humour | 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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Cycling in the countryside

by jmgoyder

Some time ago I purchased the most wonderful electric bicycle. Now for those serious cyclists who read this blog, please refrain from smirking; the wonderbike can be used as a normal bike but when encountering a steep hillock, or a cyclonic breeze, it is possible to press a little button and, yeeha! the electric buzz happens and before you know it you have zoomed through these difficulties. Wonderful! Of course, you then press the button off again so that you are cycling normally and not electrically.

I recently began cycling again after a long break. On Day One, I rode down our long gravel driveway onto our small country road and, pedalling against the ferocious breeze, ventured further, turning left onto the next country road. Ah, the peace and quiet, twittering birds, happily mooing cows – bliss!

Then, just as I was about to turn right into an even smaller country road there was an explosion of noise behind me and, using my newly purchased rear vision mirror, I was alarmed to see an enormous truck behind me, approaching fast and, even more horrifyingly, when I was about to escape to the smaller country road, I saw another massive truck coming towards me from the opposite direction. I had two choices: I could keep riding, feigning nonchalance, and hope that both trucks would see me, slow down, and the drivers and I could exchange morning greetings, OR I could stop my bike, hop off and catapult onto the closest verge. I decided on the latter just seconds before both trucks whooshed past each other with a blast of horns. I waved and smiled friendlily to the drivers from my position on the ground, my arms protectively around my bike, assuming the blast of horns was a type of country road greeting but strangely neither of the drivers smiled back.

So I got up and got back on the bike and rode the short distance to the even smaller country road but, just as I was about to veer right into this same road, another enormous truck (coming out of the even smaller country road) came to a noisy halt and politely let me into the road by a narrow margin. Again I waved to the driver who grimaced back. Oh well, I thought, not everyone is friendly in the morning.

But a couple of kilometres later, after several repeat incidents of the above, I turned around, pressed the button for electricity, turned it to the highest setting, and zoomed back home, only stopping here and there for the odd truck or ten!

Anyway, the Day One experience hasn’t deterred me and I still cycle every morning up and down and all around the safest possible country road: the driveway.

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Wheelchair walking

by jmgoyder

My job as ‘lifestyle assistant’ at the nursing home, also shortened to OT (occupational therapist) continues to be thoroughly enjoyable. The shifts are only three hours – from 3 to 6pm and I do an average of six shifts per fortnight so it’s not a lot of work but hopefully I will get more shifts in the future.

The dementia “house” is set up like an open plan house with the kitchen and dining room in the centre, a sitting room with a big television, and ten bedrooms down three hallways, each with its own ensuite. Then there are a couple of separate little sitting areas as well as a lovely patio out the back, with a garden. Seven of the ten women are ambulant, some with walkers and some without, so there is a code to open the doors due to the risk of anyone wandering off.

I have now established a routine whereby I take one or two of the women for a long walk outside around the grounds and in and through the other four houses, all of which are designed in the same way except Anthony’s which is more like a hospital ward. If I come on duty and find anyone already in a wheelchair, I begin with that person and this week I started to take J. by herself because she doesn’t seem to ever have any visitors and, even though she can walk a bit she is difficult to manoeuvre and quite tall, so I use the wheelchair. I don’t think this has been done before because previously the OTs took her on short walks until one of them wrenched her shoulder doing so (J. has a grip of iron!) In the wheelchair it is possible to take her on much longer walks and she seems to really enjoy this although it’s difficult to tell because she doesn’t talk much and even when she does she is hard to understand.

I like to take her by herself for that whole one-to-one thing but sometimes one of the ambulant women comes too. We go out the locked door into the sunshine and gardens then through a small parking lot at the back of the nursing home then inside Anthony’s section which begins with a foyer, then a large activity room, down a very long hallway, saying hello to the residents in the rooms to the left and right (including Anthony of course!) then out to another garden area at the front of the nursing home, up a steep driveway at the top of which you can see the ocean, then left down a road that enters the section where the independent elderly live in self-contained units, all with beautiful gardens, around a roundabout and back to the ocean view. Then we go back down the driveway and into Anthony’s section again, turn right to go through the dining/living area up another hallway and then back down and out into another garden area, then back down Anthony’s hallway, waving to him on the way (which he finds extremely amusing) then, once outside again, instead of turning left which leads back to the dementia house, we turn right and head up the narrow driveway past two other nursing home houses and up a hill to where there are other self-contained units. Sometimes the residents will come out and say hello to us and have a chat; then we turn around and head back to the dementia house. This takes around half an hour. Once back, I pick up F. or O. or D. and begin again. And again, with different people.

One of the things I have found most difficult about these wheelchair walks is walking slowly. It’s like the way you have to walk up the aisle! I am ordinarily a very fast walker but having already frightened the hell out of two women who thought they were about to be catapulted out of their wheelchairs, I now walk extremely slowly in a smell-the-roses way (and there are lots of roses to smell because the gardens are beautifully kept).

With the weather so beautiful lately this seems to me to be the best activity and my goal is to get all ten women out and about during one shift, but so far I have only been able to get seven out and about (yesterday), because dinner is served at 5pm.

The wheelchair walk tends to calm even the most agitated of the women down which is pretty much what I am there for as this time of day is notorious for ‘Sundowner Syndrome’ an anxious time for many people with dementia who may remember it as a busy time of day, getting dinner ready etc. B. who walks without any assistance, becomes increasingly anxious about getting back to cook dinner and when is her husband coming home? S. cries a lot, and O. becomes aggressive. The long, slow wheelchair walk seems to calm these anxieties to some extent and I much prefer doing this than singsongs and card games.

The sunshine, fresh sea breeze, gardens full of late blooms, and interaction with residents and staff outside the dementia house, is, I think, the most beneficial thing I can do in this wonderful role. The fantastically weird conversations we have with each other outside create a rapport and laughter that isn’t as easy inside.

Me: Are you enjoying it out here, S?
S: Not particularly.
Me: (laughing) What?
S: You cheeky man!
Me: I keep telling you I am not a man!
S: Oh, sorry (starts crying)
Me: Stop it – I was only joking. Do you want a hug?
S: Yes, please (we hug).
Me: If you start crying again I will bop you (laughing)
S: I’ll BOP YOU, young fella!

OR:

Me: Do you want to go for a walk, Y?
Y: Leave me alone, leave me alone, leave me alooooooone – doesn’t matter.
Me: Your chariot awaits (pushing wheelchair next to her).
Y: Oh all right, all right, all riiiiiiiiight.
Me: See! Look at all the flowers, Y.
Y: Pretty. Pretty flowers, pretty flooooooowers.

OR:

Me: Do you want to come for a walk, B?
B: Oh I don’t think there’s time. X. will be home for tea soon and where are the boys? What’s the time? Do I need my lippy (lipstick)?
Me: It’s only a short walk and I need you to help me with O. (O. in wheelchair).
B. Well as long as we’re not too long. Have you seen my handbag?
Me: We won’t be long and X (deceased husband) doesn’t mind.
B: Are you sure. Could you ring him?
Me: Somebody already has and it’s fine.
B: Well I suppose it’ll be all right. Just let me get my handbag and put my lippy on.
[15 minute search for handbag]
Me: Come on B.
B: Oh I think I should stay put. X. won’t know where to find me.
Me: He knows exactly where you are and we won’t be long anyway, B.
B: Oh well I suppose so but what about money? Wait a minute darling I just have to put my lippy on.
Me: B, I really need your help with this wheelchair.
B: Of course.

OR:

Me: O. do you want to go for a walk outside using the wheelchair?
O. No, no noooo – I don’t want the red with the pink. What is this? Stupid!
Me: How do you like the sunshine?
O. Too HOT – too fast, slow down!
Me: Sorry, sorry.
O: Slow down!
Me: We are crawling now, O.
O. Oh you crazy one – crazy crazy (guffawing).

Of course there are many more conversations, lots of silences and miscommunications, but the wheelchair walking routine I’ve now established is a winner in so many ways!

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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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Everything (a poem)

by jmgoyder

When you are inside the blah balloon
floating above the world,
tossed about by moody winds

you can see everything, EVERYTHING
up, west, down, left, north, right, east, here, south, and, yes, there too!

And in between all of the circumferences, you have
a clear, detailed view
of the whole wide world, but

from the blah balloon, your view is distorted
by plastic
and motion sickness
and fear of falling.

So what do you do?
Do you stay inside your safe, up-in-the-air balloon
dizzy
disorientated
upset and shocked that in the whole wide world
you are absent?

Or do you scream triumphantly,
pierce the wall of the balloon with your un-rude finger,
fall to the ground with a THUMP

stand up,
walk,
smile

EVERYTHING

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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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What a strange Christmas!

by jmgoyder

On Christmas Eve, I sliced the ham and put it into a sealed container in the refrigerator, ready for Ming to bring to my mother’s place in the evening, then I went to the nursing home. Ming was working at the restaurant and planned to come home, shower and change and head to my mother’s while I spent the afternoon with Anthony.

Just after I got to my mother’s at around 6pm, Ming rang and said he was sick and had been vomiting and didn’t think he could come.

“But what about the ham?” I shrilled unsympathetically.
“Mum, I am really sick!” Ming exclaimed weakly.
“Can you just bring it and then you can go to bed at Grandma’s,” I said.
He agreed begrudgingly.

Meanwhile, family members began arriving at my mother’s, champagne was poured and the presents under her Christmas tree were ogled. I kept an anxious eye out for Ming and finally he arrived. As he walked up the driveway, I wondered why he had left his car in the road and why he was wearing such a strange spotty outfit. Then I realised, oh no! that he was covered in vomit.

“I just threw up in my car!” he said weakly, but ferociously. So we got his car into the driveway, he went inside via the back door so he didn’t have to see anyone, and my mother gave him some clothes to change into and put him to bed. I took the container of ham inside then got a bucket of water and tried to clean the inside of Ming’s car but it was everywhere (I will spare you the details!)

Anyway, with Ming in a bedroom adjacent to the loo, the rest of us continued our festivities while I checked on Ming periodically, who was continuing to vomit every hour or so. I felt terrible to have made him come and had to suffer his weak remonstrances of “You care more about the ham than me.”

By the time I was ready to go home, at around 9.30pm, it had been decided that Ming would sleep the night at Grandma’s.

The next morning (Christmas day) at 6am, there was a knock on the front door that woke me up and, assuming it was a recovered Ming who had lost his key, I opened it blearily only to find it was my brother! He said, “I thought you might like some company – let’s have a drink.” So BJ and I drank champagne on the front veranda, waxing lyrical about this and that and watching the birds dive in and out of the trees, including the new wild parrots I’ve never seen before. It was a fantastic hour and it actually made my day! Then BJ had to head home for his family’s 8am Christmas present ritual.

After he left, my mother contacted me to say she would bring Ming home because he was too weak to drive and had continued vomiting until 4am. So they arrived and we opened a few presents but Ming was still feeling ghastly so I put him to bed and my mother headed in to town to my brother’s place after which she was to meet me at the nursing home.

Well, the crayfish, mango, and my mother’s pavlova, were all a great success with Anthony and so were all the presents I helped him unwrap, then we watched a bit of tenor music on TV, then my mother left, then I went to do my 3-6pm shift in the dementia wing.

After I knocked off, I went back to Ants’ room and we ate the leftover crayfish (which I’d put in the staff frig.) and I went home to my no-longer-sick-but-very-weak son who struggled through the opening of his remaining Christmas presents ha!

But yesterday my mother contacted me to say she had the same thing – the gastro. and it was absolutely horrific and I was helpless to help because of contagion. I rang the nursing home to tell them the situation but that I, myself, was not affected (there is a strict rule that you don’t come in if there is any likelihood of infection of any sort). So, despite the fact that I’m not sick, I’ve been banned from coming into the nursing home until next Thursday! This means I can’t do my allotted shifts and can’t see Ants.

Thankfully, my mother is over the worst but is obviously very weak. Today Ming and I are going to hers to pick up his vomit-ridden car but, now that he has recovered, he wants to take me out for lunch first.

What a strange Christmas!

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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.