jmgoyder

wings and things

Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

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A way with words

Despite the fact that Ming always loathed anything to do with literacy when he was at school, he has a wonderful way with words and, like Anthony, often comes up with the funniest phrasing.

The other morning I was about to go in to see Anthony and, wanting to add a bit of colour to the day, now that the weather is wintery, I’d dressed in an orange shirt and a multi-coloured jacket that had a bit of orange in it. As I was about to leave the house, I had this brief conversation with Ming:

Me: Do you think this shirt clashes with the jacket, Ming?

There was a long pause as he looked at me, his brow furrowing in exactly the same way Anthony’s is furrowed.

Ming: I have a bit of a problem with the jacket, Mum.

Me: What? But it’s my favourite jacket!

Ming: Well it makes you look a bit like a hippy.

Me: I’ll have you know it was a very expensive jacket and everyone else loves it!

Ming: They must have very poor taste then.

Me: Well thanks a lot, Ming, for the vote of confidence! I had wanted to be like a kind of rainbow today for Anthony’s sake.

Ming: Oh! Sorry, Mum. In that case your outfit makes perfect sense but it is TOXIC to the fashion industry, just so you know.

I couldn’t stop laughing on my way into the nursing home and wondered if Ants would have the same reaction. So, on entering his room, I asked him how I looked.

Anthony: Messy.

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Unfinished….

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Such a strange realisation!

An ‘aha!’ moment!

The inability to get to the ‘finish line’ or the ‘punch line’ was making me utterly miserable (as well as my inability to understand/implement Tolle’s NOW concept, cope with a depressive episode, watch myself grieve for Anthony in a way that seemed premature).

But it wasn’t any of those bracketed BIG things that were bothering me; it was the fact that the few remnants of weeks and weeks of decluttering, finding history, reorganising the house/farm etc. were still here.

It was the remnants!

Old books, doilies, Anthony’s school report from when he was little, old photos of my dad when he was young, bark paintings from our years in Papua New Guinea, a thousand buttons, a pile of costume jewellery, a silk corset and bra wrapped in newspaper for 100 years, bits of china that would be valuable if not cracked, old instruction manuals from before I was born, and a whole lot of bits and pieces that must have had sentimental value for someone before Anthony was born, and maybe even before Gar, his mother, was born.

So today I began this last phase by going to the dump with Ming and unloading a very full ute-load of rubbish; then I proceeded to use a knife to cut up a very big carpet mat underneath my bed (it had to be cut up to be manageable) and Ming helped me. The dust that came out from beneath that ancient carpet was justification enough to get rid of it – wonderful!

And now I have contacted the heritage park people to come over for a final browse, I am going to advertise the gramophone and other items online (once I figure out how), and I’ve already boxed up historical material for the relative who is interested.

Every single photo/photo album in now in Anthony’s cupboard so I just have to do the scanning bit by bit by bit whilst being with him.

And my point in this ridiculously self-indulgent post?

I was stuck at the ‘unfinish line’ and now I’m not. Full steam ahead!

Very grateful for comments and am going to reply to them now. I don’t even ‘get’ why I had such a downer when my new neighbour/hairdresser, Camille, made my hair a wildish red, I met my beautiful mama for lunch on Friday and laughed my head off, met with my best friend Tony yesterday for lunch and Ming bought me Dylan Moran tickets for my Mother’s day present – so many great things.

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Oh and Dina is coming for dinner in a couple of weeks (well, she is coming to cook risotto in her thermomix) so I better get finished with these remnants asap.

My conversation with Ming a few seconds ago:

Me: I’m over my blah finally, Ming.

Ming: How’d you do that?

Me: Got a few things done I guess.

Ming: Jobs, jobs, jobs!

Me: Well we had a lovely time at the dump today didn’t we? [At the dump Ming had yelled out, ‘Mum, this is glorious! We’re not fighting! What a beautiful dump run!’]

Ming: It’s probably due to Sontime.

Mmmm – that is definitely an unfinished conversation!

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I miss Anthony so much ….

I have had a really horrible week – restless, agitated, depressed, apathetic, confused, overwhelmed etc. Partly this is to do with beginning (again!) to read Eckart Tolle’s book, The Power of Now, and subsequently failing in my attempts to stop thinking which is much more difficult than it sounds. It is also due to Ming’s near accident the other day and my psychosomatic reaction. I miss Anthony so much. I do understand that a racing mind can be detrimental to overall health, especially mental health, but the more I try to stop my mind racing, the more it races – argh! I miss Anthony so much. Also, after many months with being/feeling okay about Anthony being so debilitated, and spending many hours of most days with him in his nursing home room, I have suddenly been struck with a new sensation – loneliness. I miss Anthony so much. I’ve never felt lonely before: I love being alone, and I have so many friends, so the reason for this new lonely sensation only hit me today, and it hit me in a storm of hail-stone memories. I miss Anthony so much. Perhaps, Tolle is right in that every single moment I spend with Anthony in the nursing home becomes the new now and, yes, those moments are wonderful. But I miss Anthony so much.

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A note to blog friends

Sorry for not keeping up with your posts – I have been a bit busy offline – all is well.

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The party

Last Saturday I invited a wonderful friend, Mike, who has done the painting in this house over many decades, for drinks at the nursing home at 3pm and my lovely friend, Mel, and her daughter, Emily, also joined us.

Of course it wasn’t the sort of party we might have had years ago when Anthony’s mother was alive, where the drinks were over flowing and the nibbles plentiful: champagne, pink gins, cinzano, cocktail sausages, oysters, assorted cheeses, pate, and other savouries. Neither was it the sort of party we had in Anthony’s pre-marriage-to-me bachelor days: lots of beer, roast chicken, steak on the barbecue, and, seasonally, crayfish.

It was a much simpler affair with just the five of us and the unexpected addition of a nephew from Perth, but this small number of people easily fills Anthony’s nursing home room and seems like a crowd. Also, despite the fact that none of us could drink much (or anything at all) due to having to drive home, and my bowl of almonds wasn’t popular, the open bottle of red wine, the wine glasses that I had ready, and a few bottles of warm beer, simulated a real party-of-old. We were all quite lively and attentive to Anthony and, thinking about it now, it wouldn’t have worked with any more people because it would have been too overwhelming for him.

After everyone left and Ants and I were talking about how lovely the occasion had been, I felt I’d hit on a great idea for the future. I could invite a handful of his many friends for the same kind of party every now and then; I might even be able to get a few of his friends and relatives that are a bit nervous of the nursing home to come along. Yes! I need to take the initiative here and do a bit of old-fashioned planning and inviting.

The next day, Mike emailed me this message:

Hey Julie, just a thank you for yesterday at the nursing home with Anthony.
I was happy to see Ants in a great frame of mind he is looking so well as to when I last saw him. I was laughing to myself all the way home with his comments to me when i told him that he waited until he was 55 then got married at 57, and he replied ” you’re an arsehole” he definitely hasn’t lost his sense of humour. I thought he was extremely bright also yesterday.

I’m thinking that the nursing home has done him the world of difference in knowing that he is being looked after so well in his stage of life with old age and all that goes with it.

Sadly yes he would still like to be home with his Julie and Ming on the farm but that is not possible now. We all realize that he is in the best possible care .

Family and friends can still get to visit him there for however long they have time to spend with him so long as it doesn’t tire him out, I noticed yesterday that he does tire out.

I will come see him again soon to stir him up or he to me.

It was good to see you again you are looking bright again since I last saw you on the farm the afternoon you brought Anthony out for afternoon visit.

Today, it was very easy to conjure Anthony’s newfound smile by reminding him of the party. This was our conversation:

Me: Wasn’t it great to see Mike again!
Ants: The food wasn’t good.
Me: Okay, so what do you want next time?
Ants: Hors d’oeuvres, you know, the ones ….
Me: That your mum used to make – yes I get that!
Ants: Is she all right?
Me: Who, Mel?
Ants: No, Mum.
Me: She’s fine, Ants.

Thanks so much, Mike, Mel, Em, and nephew Michael for being part of last Saturdays party!

24 Comments »

Cold, hot, not sure

I had a leisurely afternoon with Anthony, watching two episodes of Borgen (the Danish political television series), which he enjoys me enjoying. He was cold as usual, so I did what has become a bit of a winter ritual now: rug on knees, foot rub, heat bag on hands, eyebrow grooming (another story!) Oh yes and I put the heater on.

Being cold has become a constant theme in our conversations:

Me: Are you warm enough?
Ants: No!
Me: Do you want a blanket on your knees?
Ants: Good idea. But can you light the fire?
Me: Good idea.

I reach up to turn the air conditioner on and heat gradually fills the room but it’s invisible heat; he wants to see the fire burning – real logs, real sparks, a real fireplace, our living room, his worn armchair. He doesn’t realise that I am missing all of this too. Ming and I haven’t lit a fire in the living room fire-place since Ants moved into the nursing home.

Halfway through a particularly interesting scene in Borgen, Anthony rummages around inside his knee rug and finds a hand which he gives to me as proof that he is freezing. Bloody hell – he IS freezing!

So I take this 2-kilo heat pack, that a lovely friend gave us ages ago, and heat it up in the microwave of the adjacent kitchen and bring it back.

As soon as Anthony sees my irritated face, he begins to smile. I thrust the heat bag into his lap and put his hands underneath it.

Ants: This is too heavy.
Me: Don’t be such a wimp!
Ants: Jules, please.
Me: Argh – okay, here is the heat bag and here are your hands on top of it! Can we get back to the show?
Ants: Could you just put the cold onto the icebox heater?
Me: What?
Ants: There’s a blister on the floor, a cow.
Me: You’re hallucinating, Ants, you know that don’t you?
Ants: Only if you’re here.
Me: I love you.
Ants: (watching the news channel on TV)
Me: I said ‘I love you’ – aren’t you going to say it back?

I am about to leave, but I rush back into his room and frighten the hell out of him by pretending to leap onto his lap the way Ming did when he was little.

Ants: I love you!
Me: Are you warm enough?
Ants: Yes!

I get home and contemplate lighting a fire in the fireplace but, instead, put a jumper on.

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Jigsawing Parkinsonisms

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.

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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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Born with a silver spoon ….

Today is my first niece Ashtyn’s birthday and in around five weeks she will give birth to her and Gordon’s first child. So on the weekend there were numerous celebrations – a mother blessing ceremony, a baby shower, and a birthday party.

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Ashtyn is gifted with the ability to be the star at every family gathering without even trying. Her birthday invitation read “The Most Important Day of the Year!” And her favourite present (given by her sister) was a selfie stick which was put to much use that day.

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At the baby shower, my mother, “Grandma” now to eleven grandchildren and one great-grandchild, gave Ashtyn two pictures that she had hand-embroidered over the last few weeks, then had framed. She’d told Ashtyn that if the baby were a boy, she would have the angel picture back for another occasion, and if the baby were a girl, she would have the train picture back for the same reason. Ashtyn’s response: “No way! I’m keeping them both.”

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I haven’t included the numerous pictures taken of the rest of us because, well, I didn’t want to detract attention from Ashtyn haha!

Anyway, in all the decluttering of this household, I had already found several silver teaspoons and I remembered that Ming had been given one at his christening. So I sorted through the good ones, found a matching spoon and fork, polished them up and then found a suitable box.

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I was so excited about this gift for Gordon and Ash’s baby that I did a bit of research into the whole silver-spoon-in-the-mouth tradition and was delighted to find that using silver cutlery is a lot more healthy and hygienic than other materials. Who knew!

Ashtyn is an absolute joy of a person to be around; she is totally, unselfconsciously, gregariously, generously beautiful. I am so proud to be her auntie and can’t wait for all of the mother-and-baby selfies!

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Thank you, Jill

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….

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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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