row (whispered because we were in the nursing home), Ming provided a solution which you can see at the end of this short transcript:

Anthony: Don’t fight, you two.
Me: I’m not fighting – he is!
Ming: Dad, she is … argh!
Me: Shut up, Ming, you’re the one with delusions of grandeur.
Ming: Okay, I’m leaving.
Anthony: Don’t go, Ming. Settle down, Jules.

Intermission: Ming and I sit down on either side of Anthony silently seething.

Me: What are we arguing about, Ming?
Ming: Well, you …. I don’t remember but you are …. wrong (trying not to smile)
Me: Okay, so you are always right?
Anthony: Steady on, Jules.
Ming: Don’t always cry, Mum! I’m sorry.
Me: I’m not crying – I’m smiling, you idiot!
Anthony: Ming, give her a hug.
Ming: I love you, Mum! I wish we could stop fighting.
Me: It’s probably normal, Mingy – it’s okay. We’re all tired.
Anthony: That’s better, you two.

Ming: Oh why can’t we all just frolic in the meadows?

And that’s where the laughter began – and I am still laughing!

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No sweat!

by jmgoyder

In order for this post to make sense I need to remind people that last summer I developed a condition called ‘pompholyx’. It initially announced itself on the sides of each of my fingers in the form of tiny blisters that, due to their itchiness, I scratched, so for weeks, then months, I battled with blistered and/or scabbed hands (and, oh yeah, my left foot).

It nearly drove me mad and none of the various cortisone or anti-fungal creams worked very well. I researched my condition and found lots of gross photos and horror stories of frustration posted by other sufferers, all of which I showed my doctor. One common denominator, in terms of cause, was excessive perspiration: hyperhidrosis.

During the Australian summer, temperatures often reach/exceed 40 degrees C which means that for several months of the year people tend to look rather moist, including me. Then, last summer, my perspiration went into overdrive and my hands, head and face became rivers of volcanic overflow so much so that, if I shook my head the way a dog does everyone near me would be sweat-splattered. The worst thing, though, was my blistery hands; the little blisters would become huge blisters and, yeah, they leaked too. I felt as if I had been catapulted into some sort of science-fiction parallel universe where the sweaty people were excluded. In other words it is a very embarrassing condition.

When winter arrived (autumn is almost unnoticeable here) the relief was enormous for me. As the rain poured and poured, I stopped pouring and my hands nearly healed. But then (a couple of months ago) summer came back and so did the hyperhidrosis and pompholyx.

Interestingly, this second bout has seen a worsening of the HH but a diminishing of the PX. But I went to my doctor regarding both and he is going to research how we can stop this embarrassing, excessive perspiration. Good.

I then went to a podiatrist who looked at my left foot (the sores resemble burns) and she recommended an over-the-counter antiperspirant called ‘SweatStop’. Well, I couldn’t find that exact brand but I did find a few products containing the active ingredient aluminium chlorohydrate so I bought them.

Well, it WORKS! Once applied to the affected areas, it stops the sweat glands somehow. It’s a bit uncomfortable and has made my previously sweaty hair dry and brittle and my hands dry and scaly but it’s a hell of a lot better than dripping my way into every single day.

The most hilarious thing about this is that Anthony’s Parkinsonism has affected his internal thermostat so severely that he is ALWAYS freezing, even in the middle of summer! The first thing I do when I visit him is to turn the air conditioner off, put a jacket on him and then a rug on his knees, by which time I would ordinarily be oceanic with perspiration. Now I’m just a little bit drippy!

No sweat!

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Silence

by jmgoyder

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

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Anthony book 1: Three years

by jmgoyder

January 9, 2015

This week marks the third year that Anthony was admitted into the nursing home for respite and never came home again.

Except to visit. The shock of it.

This is what I wrote in my blog at the time:

Jan 11 2012 Breaking

Yesterday, Son and I broke the news to Husband that his two weeks in the nursing home lodge might need to be extended, might even be indefinite and that this has been recommended by three of his doctors. Son reinforced this by starting a verbal sparring match:
Son: We can’t look after you anymore, Dad!
Husband: Well, you’re not much of a son, are you!
Me: C’mon, guys, give it a rest.
Son: Dad, can’t you see you need nursing care?
Husband: I’ll get better – wait and see. Don’t give up on me. Where’s my wife?
Son: Her name is Julie, Dad, and she’s crying in the bathroom as usual.
Husband: What the hell is she doing that for?
Me: Sorry, just had to go to the loo.
Husband: Are you okay? You look terrible. You really need a haircut.
Me: I know.
Son: Argh – I’ll meet you out in the car, Mum. Bye, Dad.
Husband: Wait – give me a hug.
Me: He’s okay; he’s a teenager.
Husband: Why is he so ….?
Me: He’s angry.
Husband: I love you two more than life.
Me: Us too.
Husband: You better go.
Me: Yeah, the brat’s waiting – give me a hug.
Husband: See you tomorrow?
Me: See you tomorrow.
Breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking…. br

Perhaps it is this strange anniversary of almost unbearable emotional pain that has rendered me numbly bleak (bleakly numb?) over the last few days.

Lately, the shiny wonder of having discovered different ways of happily being in the nursing home for so many hours per day with Anthony has begun to show its first lace-like signs of rust.

I AM SO BORED!

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Up hill and down dale

by jmgoyder

One of the things I do during my afternoon shifts at the nursing home is to take wheelchair-bound residents for a ‘stroll’ around the grounds or, if it’s too hot, through the facility, or both. Until I got this job, and before volunteering, I wasn’t familiar with the layout but now I am; there are four ‘houses’ each with its own name, but all almost identical in design (kitchen and dining room in the centre, living rooms x 2, patio area and garden, and bedrooms all private and each with an ensuite, at the opposite ends of a hallway.)

Anthony is in the ‘high care’ section at the centre of the facility and this is more hospital-like in terms of design.

The ‘Dementia house’ (obviously not called that, and named after a significant person, but, for the sake of privacy, let’s call it ‘The Lodge’) has ten permanent residents, all women, most of whom are mobile but three of whom require wheelchairs to go any distance. I absolutely LOVE going for a walk with these beautiful women up and around the curves and corners and small hills of this facility, inside and outside, down hallways, through gardens, into other ‘houses’ to visit.

I only do a few short shifts per week (3-6pm) and the job description is “Lifestyle assistant” so am still learning how to be more creative with activities, games (not my forte!) But what an absolutely WONDERFUL job! To be able to socialise, converse, have fun with people who have dementia. The thing I like to do most is going for a walk and sometimes this is hilariously rewarding like the time I took Suzie past Anthony’s room, and we waved (even after just a couple of weeks, Ants has come to expect this and waves back), and Suzie said to me, “Poor old bastard”.

I retorted: “That’s my husband, Suzie!”
“Oh sorry,” she said, chortling with mirth.

Okay, back to the up hill reference: Fiona is heavy and wheel-chair bound so I get a bit terrified now because the other day, as we were going UP the driveway, her wheelchair decided that DOWN might be better and I briefly lost control and we landed gently into a rosebush, unharmed. Fiona, who constantly hums a refrain of a hymn I am yet to recognise, giggled, sitting regally in her wheelchair while I struggled with thorns.

All names have been changed to protect the privacy of these people with the exception of my beautiful husband, Anthony, who, when I was wheeling someone past his room the other day and waving as we always do, called out, “You’re getting faster, Jules!”

But, by the time I am finished my shift and go back to Anthony, he is so confused and sleepy that saying goodbye isn’t difficult because it is now possible to comfort him with “I am just going up to the shop to get some bread.”

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The elusive parrot

by jmgoyder

I bet you can’t even see him! Every morning I wake up and through my bedroom window I see these guys all over the giant pear tree but as soon as I venture outside with my camera they hide!

I’ve never seen this variety of parrot here before but then again my observation skills are not well honed and it may be that I have mistaken this breed of parrot for the very common ‘Twenty-eight’ parrot. Here is a link to information about the 28 http://www.birdlife.org.au/bird-profile/australian-ringneck

Unlike the 28, this elusive parrot is multi-coloured – greeny blue at first glance but with an underside of red, yellow and sometimes a red cap – absolutely beautiful! I’m going to keep on trying to get a decent photo but it is difficult to see them in amongst the pears.

It feels like a bit of an adventure to me – figuring out what kind of parrot this is, and training myself in the art of observation (and getting up early again, early-bird-catches-worm and all that!)

Once upon a time I would have been shocked at the idea of bird-watching, picking flowers, noticing the sunset, growing tomatoes (okay well I grew two before they died), cooking a curry from scratch, listening to music without doing something else at the same time. I would have thought what a waste of time! But now all the wing flits, the snow of wattle blossoms on the lawn, the aroma of a simmering curry, and the constant squawking of the crows, peacocks and this elusive parrot – all of of this life stuff, simple, small, daily details – makes me appreciate every single moment I have left with Anthony.

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Christmas Eve’s eve

by jmgoyder

Well, it’s the day before Christmas Eve and I am finally ready to be festive. My rather blah mood was transformed into enthusiasm after having breakfast with my mother the other day because we went shopping together and I found some things that I hope Ming will love even though he ruled that it should be a strict 3-gifts-per-person Christmas. Unfortunately I take great pleasure in breaking Ming’s rules so there are now 20 presents under the new little Christmas tree he bought. I thought that was a good number since he is still (until January) 20 years old.

Oh how I miss the pillowcase years (a habit inherited from my parents in which an empty pillowcase was placed at the end of each of our beds and on Christmas morning would be filled, rather miraculously, with presents). Up until just a few years ago, I would send Ants and Ming to bed and would spend the late hours of Christmas Eve wrapping presents and putting them into an identical pillowcase (just in case Ming woke up). Then I would go to bed but wake up at around 4am to swap the empty pillowcase with the full-of-presents pillowcase. Alas, those exciting, magical days are long gone. Last year we didn’t even ‘do’ Christmas because we were too sad about this and that and, until a few days ago, I felt the echo of that sadness and an inability to be bothered.

Then, all of a sudden, a wave of hyperactive nostalgia hit me and I was filled with the energy of what Christmas really means – the birth of something/someone miraculously new – a Jesus moment, the memory of when Ming was born, a newfound excitement about seeing Anthony every today, so ….

…. I decorated Anthony’s nursing home room and sticky-taped old and new Christmas cards on his mirrors and pictures, draped the clock with tinsel, decorated the rose tree I bought him the other week, that looks real, with baubles and wrapped Ming’s presents in his room. You see, we are having Christmas in the nursing home this year; it will be the first year that he hasn’t been home for Christmas and it wasn’t until yesterday that Anthony realised this.

Ants: I’m a bit taken aback.
Me: Why? What’s wrong?
Ants: I thought it would be at Bythorne (the name of our farm).
Me: Are you kidding? It’s too hot and the flies are terrible out there! Anyway I like it here better! Don’t argue!
Ants (smiling at my sternness): Okay, you win.

Today I will wrap Anthony’s presents in his room while I face him towards the window so he won’t see; then I’ll sticky tape more cards around his room, then we’ll have a small glass of champagne together with a bit of mango (a great combination I discovered the other day).

Tomorrow night, various members of the family who can make it, will meet at my mother’s place for the traditional Christmas dinner of turkey, ham, Harvard beets (my mother’s specialty) etc. but I won’t tell Ants about this because it would be impossible for him to join us now that he is so incapacitated physically.

Then, on Christmas morning, Ming and I will open our presents to each other, saving a few to take into the nursing home at around 10am where my mother will join us at noon for my crayfish cocktail and some champagne. At 3pm I will head off to the dementia wing for my afternoon shift, Ming and my mother will go home, and at 6pm I will go back to Ants’ room to say goodnight.

A ‘Jesus moment’ – over and over and over again.
Amen.

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Applying for a job

by jmgoyder

As many of you know, I recently applied for a job at the nursing home where Anthony has now lived for nearly three years. The job is that of ‘lifestyle assistant’ in the dementia wing/house, a role I have been learning over the recent weeks of volunteering. It is a three-hour shift, between 3 and 6pm, often a time of restless agitation for people with dementia as the sun goes down (Sundowner’s syndrome).

It was such a strange experience to be interviewed on Tuesday by two women who I already know so well – the Manager and the Events coordinator – but I still said “lovely to meet you”, which made us all laugh my nervousness away – well, sort of! But then I answered some of the questions clumsily, ignorant of the fastidious rules that have come into play since I last worked in a nursing capacity over 20 years ago.

So I was pretty sure I muffed my interview up and almost felt a sense of relief, but I couldn’t help hoping. Anthony knew about my application and interview but was a bit unsure about what was going on (he is not in the dementia wing) so when the Events Coordinator came into his room today and asked if she and I could have a chat, I thought she was just going to tell me I didn’t get the job.

And that’s how she started:
Ev: Julie, about that interview the other day (pulling a looooong face)
Me: Yes? (trying to look nonchalant)

But this is how she ended:
Ev: You got the job.
Me: What?

After that I twirled around Anthony’s room in a state of glee and, because I know so many of the staff and residents anyway, it’s been a joy to whisper, ‘I got the job!’ and Ants said at one point, “You are wonderful, Jules”.

Note: This is first post since my computer died and my computer whiz guy has salvaged everything onto a usb thingy. In meantime I have bought myself a Macbook – brilliant!

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The peacock dance

by jmgoyder

Every morning at around the same time, King and Prince do this incredibly synchronized dance next to the water tank. Usually I watch them from the bedroom window but today I went out to take some photos and when they saw me they seemed to put some extra effort into their routine. A couple of the females came up to me in the hope of bread but when they saw I had none, they turned up their beaks as if to say ‘well you’re just as useless as those two fools flirting with the water tank.’

The peahens’ indifference to the peacocks’ efforts is hilarious to watch and it is a wonder to me that any chicks are produced at all! Anyway, I watched the peacocks dance for about an hour (yes they can do their routine for well over an hour; it must be exhausting), then I came inside with a big smile.

I will take the photos in to show the women in the dementia wing of the nursing home where I volunteer on the weekends between 3 and 4pm, and to show Anthony of course.