dementia | jmgoyder

Attraction

by jmgoyder

Attraction is a weird thing because, even though this ‘pull’ is usually to do with the romantic urges of the young, it still has a very powerful influence on the confused emotions of the aged.

Many of the ten women in the dementia house ‘see’ staff and/or other residents as men, possibly because most of us have short hair. So there are often small cries or salutations to ‘Joe’ or ‘Fred’ or ‘Henry’ and we (staff) have to loom close to cover the invisibility of those absent presences. There is no strict rule about how to answer the question of ‘where is Richard?’ but most of us go with the flow and say that he will be back soon.

The doll thing used to give me the horrors because it seemed so totally odd, even patronizing, but I have changed my mind now due to the need many of these beautiful women have – just to hold a baby again.

Attraction: a weird and wonderful experience of opposites, failings, clumsy sentences, beautiful, unusual, extraordinary human beings but mostly a desire to know that interesting person better.

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Jigsawing Parkinsonisms

by jmgoyder

When most people think of Parkinson’s disease, they think of dyskinesia which is the involuntary movements, tremors and tics that are symptomatic of the disease. Anthony’s version (called ‘Parkinsonism’) is not like this. Instead, his disease is characterized by bradykinesia – the chronic slowing down of movement.

Big words to match small, sometimes unnoticeable, symptoms. To begin with, many years ago now, I deliberately tripped over these words and many, many more – like ‘idiopathic’, ‘hypokinesia’, ‘ataxia’, ‘dysphasia’, ‘mirographia’, ‘akinesia’, ‘palilalia’ – just as Anthony was undeliberately tripping, literally, over his own feet. I didn’t want to know what those words meant back then; I didn’t want to know what was coming. The glossary below is for those who are curious:

http://www.webmd.com/parkinsons-disease/parkinsons-glossary

The first signs were subtle like Anthony’s inability to open the vegemite jar, and his reluctance to drive the car. But then the signs became more dramatic: Anthony’s increasing stoop, strange gait, the drooling, getting stuck in the back yard and being unable to walk back to the house, the hallucinations, me coming home from the local shop to find him face-down in the vegetable patch, Silver chain home assistance, hospitalisations, drug experiments, nightly toiletting shifts with Ming, Anthony’s apologies, his gradual loss of control over his body, his shame and frustration….

All of these things jigsawed into each other crookedly, violently sometimes; we could not get the jigsaw back together again no matter how hard we tried, because already there were too many pieces missing. A simpler jigsaw needed to be built and learning what those many big words meant has helped frame the centre of this new jigsaw, the centre being Anthony himself of course, and his incredible resilience and acceptance.

One of the most wonderful things that has happened lately is that just when I thought Ants had become totally immobile, the staff told me that his nephew, P, visited on the weekend and Ants was able to use his walker to go outside into the sunshine with P. This nephew visits Ants every weekend, but he doesn’t do this out of duty, he does it because he loves Anthony (and I have yet to meet anyone who doesn’t).

Another wonderful thing is that just when I thought Ants had completely lost his ability to speak coherently, I arrived and rushed to give him a kiss yesterday and he smiled his newfound smile and this was our conversation:

Anthony: You are a wonderful person!
Me: Why?
Anthony: Well, you always find yourself in the most extraordinary places!
Me: What – like here?
Anthony: Yes! You always find me, Jules!

The fact that Anthony’s eloquence, mobility and ability to smile all seem to have come back to some extent, after a long period of struggling with all of these things, is quite strange. I write down all of his extraordinary sentences and am thrilled when he can actually walk; as for the smile, it is almost as if my determination to get that brilliant smile back via any means – including slapstick antics, banter, his favourite comedy series, and just laughing my raucous laugh – has somehow tickled his facial muscles into action again. And, like any exercise of any muscle, the more Anthony smiles, the more able he is to smile. Ming has noticed this and so have the staff and everyone is surprised and delighted.

Does this mean Anthony is getting better? Of course not, but it’s a very interesting turn of events made even more interesting by a conversation I had with a resident whose room is two doors away from Anthony’s. She beckoned me over to where she was sitting in her wheelchair and whispered loudly, “I’ve heard a rumour that Anthony is getting most of the attention these days and is the most popular, but don’t let it bother you because we are all treated well.” Then she guffawed enigmatically and I have yet to decode what she meant.

The other day I told Anthony about Gutsy being killed and he kept reaching out his hand to put it on top of mine.

Over and over and over again – his hand, found underneath the blanket that is always on his knees, and my hand bringing his out into the cold air of a heated room, and his hand finding my hand – a jigsaw of interlaced fingers, a smile, a repeated hand tap.

But, when I was telling Ming about this tonight he said he’d seen Anthony earlier today and Anthony was so confused and blah that he almost didn’t recognise Ming!

Ming: I get it with the smile thing, Mum, but Dad was pretty bad this afternoon.
Me: So should we give up then?
Ming: No!
Me: No?
Ming: I don’t know.
Me: I don’t know either.

The above is not an exact rendition of our conversation but, rather, a compression of many conversations over many months/years. Ming, at 21, is always going to be the vital jigsaw piece that has the elasticity to fit right back in and complete the puzzle, or else wing to and fro.

Par
kins
on
ism
saw
jig

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Thank you, Jill

by jmgoyder

In all of the decluttering and re-organising of this household/farm I have made some wonderful friends like Dina (Chaos to Clear), Mike (antique valuer from Australind Timeless Wares and Collectibles), and now Jill and Ray (from Dardanup Heritage Park and Museum). I’ve already provided links to Dina’s service and will do so for the other businesses once I obtain their permission.

I have sold some things to Mike and, this morning, a ute-load of ‘goodies’ from the sheds to Jill and Ray. Jill, whose late husband, Gary, began the heritage enterprise some years ago, now runs the museum with employees like Ray, and a team of volunteers. She is a delightful woman whose enthusiasm for some of the objects was contagious today. Jill likes items that can tell a story and this, to me, is invaluable and I feel privileged to be able to contribute to the stories her museum tells.

Ray, a big, strong, no-nonsense sort of man, single-handedly lifted everything from milk cans to a marble-topped vanity, to an old ice chest, into the back of his ute. Ming and I helped of course but we were distracted by the fascinating information Jill and Ray shared about each of the smaller bits and pieces. And I was able to provide some history of this farm to them too because I knew a bit about Anthony’s family’s predecessor from what Anthony has told me over the years; I also knew various dates.

Anyway, after the ute was full, we had a coffee break and I showed Jill some of the inside-the-house stuff – the hat box full of hats; the roll-top desk; an antique mirror; an old singer sewing machine, the old print we found in one of the sheds etc etc. and bits and pieces of very nice, but chipped, china. Just as we’d done with the shed contents, we agreed on prices for some things and I donated others.

Here are some pics of what will now be at the museum. I am going to be allowed to write something about Anthony’s history which will be displayed in the dairy section of the museum with the milk cans. I raced into town this afternoon to tell Anthony that, if he sold some milk cans to the Dardanup Heritage Park, he would go down in history because I would write something about him.

Anthony: How much money?
Me: Heaps!
Anthony: We need to check with xyz.
Me: Rubbish, Ants – they are your milk cans!
Anthony: Okay….

Okay so I am making some money from this massive cull, but I am also making friends with some really knowledgable people who know the difference between silver-plate and sterling silver (surprisingly difficult to tell sometimes); antique and just plain old; rare and common. I don’t even think Anthony would have known what was in the sheds; after all, he came here at 23 and proceeded to milk cows nonstop for decades.

The most hilarious thing that has happened so far is to do with the old copper washing machine that the heritage people were interested in. I got some advice from someone who said it could be worth $1,000 so I emailed Jill a couple of weeks ago with that quote and she didn’t reply so I got all paranoid-worried and apologised if the price seemed inflated. I subsequently got advice from Mike that it would only be worth $200 max. How embarrassing! But today, we all realised that the stupid copper was cemented to the floor of the wash house so would be impossible to retrieve anyway. Lots of laughs!

Me: Do you want me to get the Dardanup Heritage Park people to come and have a chat with you about the past?
Ants: With Ming too?
Me: Yes.
Ants: Good idea, Jules.

I am not sure how the same heart can splinter but still sing at the same time. This describes my paradoxical experience of the last several weeks since my decision in January to tackle the enormous job of decluttering, selling, finding, giving, keeping, organising over a century’s worth of stuff.

It isn’t over yet; there are still the old photos and documents to get through but it is a beautiful thing to have clear spaces that hold their history inside the dust of imagination.

Thank you for today, Jill – thank you for the hug.

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My dad’s birthday

by jmgoyder

Today would have been my dad’s 94th birthday if he had lived. He died when my brothers and I were teenagers so he never saw any of our children who nevertheless know him as Granddad. My mother was only 43. Dad was only 57 and died in Intensive Care at the local hospital. He had been admitted having suffered two heart attacks and was recovering when he suffered a third fatal one. The shock and grief of that day is something I will never forget especially as I was on the other side of Australia at the time, in Sydney.

The following portrait was done of a photo taken of Dad a couple of years before he died. We all have the photo and the portrait and my youngest brother even has it tattooed on one of his arms.

Herbert Henry Brinsley Lane, who went by the name of Brinsley but was most often called Brin, was a tall, well-built man who had a presence. He was known for his eloquence and his strong silence, was not particularly gregarious, but very compassionate and generous. His love for my mother is the lens through which I remember my childhood.

He had a Charlie Chaplin way of standing which, as a child, I tried to imitate, and a habit of talking to himself when trying to figure anything out. A strict father, he taught us all manner of manners, especially table manners! But he was a gentle giant.

A radio announcer and high school teacher at Sydney Grammar School, Dad made the extraordinary decision in his early 40s to embark on chiropractic studies and thus began our travels – first to Canada (I was 8) where he completed his chiropractic degree, then to Papua New Guinnea (I was 12) to work as a chiropractor on a mission in the highlands, then to Western Australia (I was 15) where he set up a practice. He was a wonderful chiropractor and if patients couldn’t pay, he would accept milk or apples as payment.

Not long before he died, I was on the phone to him about how much I hated the college I was at in Sydney and, despite being a godly man he told me to come home and to tell the college people to “go to buggery!” Those were his last words to me, unforgettable in the way they still make me laugh, and cry, in that I didn’t make it home in time to see him alive for the last time. At the time of the phone-call, there was no indication that he was ill.

In my writing room, I often look up to my right at the portrait of my father and, underneath, a more recent one done of my mother.

Significantly, Dad approved of Anthony when nobody else did, including Anthony! After all, I was eighteen and Ants was 41. After Dad died, I went back to work for Anthony’s mother, Gar, and the rest, as they say, is history.

I often feel the presence of my dad: when I am having lunch with my mother; at family get-togethers; in the nursing home with Anthony; during moments of hysterical laughter with Ming; during those unexpected moments of intense grief; and when I accidentally speak with my mouth full. Sometimes I imagine that Dad is there/here with me/with us, smiling proudly.

Happy birthday, Dad.

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So much for the autumn hiatus!

by jmgoyder

Well my autumn hiatus didn’t last long did it! Neither did my ambitiousness haha! I had another look at the full-time behaviour consultant job description and realised that although it seemed a perfect fit for me, there is no way I could do it and keep my job at the nursing home. More importantly, there is no way I could do it and spend enough time with Ants. I did email the association asking if it might be possible to job-share the position but I haven’t heard back yet. There was a public speaking/teaching component to the job but there were also a lot of administrative duties (of people and paperwork and policies) and the latter does not appeal to me in the least! I’m much better at being bossed than being a boss.

So that’s that for the time being – maybe down the track I will do something like that but in the meantime it’s back to writing, including blogging, for me. And I discovered a wonderful program yesterday that will convert your blog into a PDF document and it’s called blog2print. In just an hour or so and for less than $100 I was able to convert 2000 pages of blogging, from 2011 to now, into seven PDF documents inclusive of photos. For more money the program will also convert your blog into a hard cover book, or books, but I didn’t want that because I want to be able to edit and revise and rewrite all those blog entries into a book about our personal experience with Parkinson’s disease and dementia. I had already begun the tedious job of copy/pasting bits into a word document but it was taking forever partly because of having to read the blog backwards and getting confused with dates etc. It wasn’t until I googled “how to turn a blog into a book” that I discovered blog2print and other programs that will do what would take hours and hours manually in just a few clicks – extraordinary!

Anyway this discovery also reminded me of how much blogging has become a part of my life. Not only is the camaraderie between bloggers a fantastic source of joy, but if I hadn’t written all of those posts I never would have remembered the chain of events of the past few years. I guess what I’ll do now is to print it out in 50-page sections and do the hand-written editing in the nursing home with Ants, then come home and finish the job on the computer. That way I can add material retrospectively.

Also, in anticipation of a blog break, I suddenly felt quite bereft! It is such a great way of keeping a record of things that can easily be forgotten – especially conversations both with Anthony, the women in the dementia house, and with the Ming.

For example, he rather reluctantly came to find me at work the other day and I let him into the dementia house and introduced him to the ten women who he proceeded to charm easily, simply because he is a male, and young! Oh I am so relieved not to be going for that behaviour consultant job. I work this afternoon and I can’t wait! I have never felt like this about any other job and I am very much ‘at home’ in my OT role now. Even though none of the women remember me, I am greeted with welcome smiles and the oft-repeated “Oh you look so familiar. Have we met before?”

Anthony doesn’t remember who any of the staff are either and the other day introduced me to one of the carers by saying to her: “Have you met my wife?” She and I exchanged a grin and a ‘yes’; after all, we have known each other now for over three years.

Blogging helps me to remember and record these tidbit gems, these moments of pleasure and humour in amongst the pain of illness and age. And autumn is a good time to write and be because it is too rainy to go for a bike ride, Mr Tootlepedal!

It might also be a good time to convince Ming to get himself some new shoes.

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Autumn

by jmgoyder

My clouds hug the sky

cockatoos caw out their joy

and the rain giggles.

Just a little haiku to celebrate our autumn. Every evening when I leave the nursing home, I drive past a spot on the edge of town where hundreds of white cockatoos fill the trees like giant snowflakes, and create a raucous cacophony. They are so loud, it can be alarming if you don’t know what the noise is but I love it! I am not quite sure why there are so many in that particular spot as there are none on the farm; there are plenty of other parrots here but not the white ones. Interesting. Well it is finally raining and the brown paddocks will soon be green again! The faltering wormwood will come back to life, the five acres of lawn will need mowing around the house and everything that looked dead will be reborn (okay, except for most of the roses!) The wormwood hedge stretches from where the house is right back to where Ming’s shed is. I remember the days when Anthony trimmed it, then the days when Arthur trimmed it, then the days when Ming said he would trim it, and the days when I thought about trimming it, but, alas, all of those days are gone. Autumn seems a good time to take another blog break so that I can concentrate on some other projects including applying for a job as a behaviour consultant with a local Alzheimer’s Disease organisation. It might happen and it might not but it would be a wonderful opportunity to share some of the lessons I have learned about dementia and communication over the years, including what is happening right now with Anthony and me. It is very hard to see someone who used to be the life of the party reclined crookedly in an armchair in a nursing home. It is also very hard for me to find the words to adequately express how much I love this man, my husband, Anthony, without resorting to cliches. Hence the concluding haiku:

My sky hugs your clouds.

The birds are oblivious.

You hold my small hand.

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Unfinished conversations

by jmgoyder

During my 3-7pm shift today (called ‘the sundowner shift’) I overheard the following tidbits of conversation between one resident, Anna, and various other residents.

Anna: You’ve spilled your food all over yourself!
Sheila: So? Mind your own bloody business!

Anna is a beautifully groomed, very fit and mobile woman in her eighties, but she suffers terribly the loss of her husband because she asks for him nonstop. Most of the staff will tell her that he is busy on the farm and will be in later but, as this is something that has to be repeated over and over, a couple of staff will sometimes remind her gently that her husband is no longer here – that he died. Anna’s silent acceptance of this truth is hard to witness but thankfully her grief is short-lived as she collects her handbag, powders her nose, applies lipstick, and asks again when her husband is coming to pick her up.

Anna: My husband should be coming to pick us up soon for church. Is yours coming along too? We better get ready….
Penelope: I don’t really know if I … my son maybe … he’s the one with the, with the ….
Anna: How’s my hair? Do I need any more lippy? Come on girls, up you get; it’s getting late.
Penelope: It certainly is! We can do it when the time comes over the you know that thing I was telling you….

Of the ten residents in the dementia house, Anna is the one who, on first impression, seems absolutely fine. It is only when you get to know her that her dementia, and associated agitation, becomes apparent. Tonight, after dinner, when most of the residents had been helped by the carer into their pyjamas and dressing gowns and were watching the television, I began to make supper (tonight’s was milo and bananas or biscuits, quite a popular combination). Anna thanked me a few times for her ‘delicious’ drink and gave me a beautiful smile. She seemed so much more content than usual, but, with only six shifts per fortnight, I can’t possibly know what is usual apart from hearsay.

Anyway, I was delighted to overhear this:

Anna: They’re good here, aren’t they. You never have to be perfect.
Dorothy: Yes, dear, very good. Now drink your tea.

The laughter that fills this dementia house is a wonderful, wonderful thing and, in many instances, is due to the unfinishedness of conversations, like Anthony asking me today if I could wash the car in readiness for tomorrow’s trip down south. My pause was followed by “Can we talk about this tomorrow, Ants?”

Anna: Are you cold, love? Do you want me to get you a cardigan?
Ellis: (under her breath) Do you want me to get you a bullet, bossy boots?

Note: Except for Anthony’s, names have been changed to protect the innocent and guilty – ha!

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Going, going … gone!

by jmgoyder

Here are some ‘before and after’ photos of the inside of the two sheds that Dina, her assistant and I cleared the other day:

Shed 1:

Shed 2:

I asked the lovely woman who runs a local heritage park/museum to come out this morning to see if any of the bits and pieces were of interest. She arrived with the man who helps manage the park and they inspected the ‘goods’:

After some mulling and very interesting chats about what some of the once-upon-a-time objects were, the heritage park people picked out a few items of interest for which they were willing to pay, then, with the Ming’s permission (of course!) took most of what you see in the photo away and gave us double the price we would have received from a salvage yard. Brilliant!

At the same time, Dina was here for her last big job with us which was to finish decluttering Ming’s shed/home. Unlike the other day, with the filthy-old-sheds-job, she didn’t have to wear her astronaut costume.

At the conclusion of Dina’s work with Ming today, we chatted over coffee and were all a bit sad that this massive job had more or less come to an end. Now that she’s finished, I feel a bit lost in the ghostly space of things gone, not because I miss the things but because I am going to miss Dina’s regular visits and the euphoria of getting so much done!

One of the most interesting aspects of her service is her summaries and here is an example:

Goyder Services Summary Veranda & Kitchen PDF

I now have several of these summaries that span the two mornings per week, over two months, in which Dina has helped me to move forward. The ‘before and after’ photos in these summaries, and the summaries themselves, are a unique part of her service and a source of joy to me!

Going = rubbish tip (around ten ute/truck-loads now!);

Going = given/sold to interested people/family;

Gone = the feeling of being overwhelmed!

Thank you Dina – ps. Can you help me with the odds and ends left from our work so far?

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The gifts

by jmgoyder

Well I got my bangle! On our 23rd wedding anniversary a couple of days ago, I rushed in to the nursing home with my gift to Anthony of two bananas and asked him if I could have a silver bangle to add to my collection.

As he consumed the bananas, he looked at me quizzically and asked one of his daily questions: “How much money is in the bank?”

I gave him an inflated estimate and he said, “$3,000, but it has to be a two-door, not a four-door.”

“What the hell are you talking about?” I said.

“The Torana,” he said. [Long story – he used to have a Torana A9X which we unfortunately sold before it became a valuable collector’s item and recently our friend, D. had brought him some laminated photos of the vehicle + a couple of Torana magazines.]

“I’m not talking about a car!” I exclaimed, “I’m talking about a silver bangle!”

At the same time my mother arrived with anniversary presents for both of us – a beanie she’d knitted for Ants and a packet of my favourite cheese, Jarslberg, for me.

“Make sure you get a really good one,” Anthony said when he realised I was talking jewellery, not automobiles.

So my mother and I went downtown to the special jeweller’s whose shop I would visit once a year after Ants got so ill, Baroque, and I immediately fell in love with this!

I asked the jeweller for a massive discount on the basis that my husband was in a nursing home and it was our 23rd wedding anniversary, and he naturally obliged. “Done!” I said much to my mother’s ~~shock/horror~~/delight.

Then we went back to the nursing home, me with my new bangle on, to show Anthony who thoroughly approved of it and my delight and gratitude. After that I went around showing all staff and residents many of whom came into Anthony’s room to congratulate us both and to admire the bangle. It was such a buzz and Ants was thrilled. (The fact that I will have to sell all the old bangles to pay for the new one is beside the point – ha!)

It isn’t very easy anymore to get that whole exciting buzz thing happening with Ants, despite the fact that his ability to smile has come back. But the adrenaline of a bit of frivolous over-spending was just the sparkle we both needed.

One of the most beautiful things about Anthony is the joy he gets out of giving me something. Ming, on the other hand, was thoroughly disapproving of such extravagance!

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Dementia dialogues 3

by jmgoyder

Okay so this post concludes the little mini-series about what I have learned over the last several weeks of working in the dementia house.

Silence is golden!

To begin with, I would take various of the ten women for wheelchair walks around the gardens and through the facility, bombarding them with my chatter and questions, pointing to flowers or pictures on the walls, or just telling anecdotes or jokes that I hoped would elicit conversations.

In hindsight, that was idiotic in many ways. Can you imagine being in a wheelchair, travelling through beautiful gardens, observing the various flowers, breathing in the fresh air, catching a glimpse of the ocean, with the person pushing your wheelchair, whose big shadow you can see on the footpath, chattering AT you, asking you questions that frighten you because you don’t know the answers, disturbing the peace of being outside?

Weeks ago, during one of these walks, I asked D how many children she had and she paused, nervously, then said, “Two or three I think.” She was embarrassed not to know the answer. Then, with S, the same question elicited sobs of “Where is my family?”

So now, unless the person in the wheelchair initiates a conversation, I just shut up and push the wheelchair and, in this way, we are both able to listen to, and appreciate, the silence of the fresh air, the smell of the ocean, the sight of the roses and other flowers.

Silence is golden!

Once back in the dementia house, there is plenty of opportunity to chat, joke, play card games, do jigsaws etc. so I am not quite sure why I felt it so necessary to crowd the quiet fresh air with my clumsy hundreds of unnecessary words. The wheelchair walks will now be done in silence.

The other thing I have learned through working in the dementia house is that touch can be a way of communicating that doesn’t rely on words or even facial expressions. A hug, kiss, hand hold, given to you by a person with dementia, is worth a zillion words – and to respond to that gesture is worth a zillion more. On the other hand, I have also learned that some people flinch at being touched, especially people who are silent, so this is something to be respected; after all, every single person with dementia is an individual. Some people don’t like to be hugged.

I am not going to write about this for awhile because I still feel that I am on P-plates, learning via my mistakes, learning how to appreciate and respect and ‘read’ silence, and learning about individual personalities.

Even though Anthony also has dementia caused by his Parkinson’s disease, I always test my ideas out with him just the way I used to do when I was writing university essays and, later, lectures. With the simple difference between a nod or a shake of his head, he continues to be my mentor despite the fact that his own ability to speak coherently is faltering fast. So learning how to read silence is a necessity.

Silence is golden!

Respect for silence is gold.

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jmgoyder

wings and things

Attraction

Jigsawing Parkinsonisms

Thank you, Jill

My dad’s birthday

So much for the autumn hiatus!

Autumn

Unfinished conversations

Going, going … gone!

The gifts

Dementia dialogues 3

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