jmgoyder

wings and things

Wheelchair walking

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

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

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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The elusive parrot

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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.

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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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The Anthony book

A few months ago a professor friend of mine – an historian, prolific writer and a colleague from my recent university days – suggested that I might write a book about Parkinson’s Disease framed around the blog and my experiences with Anthony. The professor said that he would be happy to read whatever I wrote and that he would give me feedback.

At the time of his visit, I was buoyant with the discovery that I now looked forward to, and enjoyed, my visits to the nursing home, and was able to spend many hours of the day there.

Since then I have begun to copy/paste various bits and pieces from posts I have written since November 2011 into a document that journals the various transitions Anthony, Ming and I have made since Anthony’s permanent admission to the nursing home in early 2012, nearly three years ago.

One of the most significant things I have discovered since perusing my blog is that I would never have remembered the sequence of events, the emotional turmoils, or the ways we coped, if not for the blog.

So now, on the brink of a brand new year, I’ve decided to write the book and report progress via the blog (as an incentive!) on a daily basis. Or something like that!

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Christmas Eve’s eve

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

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

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.

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Saying ‘yes’ to surreality

Ever since I was fooled by the plum tree into thinking its blossoms belonged to the avocado tree I am much more aware of how trees that are next to each other seem to have a habit of hugging each other. Here are the photos I took of ‘the avocado blossoms’ several weeks ago. The first one shows why I was confused but the second one shows quite clearly (except to an idiot – me!) that these are two separate trees.

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Anyway, the following photo shows just how tricky these trees can be; here we have a camellia tree masquerading as a fig tree (or is it the other way around?) I showed it to one of the residents in the dementia wing the other day and she said, “What a strange tree!”

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Up close, of course, it is quite obvious that the fig tree is a fig tree and that the camellia tree doesn’t have a sense of personal space.

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Last summer I stopped watering the plants in order to save electricity on the pump; hence most of the ancient rose trees have died (despite a gardeningy person telling me it was impossible to kill roses) but everything else (palms, multiple camellias, un-fruiting orange and plum trees, silver birches, the two fig trees, the two avocado trees, the two pear trees, the lemon tree, the poplars up the driveway, the flame trees, and many other wild bushy looking shrubby things, have survived. This is probably because Anthony planted many of these at around the time I was born – over 50 years ago – so their roots are deep (you see, I have now done a bit of gardening-for-dummies research).

I guess what’s surreal is that, when I took ‘the avocado blossoms’ into the nursing home and put them in a vase, Anthony didn’t correct me and say, “Those aren’t avocado blossoms, silly!” (Actually nobody corrected me until I wrote a post correcting myself and then a friend said to me, “Yeah, I thought you’d definitely lost the plot!”)

Every single person with every single kind of dementia has, I think, has an ability to accept the surreal as real. Yesterday, during a children’s concert at the nursing home, one of the residents kept asking if the woman on my right (another resident) and the man on my left in the wheelchair (Anthony) were my parents, so I explained that one was my new friend and the other was my husband. She looked at me with interest and said, with absolute certainty, “My parents will be here soon”, and I said, “Yes.” By end of the concert she had forgotten about her parents and was fine, delighted as we all were, by the children’s voices.

I’m not sure here, but it seems to me that if someone’s reality is fractured by dementia, and their reality becomes a dreamscape of surreal thoughts, memories and emotions, maybe the best way to respond is in the affirmative, and to say ‘Yes!’

And that is why I still have an avocado tree with pink blossoms!

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Subtle changes

The fact that my daily routine now includes spending much of the day with Anthony in the nursing home means that I don’t see his deterioration except in tiny increments, day by day.

Yesterday one of our friends visited Ants and she was just leaving as I was arriving. She is the mother of one of my best friends, nearly Anthony’s age, and has her own health problems and yet still visits Anthony regularly – an unbelievably kind and generous person but today a bit uncertain.

“I don’t think he knew who I was, Julie,” she said.
“Maybe I talk too much and it upsets him,” she said.
“Can you let me know if my visits are helpful or not?” she asked.

She was quite distressed at Anthony’s unresponsiveness and wondered how I coped with going in every day. Didn’t it get me down? I told her that I hardly ever got down any more and actually looked forward to going into the nursing home. She looked as surprised as I feel about this miracle. I am surprised that my relatively newfound eagerness to get into town to see Anthony every day has been so sustainable because I was a bit nervous that it might kind of wear off!

Now I know for sure that it will never wear off probably because I’ve accepted the status quo and am prepared for what lies ahead. Our friend’s distress at seeing Ants so deteriorated yesterday, sort of chair-ridden and blank, unable to respond verbally and very sleepy, was only because she hadn’t seen him for a week or so. I guess it’s a bit like noticing how much a small child has grown if you haven’t seen that child for awhile; it’s a bit of a shock.

After our friend left, I went into Anthony’s room and said, “Didn’t you recognize M?” but he said yes he had. I could see, though, that what might have disturbed M was the increasingly blank expression on Anthony’s face which is partly due to his facial muscles not working because of the Parkinson’s disease, including not blinking (which makes him look both sad and angry), and partly due to the confusion of dementia.

Of course Anthony is only going to get worse, more confused, eventually bedridden and totally unresponsive, so I am developing a more tactile and rather boisterous relationship with him instead of pushing the conversation thing. After all, his voice is now so soft and his words often unformed, so we need to establish a way to communicate that transcends the verbal – almost like a code. This has included hand-holding, neck massaging, sitting on the arm of his chair with my hand on his head, and/or loudly beckoning him out of his slumber with a funny anecdote from the past, clowning around and bopping to music, asking him for advice with a nod or shake of his head, watching dvds of television series he used to love, laughing and being cheeky (I have a rather raucous laugh which I make the most of in order to see his slow smile), and lots and lots of hugging.

The following photo is my usual profile picture and it’s a bit of a shock to realize this was five years ago!

Julie, Ants and Ming 2009

Then I just discovered this one, obviously taken seconds after the first photo. I can’t wait to show it to Anthony later today! I hope it will make him smile my smile.

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