jmgoyder

wings and things

A new adventure

The other morning I entered a new realm; I went along to a local community gardening group get-together. Even though I knew some faces, there were only three people I actually knew (the ones who invited me). It was such a comfortable and lovely group and nobody that I spoke to seemed to mind that I didn’t have a clue about gardening.

I hesitated to admit to anyone that I have never actually liked gardening; instead I said that I was interested in learning (which is true!) And when one person told me that established roses were almost impossible to kill, I had to admit that that I only had a couple left.

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In fact, there are only two rose trees left on the driveway and, yes, I do feel a bit guilty about this. However, my decision to stop watering plants a couple of years ago, long after Anthony went into the nursing home, was based on economics. Every time a tap/hose is turned on, the bore is activated and the electricity bill soars.

Nevertheless, because of Anthony’s gardening prowess decades ago, we have the most beautiful garden!

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The challenge now will be for me to learn how to grow vegetables and it is so great to have a local group of people from whom I can derive tips!

My lack of gardening prowess is embarrassing and my close friends laughed without inhibition at the fact that I was joining the gardening group.

Watch this space!

PS. To blogger friends: I haven’t been very well lately so haven’t kept up with posts.

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The beautiful people

I remember, a couple of years ago, when it was all new and frightening, dropping into the nursing home to see Anthony one day and ….

…. there were all of these staff at the desk, probably having handover, and, despite my fear and grief, their smiles to me gave me the confidence to shout out “Ah, it’s the beautiful people!”

That was probably the first mutual laugh and I think, since then, the connection between staff, Ants and me has been a lovely thing. I have worried from time to time that my constant presence in the afternoons might interrupt the routine, and it probably does, but the staff are all so fond of us now (yay!) that, hopefully, I’m not in the way too much.

It is an enormous comfort to me that various staff members will come into Anthony’s room and visit him/us just because they want to and because they like him.

These are the most beautiful people in the whole wide world!

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Sunday afternoon at the nursing home ….

Last Sunday I began a ritual that I continued today, and will keep doing every Sunday now that I know it ‘works’. I will bring a bottle of really lovely wine in and Anthony and I will partake in sipping thimble-sized servings in massive glasses.

As I have to drive 15 kms home and Anthony can no longer drink a whole bottle of brandy in one sitting anymore (I’m kidding) neither of us can drink very much of course!

Nevertheless the reality of opening the wine and pouring it into glasses brought from home, toasting each other, exchanging memories of parties from long ago … all of this makes Sunday afternoons fantastic.

At one point, this afternoon ….

Me: Why are you looking at me like that?

Anthony: You look particularly beautiful today.

Me: What did you say?

Anthony: Your hair is brushed.

Me: ARGHHHH! What do you think of the wine?

Anthony: Not bad.

Me: Why can’t you ever say ‘it’s wonderful!’ instead of ‘not bad’!

Anthony: It’s wonderful.

Me: Okay, let’s clink glasses for a toast – to you and me, Ants. I love you and you love me and that’s the main thing.

Anthony: Can you just get the animals off the table first?

Me: It’s not a table; it’s your bed and you’re hallucinating!

Anthony: You always say that!

Me: It’s part of your Parkinson’s disease – please don’t worry about it. When you see all of those dogs and cats and calves in the room, try to remember that they are not really there and that you are hallucinating.

Anthony: So how about this baby?

Me: What baby?

Anthony: This one [pointing to his lap].

Me: Okay, Ants, is it Ming?

Anthony: No. Ming isn’t a baby any more.

Me: So who is the baby?

Anthony: I don’t know.

I am astounded that, ever since our niece gave birth to her first baby several weeks ago, Anthony keeps ‘seeing’ babies on his lap. It is so so so weird! But it’s also rather magical and wonderful that somehow Anthony’s PD brain has registered this new addition to the family.

Sunday afternoon at the nursing home; a delightful experience!

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Goodbye to a special person

This post is to say goodbye and thank you to A, a wonderful carer at the nursing home. His last day is Sunday and I am trying to think of a gift to give him. He had such a wonderful rapport with residents, including Anthony of course who he called ‘Tones’. I/we will miss him so much.

It is so hard when people, who Anthony and I have gotten to know so well, disappear, move away, get different jobs, go to greener pastures etc.

A was a particularly special person with a fantastic sense of humour and he shocked me once by saying I was the exact same age as his mother!

When I was working in the dementia cottage, A would come to do the medications and several of the women would be enthralled by his presence.

Anyway, A, I wish you and yours a huge amount of luck and love and thank you, from the bottom to top of my heart, for your kindness to Anthony and me.

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‘Thunking’

IMG_4655Thinking versus thunking (I like thunking!)

3.10am: There is something quite exciting about hopping out of bed at 3am, wide awake, dashing to my writing room and switching on the computer and, aha, engaging with various friends. It seems somehow illicit to be up and about, drinking coffee while the sky is still black night, listening to absolute silence, reading thousands of words, smiling at photos on my screen ….

4.03am: Me chuckling that it is now just after 4am and nobody is going to tell me to go to bed.

4.38am: Ming’s favourite phrase is “Do what you want to do!” This type of 21-year-old wisdom sustains and motivates me whenever I am stuck. I feel grateful for this wonderful son of ours who, having recovered from two spinal surgeries, his father’s transition from home to nursing home, the car accident that injured so many and was his fault ….

For all of the above reasons I prefer to thunk rather than think because too much thinking can do your head in whereas thunking allows you to step aside. It might be just a tiny step (an ‘i’ to a ‘u’) but it makes a hell of a difference!

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Nonsense!

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Not long after one of Anthony’s nephews had visited us the other day (at the nursing home), during which we all shared a lucid conversation, Ants suddenly said ….

Anthony: I need a dressmaker.

Me: WHAT?

Anthony: A dressmaker. I want to make a dress.

Me: But I don’t wear dresses! I’d rather eat a raw egg than wear a dress! I HATE dresses!

Anthony: Not for you.

Me: So who do you want to make a dress for?

Anthony: For Stuart [this is not the real name of the nephew].

Me: Why the hell would Stuart want a dress?

Anthony: I just want to make him one.

Me: Anthony, are you kidding around or are you really crazy?

Anthony: Just find me a dressmaker, Jules.

Me: Okay, if you say so.

By then I could no longer contain my laughter at the image of Stuart in a dress that Anthony had somehow made for him. I hugged Anthony tight, guffawing, then told him I still loved him even though he was stark, raving mad – and he gave me one of his wonderful smiles.

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This is, by far, the most bizarre conversation I have ever had with Anthony because I couldn’t find a reference point for it. I am wondering today if it could be the outfits worn by the cast of The Good Wife (a series we are watching), but that still wouldn’t explain why Anthony would want to make a dress for his nephew!

One of the things I have decided to stop doing, though, is to try to make sense of nonsense. And I am not being disparaging of Anthony when I say that he often talks nonsense because this is a fact.

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Okay so I tease him a bit when he talks nonsense but that’s all part of the fun really. In fact, I actually find our nonsense conversations absolutely fascinating and much more pleasant than these …..

Anthony: When are you taking me home?

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Me: I can’t. You’re too heavy. Stop asking me to do the impossible.

Anthony: I’m sorry I’m such a disaster.

Me: You’re not a disaster. You have Parkinson’s disease.

Now those no-nonsense conversations are the ones that are heartbreaking.

I prefer nonsense!

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Note: I took a whole lot of photos yesterday to show Anthony today in the hope that he will feel as if he has been home.

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Predicting unpredictability

I think one of the most difficult things for carers/families/friends of people with Parkinson’s disease, Alzheimer’s disease, or any disease that involves dementia, is the unpredictability of every single day.

Two days ago I sat with Anthony all afternoon and he slumbered the whole time away even when I punched him in the shoulder a couple of times to make sure he was alive. Instead of waking up, he just kept chuckling in his sleep – over and over again! So I just sat there next to him with my arm around his shoulder and watched TV and ate my lunch. A few hours later I informed the nurse-in-charge that he was a bit sleepy and that I was a bit worried he might have had another TIA (mini-stroke).

Me: I’m going to leave my scarf on the chair next to his, so he gets the impression I will be back soon. Is this okay with you?

Nurse-in-charge: Of course!

Later that evening, I rang the nursing home to see if Ants had woken up and the nurse-in-charge reassured me he was fine and that she’d showed him my scarf (an indicator that I would be back).

Me: You are okay with me not coming back?

Nurse-in-charge: Of course!

Okay so I have blogged about this before – this kind deception thing whereby I leave Ants to come home but always say I will be back soon. The reason I do this is because it is kinder than saying I am coming home without him.

This tactic has worked for many months. I turn up the next day at the nursing home and Ants doesn’t seem to recollect that I didn’t return the previous evening.

But today was different! I did my usual:

Me: Just going to get some groceries, Ants – I’ll be back later.

He looked at me with an expression of such lucidity that I was taken aback.

Anthony: You didn’t come back last night, Jules.

This is so weird! Today he remembers yesterday’s promise of tomorrow, but has forgotten so many of yesterday’s tomorrows that every single today is confusing even for me!

Bottom line in this kind of situation is to simply go with the flow I guess?

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Nursing home friendships

One of the most beautiful things about being with Anthony in the afternoons – in his nursing home room – is the easy friendships with various staff.

These various staff have various roles, of course: domestic duties, carer duties, medication duties, managerial duties, catering/cooking duties, OT duties, volunteer duties, supervisory/teaching duties, orientation duties, and many, many more. When any staff member (regardless of role) drops in – I always either ‘pause’ or ‘mute’ the TV. This creates a little bit of silence, just enough to enable an interaction that will make Anthony smile. This is because he was always gregarious, and loud, and the life of the party, and nobody will ever know this unless I tell them. Many of the staff now understand how a bit of banter with Anthony can rekindle a semblance of the BIG personality out of the tinyness of who he is now (quiet and thin). They haven’t just discovered this via me, they have also discovered it via him.

There are certain staff that can, in a few seconds, rustle him out his silence, conjure the smile, make him feel valued, but of course they are always rushed, doing their own jobs and not wanting to appear to be wasting time. Recently, due to the rush of work, two of the carers opted to come and visit Anthony on their days off so they could spend more time with him – I was astounded by their generosity, and so grateful!

But, even during work hours, those quick visits are invaluable and, whenever I am there too, staff will often drop in and have a chat with us. I think this is wonderful! Whenever any of the staff drop in to simply say hello to Anthony and me – to chat, gossip, joke, hug – I can come home with the knowledge that he is well cared for and, more importantly in a way, cared about.

Here’s an idea: what if every single staff member were allocated half an hour per day to spend a bit more time with a resident? This could be used in five-minute increments so that staff could linger a bit in various residents’ rooms just for a chat, instead of having to rush off to their various duties. One of the chefs at the nursing home dropped in to Anthony’s room the other day to admire the artificial roses that she thought were real.

Me: Haven’t you noticed these before?
Chef: Yes, but I never have time! They look so real!

We had a hurried conversation and she zipped off back to the kitchen. I wanted to give her a massive hug but I restrained myself as I seem to have become overly-huggy lately. A bit later in the afternoon:

Anthony: Your roses are a hit.
Me: Yes! Anthony: But I planted them. Give that lady a cutting. Me: Yes.

I wish that I could name the various staff who have become friends of ours, those people who, in the line of duty, don’t mind detouring in order to offer kindness and friendship. But I respect their privacy so all I can do here is to say thank you to them, every single one of them, because they will know who they are.

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Happenstance and happiness

The pursuit of happiness seems to have become a key topic lately, in blogs, documentaries, research articles, therapy groups, Facebook shares etc. ‘Happiness’ has made yet another come-back because the idea of having happiness is irresistible (and it always has been).

But you can’t just have happiness; it isn’t a commodity that can be bought and sold with money; it can’t be negotiated via generosity, gratitude, genetics; and you cannot conjure a state of being that asks you to dismiss/forget/deny your unhappiness.

There is nothing wrong with being unhappy but it seems to me that the happiness culture has made it a bit embarrassing to be unhappy. This makes it difficult for people to grieve, to mourn, to flounder, to sink – because we are supposed to be braver, stronger, useful, happy.

The notion of happenstance appeals to me much more than the notion of happiness. Happenstance is real, immediate; happiness is an elusive, heavy obligation and I know for sure that, if I pursue it, it just floats away.

So I no longer pursue happiness; instead I just figure out how to create it within the various happenstances of everyday life.

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Paro: the robotic ‘pet’

It’s around a year since I became aware that staff at Anthony’s nursing home were raising money to buy an electronic pet to be shared amongst people with dementia. ‘Paro’, a fluffy, white seal pretend-pet, once its battery is charged, is extraordinarily real, warm and responsive, with blinking eyes and little sighs.

Here is a link to a bit of information about Paro: http://www.theguardian.com/society/2014/jul/08/paro-robot-seal-dementia-patients-nhs-japan

Anyway, a single Paro cost thousands of dollars, so it has taken a lot of incredibly determined fund-raising efforts from staff, donations from relatives, friends, and the board of management, to purchase the first of two Paros for this particular nursing home.

Okay, to begin with I was rather cynical and a bit mystified as to how this robotic ‘pet’ could help, and the expense seemed over the top! But today I visited the dementia cottage and B was in her room cuddling Paro. I asked B if I could see what Paro looked like and she said yes. So I just touched the furry little bundle nestled into B’s collarbone and Paro did a little squeal of joy and its eyes looked at me. I wasn’t prepared for this so I did a little squeal of shock and B laughed then cuddled the real warmth of Paro against her chest before dismissing me.

One of the staff told me today that when one of the women in the dementia cottage was in tears, Paro was given to her and she immediately calmed down.

Like doll therapy, Paro, the robotic seal, is probably a controversial dementia-care tool/issue, and it/he/she is certainly incredibly expensive. Also, for those who are unfamiliar with all of the different categories of dementia, the presence of a Paro might seems utterly weird.

But, for those of us who don’t have dementia, and who worry about the dignity and comfort of our loved ones who do have dementia, just suspend your disbelief for a moment.

It is – this Paro – a beautiful invention.

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