jmgoyder

wings and things

These boots were made for walking ….

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I have just returned from a delightful couple of days in Perth with a wonderful friend. She flew down from up north and I drove up from down south and we stayed at a beautiful resort, shared some fine wine, extraordinary pizzas, watched a very complicated movie twice (because we didn’t ‘get it’ the first time), and enjoyed chef-styled breakfasts each morning.

It was brilliant! We each had various big-city things we had to do so yesterday we went our different ways for a few hours and I visited my friend, Rose, at Dimario http://dimario.com.au

Dimario is a shop that is close to my heart for many reasons (for example, I love boots). But the main reason is that several years ago, when Anthony wasn’t so ill, we walked in and I fell in love with a pair of boots that were extremely expensive and extremely beautiful. Ants and I had to go back to our hotel room to mull it over and, despite being a rather scroogy careful-with-money person back then, he wanted me to have those boots.

From then on, whenever we went to Perth (which was only once a year), Anthony would actually suggest going to Dimario. Rose and Nikki would welcome us like old friends and Ants would watch as I tried the various boots on, usually convincing me to get the better, more elegant and expensive ones.

Then, one year, it became too hard for him to get out of the car; another year, it became too difficult for me to take him from the hotel to the shop, so I went by myself; another year, he was in a hospital in Perth having his Parkinson’s Disease medications reassessed; another year Ming came with me and cloned Anthony in picking out the best pair of boots; another year we didn’t go to Perth at all as Anthony’s health had deteriorated too much. I guess that was around four years ago and my memory of this phase in our lives blurs a bit around the edges.

To see Rose again yesterday, despite the fact that it’s probably been a couple of years now since I visited her gorgeous shop, was incredible. I was greeted with a hug!

Rose: And how is your beautiful husband?

Me: He’s in a nursing home now but he still remembers you and I need to buy some boots so I can wear them to the nursing home and remind him again.

Rose: I will always look after you; what about these?

Me: Not me – I rather like those….

Rose: And how is your beautiful son?

Me: Still beautiful. What about those embroidered boots?

Rose: They’re on sale – let me see if we have your size.

Rose then told me that Nikki had retired but had a pair of the same boots and I asked her to give Nikki our love. She said she would, then, when the boots were a perfect fit, Rose discounted them even further, I bought them and we had another hug as I left.

After that, I picked my friend up and we went back to the resort. We shared a mutual admiration of our purchases then began (again!) to watch the stupid movie and order pizza.

Today, I dropped my friend at the airport and headed home. We are going to meet like this every few months; it’s a wonderful arrangement and, even though she and I have lost touch on and off over the decades, we are still the same buddies we were as teenagers.

And I can’t wait to show Anthony my new boots tomorrow!

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Grief

Tonight I am in a state of such grief about Anthony that it is as if my eyes are inventing tears over and over again. I know he is cared for, and popular with staff, and I know he has gotten over his terrible fear of the hoist but of course I still worry.

Mostly I can manage the grief, but sometimes I just have to succumb to it by crying and crying and crying until I, once again, reach a point of acceptance, and the anticipation of tomorrow when I will see Anthony again.

Ming and I talked about it tonight – this grief thing – but we were unable to come to an agreement about how to cope. We both love Anthony so much; we both feel guilty to have placed him in the nursing home; but we are also happy that neither of us has the burden of care anymore.

We can just love Anthony now and that’s what I said to Ming tonight. But the grief is potent and present and debilitating.

I just hope that Anthony knows how much I love him, even when he forgets who I am.

Grief has gutted me lately, but it’s not going to win!

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Anthony’s room

Every day I look forward to going in to the nursing home to be with Anthony. His room has now become home to me; Ming throws his big self onto the bed, my mother knits, friends and relatives visit us here, and staff are welcoming with cups of tea and jokes. I love being in this room.

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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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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!

 

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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….)

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Lost and found 1

One of the most wonderful things about the last few weeks of decluttering the house has been finding things I thought were lost.

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Dina, Ming and I have found a multitude of keys but the one pictured is rather important as it is the front door key. This is going to make getting into the house so much easier than climbing through the front window, which I actually had to do yesterday because Ming had taken the found key. As for the back door key, I am sure it is somewhere in the bowl of keys.

I have been telling Anthony a heavily edited version of this extraordinary decluttering experience by describing Dina as ‘the lovely woman helping me to spring clean the house for you.’ This works well because (a) despite being a bit of a wardrobe-hoarder, Anthony was, once-upon-a-time, an extremely organised person. He did all of the paperwork, milked the cows, looked after his mother, fondly known as ‘Gar’, and had various cleaning women in to help with polishing the silver and brass, wash the windows and, basically keep this beautiful old house in order.

Fast forward to now: As Dina and I opened the blanket chest in the spare room this week and I saw the amount of papers in there, I felt totally overwhelmed, caught between curiosity and cull mentalities. Without Dina’s help and presence, I would not have been able to cope but with her help, I was able to choose what to keep and what to throw away and, halfway through this process, I realised that these were Gar’s hoardings, not Anthony’s.

When I found a note, in Gar’s handwriting, to pay Juli (me) $60 from way back when I first came to work for her in the ’70s, I felt a bit of an emotional tug to either cry or laugh, so I laughed. Dina – always sensitive to how I might be feeling – gave me the pauses I needed to read out words written from one person to another on paper so fragmented that it sometimes fell apart in my hands.

Needless to say, much of this historical and sentimental paperwork has been put in a posterity box, including the love letter from Gar’s husband, Barr, which I thought I’d lost. More to say about these things at a later date. I still haven’t found a mass of gold (haha) but you never know!

Apart from all of this, it has been an extremely busy week in many ways so I have not kept up with other people’s blogs – sorry!

Oh yes and, now that the elusive parrots have returned, but absolutely refuse my offer of a photo shoot, I can tell you honestly that they are red-capped parrots. They are very shy of humans so I have decided to put a photo of the baby avocados instead (which the redcaps will probably eat anyway.)

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It was a joy this week to catch up with a beautiful friend who I have know since school days, but with whom I had lost touch in a meaningful/nitty-gritty way. To find that we are still the friends we were, to share stories, wine and pizza, to exchange tears and laughter, to have reconnected like this – is a gift.

Lost and found; I salute you, N.xxxxx

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Taboo topics

I am always very careful not to write details of our story on this blog that might embarrass Anthony. The taboo topics are to do with matters of the groin area: sexuality, ablutions, incontinence, libido, that kind of thing. These topics are not taboo for Anthony and me of course and actually provide us with some rollicking conversations in a slapstick comedy sort of way and some of his male friends who visit love to tease him about his past exploits (not me, I can assure you ha!)

One of the things that most amazes me when I watch various television shows/series is that no matter how long a particular character is trapped, or imprisoned etc. he/she never seems to need to go to the toilet (I think Nicole Kidman was one of the first do so in her last movie with Tom Cruise – not sure).

Anthony is utterly unembarrassed by incontinence and made me laugh my head off the other day when he said, “I hate having a wet nappy!” when I tried and failed to get him to the toilet in time at the nursing home. Unabashed, he said, “Those kids will help me soon” (he calls all of the staff ‘kids’ for some reason.

But even writing the above paragraph makes me worry that (a) this would embarrass him; and (b) that relatives and friends who read this blog might think this is ‘too much information’. However, whenever I present my worries to Ants and/or read bits of the blog to him, about him, including the above, he reassures me with his half smile. He has a very healthy ego! Libido is of course another taboo topic but the hilarity with which Ants has approached this now diminished capacity (“This is a gold bar”) is, I think, an important part of a story of extraordinary resilience.

I remember thinking, years ago, that if this or that were to happen I would not be able to cope any longer. I was right; when this and that happened, the nursing home idea saved us – our marriage, friendship, love.

If I write the Anthony book, I want to be honest about these taboo topics; I want to demystify them, make them less scary, put it out there for those who are going through the same kind of thing.

Off to the toilet now!

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Everything (a poem)

When you are inside the blah balloon
floating above the world,
tossed about by moody winds

you can see everything, EVERYTHING
up, west, down, left, north, right, east, here, south, and, yes, there too!

And in between all of the circumferences, you have
a clear, detailed view
of the whole wide world, but

from the blah balloon, your view is distorted
by plastic
and motion sickness
and fear of falling.

So what do you do?
Do you stay inside your safe, up-in-the-air balloon
dizzy
disorientated
upset and shocked that in the whole wide world
you are absent?

Or do you scream triumphantly,
pierce the wall of the balloon with your un-rude finger,
fall to the ground with a THUMP

stand up,
walk,
smile

EVERYTHING

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I went to a funeral today

Martin was 90 and his room was two rooms away from Anthony’s. He died a few days ago and I went, with my mother and one of the carers, to the funeral service at the Catholic cathedral today. After the service I was able to give Ruth, Martin’s wife, and three of his daughters, a series of quick hugs before withdrawing from their private grief. Ruth and I have formed a friendship borne of mutual care and grief over the endless months of our husbands’ deterioration so, even though it sounds selfish, I am not sure how to go on without Ruth’s visits to Anthony’s room. Already, there is someone else in Martin’s room and, even though I had just been to his funeral, I caught myself just about to wave goodbye to him – as I have done every afternoon/evening on my way out. Martin’s ‘gone-ness’ has been so swift.

This morning, as I psyched myself up not to cry at the funeral, I checked my emails and discovered that my blog friend, Bill, had died from COPD. The shock of it was terrible. His friendship, humor and rapport had blessed me for over a year. Here is his last, heroic post: http://dealingwithcopd.wordpress.com/2014/08/29/how-i-feel-for-the-week-ending-08-29-14/

Then, hesitantly, I opened another email about another blog friend, Rhonda, and my heart did a somersault of dread as I read that she, too, had died. Jennifer’s post here honors Rhonda beautifully in a way that respects the horror of this tragedy. http://jenniferkellandperry.wordpress.com/ Jennifer’s post provides links to Rhonda’s blog.

My heart goes out to all of those who have been left grief-stricken by the death of their loved ones.

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