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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On-line/off-line dilemmas

With the blog I write here (we can just forget about other blogs I hoped to establish ha!) I really don’t quite know, or even remember, how it all began. Okay so it was my friend, Nathalie, who first suggested a blog so I began to write one and even included photos.

Fast-forward to now and I have learned a lot about the politics, joys and disappointments of blogging. WordPress is a blog-site I would recommend to everyone and I have had the most wonderful fun, made friends, and connected with people and groups who share their photos and stories beautifully.

But I just can’t keep up with reading, commenting, replying and so on; the blogdom for me has become a bit of a problem. I so admire people who CAN keep up and feel really guilty for not replying to comments etc. My gratitude to blog friends is difficult to describe; how people who are unknown to me have become known friends – extraordinary!

Anyway, I’ve decided to go off-line for a week or two just to remind myself what it feels like to be off-line. Oh yeah, and I’m beginning to ‘get’ Tolle’s NOW thing!

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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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The weird experience

The other day I met one of my brothers, BJ, for lunch at the restaurant where Ming works so Ming took his lunch break at the same time. The three of us talked, ate, and laughed together and then, just as Ming was about to go back to work, he told us that on his way into town that morning, he had lost control of his little car on a big roundabout and it had spun full circle on the newly wet roads (it is autumn here so we’ve had some rain).

Ming said that a truck, and its driver, slowed down and witnessed his near-accident but luckily there was no other traffic as it was very early in the morning. Okay so BJ and I digested this information as we finished our meals then we went our separate ways.

At the time, I didn’t quite process that Ming had nearly been in another car accident/caused another car accident/come out of a potential car accident alive/not injured anyone in a car accident that was his fault … and that everything was okay … until I got into my own car to go to the nursing home. I began to perspire….

It was a cool day but by the time I got to the nursing home I was quite hot. I went to sit with Anthony for awhile before going on duty and, as his room is always so hot, because he feels the cold so badly, I thought my perspiration was due to that.

An hour later I was on duty in the dementia cottage and absolutely drenched in perspiration – every single strand of my hair was wet and the carer I was working with probably assumed it was menopause.

Anyway, I did my shift, sweatily and with no conscious thought of Ming’s near accident, then went home, still so drenched in perspiration that I had to put the air-conditioner on in the car even though the weather was cold. Just before I knocked off, Ming texted me saying, “home safe” and I wondered why he would do that because I had completely forgotten about his near-accident experience!

When I got home, Ming came out to meet me as he does and had all of the outside + garage lights on. I got out of the car and this was our conversation:

Me: Ming, I have had one of those sweat attacks – hyperhidrosis or whatever. Look at me – I am drenched!

Ming: Me too, Mum – me too! I was shaking and nearly crying when I got to work and sweating all day.

Me: Is that why you texted me you were home safe?

Ming: Yes! I thought you’d be worried.

Me: To be honest, Ming, I forgot about it.

Ming: So why are we both sweating?

I am quite interested in the fact that my mind didn’t absorb yet another close call in terms of Ming’s safety and yet my body absorbed it like a leaking sponge!

Will the car accident that Ming caused ever leave us? It has strengthened some relationships, weakened other relationships and probably mystified all of us in the ways in which it has affected us, individually – the nephews who went to the scene of the accident, for example; the mother who was overseas when it happened; the guilt we probably all feel for somehow allowing it – I don’t know anymore.

What I do know is that I am grateful, every single day since the accident, for the fact that every single person assaulted by that accident is still alive, still able to flourish, still able to overcome the obstacle of that terrible memory, still able to be.

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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!

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Letting history go

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Inside this suitcase are the last remnants of bits of history that are not mine: war medals, marmalade recipes, long-ago title deeds, documents, shop bills etc. Initially, when Dina, her assistant and I cleared the sheds and the old cottage, this suitcase was only half full but now I have filled it with every single other document/old photo so that all of the historical stuff is now in one place!

For some reason (procrastination + a bit of depression) I have saved this last job of sorting through for tomorrow when Dina is meeting me at the nursing home. There is a family member who has been writing a history of this family so it is wonderful to be able to put papers and photos into ‘the Margaret box’.

Also, the antique guy + heritage people have taken away the historical stuff that they know more about than I will ever know. Hence, I have earned a few thousand dollars for bits and pieces that were interesting to see, but not to keep.

The decluttering of this house and farm, over the last few months, has been an extraordinary experience of joy and pain, with a dash of relief!

Letting history go….

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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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