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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The end of an era

Well today I said goodbye to the last of our geese, and the duck, Zaruma (pictured above). The first photos (below) are from 2011 when all except Godfrey were little. The latter photos show them all grown up. The reason? Too many casualties via foxes and the dogs who lately have been able to get out of their yard by hook or by crook and they attacked my beloved Zaruma the other day (that was my turning point).

So I was having to pen the birds 24/7 plus the dogs versus birds argument was becoming a regular source of conflict between Ming and me. So Ming advertised them on the internet and an animal loving couple came to pick them up at 1pm yesterday.

I was dreading it and didn’t even want to be here at the time but Ming was at work so I had to be. I didn’t want to see Woody, Seli, Ola, Diamond, Zaruma, and even grumpy old Godfrey, traumatised.

Well I needn’t have worried. Belinda and Tom arrived with a trailer and a few big cages, water containers, and when she saw my eyes fill, she gave me a big bear hug and told me to go inside while they caught “the gang”. So I did and wrote all their names on a piece of paper then made myself go back outside immediately to oversee things.

AMAZINGLY, Tom had simply gone up to Godfrey and picked him up, carried him to their station wagon and put him in a cage in the back without the slightest fuss from Godfrey! For those who don’t know, Godfrey is the gang boss and has been so protective of the others since they were little that he turned aggressive, and he BITES! But he didn’t even attempt to bite Tom.

Even though the rest are so tame I could easily have picked them up and put them in the other cage, I just couldn’t do it because I was so sad. So Belinda and Tom did it and talked softly to them to calm the more panicky ones (Woody – oh my poor heart!) and it only took around 10 minutes – smooth and gentle and I felt incredibly relieved!

Belinda and Tom live two hours away but they are better equipped, with huge yards for all of their poultry, big swimming ‘pools’ etc. so it’s wonderful to know they are going to a great place and will be there by now. We have exchanged email addresses so she can send me some reassuring photos, so I feel great about it all now.

But after they left, I cried like a baby. I will miss them and the amazing peace they brought me in the months before Anthony went into the nursing home.

      

Thank you, Belinda and Tom.
Goodbye, Gang.

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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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Up hill and down dale

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

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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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“Can I get you anything from the shop, Ants?”

This has pretty much become my exit strategy lately when leaving Ants and coming home from the nursing home. I say I am just going up to the shop to get some eggs (just as if we are home), then I ask if he wants anything, like chocolate or cake or cheese or bananas and sometimes he says yes to one or more of these items. “Don’t be too long,” he sometimes says and I promise that I will be as quick as I can. If I have been at the nursing home since 11am or earlier, I leave at around 3.30-4pmish; if I have only arrived to help him with his lunch, I will often stay until 5.30pm so I can help him with his dinner (his ability to feed himself fluxuates a lot) Occasionally, like yesterday, I take the day off and Ming visits for me, or my indispensable mother does.

My exit strategy is a ruse of course, a way of leaving Anthony that deceives him into thinking that I am coming back soon but, after weeks of using this, at first tentatively, but now confidently, I am convinced that this is much better than saying, “I’m going home now, Ants – I’ll see you tomorrow.” If I say that, I have to explain at length that he is in a nursing home and this is the kind of conversation that happens, when he is able to talk:

ANTHONY: Why can’t I come too?
ME: Because of your Parkinson’s disease, remember?
ANTHONY: But I’m getting better!
ME: I know, but you are still too heavy for me to bring home.
ANTHONY: Well can you tell those kids [the staff] to keep an eye out for me?
ME: Of course!

Sometimes this kind of conversation goes on and on and on and might be prolonged by Anthony’s hallucinations that there are dogs, cattle or even snakes in his room, all of which I have to dispel before I can leave; sometimes he is unable to speak at all and will simply grab my hand and snuggle it up to his face; sometimes he will be asleep when I leave so I tell the staff.

This afternoon, this was our conversation:

ME: I’m just going down to the shop, Ants. Do you want anything?
ANTHONY: Love – a lot of it.
ME: I’ll give you a bit now [hug] but I’ll get 100 kilos of it and bring it back soon, okay?
ANTHONY: Okay.

And he smiled his beautiful new slow smile and let me go….

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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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The new smile

For the love of smiling!

I took a photo of the avocado tree a few weeks ago and posted it on this blog, bragging about its amazing blossoms. A few days later, on climbing the tree to pick one last unreachable avocado, I got a bit tangled in the blossoms and, in untangling myself, realized they were actually the blossoms from an adjacent plum tree. I haven’t wanted to admit this until now because I am so embarrassed. I am quite sure all gardeningy people spotted my error but were kind enough not to say so. Anyway, it’s not my fault that the plum tree (or whatever it is) keeps throwing its pink-blossomed arms around the avocado tree!

I was overjoyed to spot a little peachick on the roof of the shed adjacent to the chookyard and I had a rather long conversation with it until I realized it was a twig!

I love to tell these embarrassing little funny stories to Anthony because it gets him smiling. Some time ago, it seemed that he would never smile again – not because he was sad but because the Parkinson’s has affected all of his muscles, including facial. But over time, I have learned how to elicit a different kind of smile; I use banter, loudness, crudeness and lots of vigorous hugs.

His loud, spontaneous, contagious laugh has gone and so has his loud voice as he now speaks in a kind of whispery way but I am ungentle and say things like:

Speak up, Anthony, clear your throat!
You look like a dead duck today!
Wake up!

Sometimes I catapult myself into his room, throw my arms around him and he gets such a shock and always says, “Jules, how did you know where to find me?”

Or, if he is having a bad day with forming words, I just get his beautiful new, slow-growing smile. And when Ming enters the room, Anthony’s smile gets a whole lot quicker!

Note: Avocado trees do not have pink blossoms!

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