jmgoyder

wings and things

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.

20 Comments »

Attraction

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.

19 Comments »

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.

img_2950

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

51 Comments »

The loss of Gutsy 9, our pet peahen

The evening before last, Ming found Gutsy 9’s body just in front of his shed. He came over to the house to tell me that he wasn’t quite sure that it was Gutsy but he’d taken the body to the woodpile. He had two friends over to stay, so he said they would leave me alone and they retired to his shed.

Once the boys had gone, I did the crying thing, then I took a torch and went out to the woodpile, but I couldn’t find her, so I came back inside and cried some more. I felt bewildered, because, despite the danger of wild foxes, the peafowl have always ranged free because they can fly up and away. Our dogs, too, had become so used to their presence that they would drink from the same water trough.

I will never know what happened that evening, or how it happened, but at dawn yesterday I went over to the woodpile and there she was – her crooked left foot and her white feathers making it easy to identify her body. I picked her up, but couldn’t find where she had been wounded; her eyes were closed and her neck flopped against mine in a last hug.

As a pied peachick (half white, half blue) G9 was rejected by her mother nearly three years ago, so I raised her, and we all loved her. Just the other day, we had some visitors and I picked her up and put her on my lap and she purred her unique hello.

img_1841-1
img_1732

pea-756
img_3808

I feel absolutely devastated, but am now beginning to appreciate G9’s fantastic presence in our lives … in retrospect – my beautiful bird.

img_2896

53 Comments »

Autumn

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!) IMG_4307 IMG_4505 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.

57 Comments »

Unfinished conversations

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!

 

39 Comments »

Going, going … gone!

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:

Untitled    Untitled 2

Untitled 3      Untitled 4

Shed 2:

Untitled Untitled 2

Untitled 3   Untitled 4

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':

IMG_4454

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.

IMG_1451_2

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?

37 Comments »

Treasure hunting!

Just behind the flowering tree is one of two sheds that is was full of rusty tools, abandoned bookcases, paperwork covered in fly-poop/rat-poop, the occasional photo, bits and pieces of a long time ago – well before my time here on this farm and probably remnants of before Anthony’s time here too.

IMG_4357

IMG_4445

The two falling-down sheds contained objects from a long-ago era; one also contained asbestos. Then there is the little house we call ‘Arthur’s hut’ because he was Anthony’s dairy hand for decades and was the last to live there.

IMG_4458

Today, Dina and her assistant donned protective masks and suits in order to clear all of the bits and pieces from the two sheds, and the hut, so that I could categorise them.

IMG_4442

The three of us worked almost nonstop for six hours and we did it! We cleared all three buildings and I am astounded because I thought it would take days! I am sitting here now, filthy and exhausted and sneezing from all the ancient dust, feeling absolutely euphoric.

We took three enormous ute-loads of rubbish to the dump, once I had decided what was trash. ‘The Ming’ was conveniently at work and, as he rarely reads my blog, he will not need to know about those three ute-loads because we have left enough of the keepable clutter outside for him to check out.

IMG_4461

IMG_4438

Now all I have to do is to sort through a few suitcases full of miscellaneous papers, books and photos (from well before I was born – Anthony first came here with his mother and younger brother when he was 23); sort the scrap metal from the collectible metal; and decide what to do with memorabilia that family members might want.

IMG_4451

IMG_4464

IMG_4448

The above photo is of the first shed we cleared. It was a very difficult job as the floor is collapsing as a result of rabbit warrens.

IMG_4447

History is a weird thing: it can hurt you, or heal you, or humour you. I plan to take a box-full of the more interesting relics into the nursing home to show Anthony next week.

IMG_4466

The garage sale has now been postponed until I do the remainder of sorting, but I am nearly ready to advertise it – hurray!

Many thanks again to Dina and to her wonderful assistant for the miracle of today!

40 Comments »

Dementia dialogues 2

My last post raises the question “but how can you listen to someone with dementia who is either incoherent or totally silent?”

There are two particularly talkative women in the dementia house where I work. One of them fluctuates between English and her first language but, regardless of what language she is speaking, her monologues are extremely difficult to understand.

The other woman, who is bedridden now, is so talkative that it is difficult to give her food or drinks because her monologue can be unceasing, but, interestingly, when she loses the thread of what she is saying, she hums a tune. Here is an example:

“And I said to him, said to him, you go go go to the shop and … humming … And there is, is, is a … humming … (takes a mouthful of food) … Oh that’s good, and he said to me that it’s, it’s, it’s a one, two, two, two … humming … What on earth are you do-doing? It’s a very nice dress … humming … chuckling … Oh no, damn … chuckling (takes a mouthful of food) … You shouldn’t, shouldn’t do that … humming … How dare you! I’ll have to, have to do, do, do that … chuckling ….” And on and on this goes.

In my ‘shut up and listen’ mode there are all sorts of nonverbal ways of validating that what these two women are saying is important. I can nod, smile, laugh, hug, hold hands, shake my head and I can pretend to understand. And the ‘shut up and listen’ mode doesn’t mean you can’t say anything at all of course; it just means that you give the person with dementia the floor so to speak. I’ve found recently that one-word responses on my part are much more effective than attempts at coherent conversations. Exclamatory words seem to be particularly successful in eliciting smiles, laughter, pleasure. “Yes!” and “What?” and “Really?” and “Amazing!” and “Thankyou!” and “Please!” – accompanied always with suitable facial expressions – can be a gift to those with dementia who are talkative.

But what about those people for whom speech has become difficult (e.g. Anthony) or even non-existent? This is very difficult because, unless you are psychic, you cannot possibly know what that person might have said/wants to say/feels like saying but can’t. How do you listen to utter silence?

To be continued when I figure that last question out!

45 Comments »

Dementia dialogues

When I first entered the world of blogging, “Dementia Dialogues” was my chosen title. I wrote a few posts but nobody read them and now I can’t even find the site (I thought that once something was on the internet it was there forever!)

Anyway I’m rather glad that those first few clumsy attempts at blogging are now in the trash because I feel a bit stupid now for even trying to write about these kinds of conversations. I also feel presumptuous in thinking that I had some sort of secret solution to the dilemmas faced by carers of people with dementia because there is no one-size-fits-all. Every single person with dementia is an inviolable individual with a history, attitude, idiosyncrasy, personality, humour, passion, memory, skill, dream, ability that is theirs and theirs alone.

In my new job in the dementia wing of the nursing home where Ants resides (he is in the high-care section), there are ten amazing women who are utterly different from each other but, due to their dementia, are also the same.

Getting to know each of these women as individuals has been a learning curve for me. Of course I have travelled this curve before as a young nurse working in nursing homes many years ago. And now, of course, I am dealing with Anthony’s Parkinsons’ disease dementia.

We all have conversations with each other where we forget to end our stories, leave loose ends, lose the plot of the point, pause, interrupt, argue, joke, and forget what was said. Sometimes we worry about our manners, our bad hair days, our inability to bring perspective to a situation, our dirty shirts, our sneezing fits, our unswept kitchens, and our fear of dementia.

For me, a ‘dementia dialogue’ is a conversation between a person with dementia and someone without dementia and I think it is very important for the latter to just shut up and listen.

I am so lucky to have a job where I can actually do this!

(To be continued….)

40 Comments »

Follow

Get every new post delivered to your Inbox.

Join 1,611 other followers