jmgoyder

wings and things

‘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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14 Comments »

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?

17 Comments »

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.

33 Comments »

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.

50 Comments »

Routine to the rescue

I’m not crazy about the idea of routine and now that I am once again a lady of leisure unemployed, there is even less incentive to exit the world of spontaneity and knuckle down.

In my recent interview with the finding-another-job people, I stated that I only wanted part-time work because I liked to spend the afternoons with Anthony in the nursing home. I also stated that I would be happy to do something completely different from my previous jobs (lecturer, nurse etc.) So it’s with a degree of mild excitement that I am now looking at outside-the-box possibilities. We shall see!

In the meantime, I have settled into a routine of being with Anthony from just before noon until about 4pm. This way, I can help him with his lunch; make sure he is warm enough; get him comfortable in his electrical armchair; give him chocolate, bananas and beer (but not all at the same time); and just be there, very close, one hand on his head and the other hand inside both of his.

This arrangement is great and our mutual friends and relatives now visit us at the nursing home. I am free to make visitors coffee or tea (our friend, C, visited this afternoon and it actually did feel like we were all home at the farm). I also have plenty of long-lasting snacks in Anthony’s cupboard, you know, like nuts and stuff, plus red wine, brandy, scotch and warm beer. The ready availability of this kind of sustenance also helps to make Anthony’s room homey and, I hope, welcoming.

If I am meeting friends for lunch, I simply go to see Anthony a bit later in the afternoon and then stay later in order to help him with his dinner. So I think the fact that I am now always there in the afternoon has become something he can now rely on; it gives both of us a definite daily expectation. It also frees my whole morning up so I can do other things like the exhilarating tasks of housework, washing and cooking for a fussy son ha!

Sometimes I feel incredibly lazy and unproductive sitting on the side of Anthony’s armchair with him, watching Dr Phil or a television series, or Master Chef. But, thanks to either the ‘pause’ or ‘mute’ buttons, I can always stop whatever show is on and we can converse with each other and/or visitors, AND the wonderful staff who are so affectionate and friendly to both of us

Today, Anthony was quite vocal and ‘with-it’ until about 3pm when he thought his mother’s eye-glasses were on the floor (yes, the hallucinations are getting worse but not distressing yet, like they used to be at home).

Anthony: You are popular, Jules.
Me: What do you mean?
Anthony: Everyone always wants to know when you will be here.
Me: No, it is YOU who is popular, Ants! The staff here love you!
Anthony: I don’t think so – I think it’s you.
Me: Rubbish, Ants!
Anthony: I beg to differ.

But a couple of hours after this lucid conversation, as I was about to leave to come home:

Me: I’m off now to do the grocery shopping, Ants, okay?
Anthony: Is everything in the shed?
Me: Of course!
Anthony: What about the calves?
Me: They’re fine; Ming is taking care of it – don’t worry.
Anthony: Don’t be too long, Jules.
Me: I’ll be back as soon as I can.

And, after one last kiss, hug, joke, lie, I come back home to this beautiful farm and begin to accept that this new routine is working.

Anthony’s face is no longer as expressionless as it was six months ago….

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He is smiling again!

42 Comments »

Weird and wonderful

Anthony had visitors today when I arrived – his oldest friend, F, who often drops in with his wife, J. But today it was F with his eldest daughter, T.

He/we have had a lot of visitors lately and most people say, when I go outside to see them off and thank them, that Ants looks better.

The weird and wonderful thing about this is that he actually has started to look ‘better’, feel better, respond better, smile more readily, quip sarcastically, banter with me and with visitors.

I find this both fantastic but also bewilderingly fascinating because Parkinson’s disease doesn’t go backwards; that’s impossible? And yet, like the couple of nephews who visited on the weekend said, “He seems to be improving!”

Of course, in physiological terms, Anthony is not improving (i.e. although occasionally still able to walk with the use of a walker and the help of two carers, he is mostly immobile). But his cognitive wit, his innate positivity, and his unique grin, all seem to be returning.

My determination to spend most of every day with Ants, usually sitting on the arm of his armchair so I can put my arm around his shoulders, has certainly improved his mood. Not that he is ever in a bad mood anyway; he is one of the most even-tempered people I have ever known, but I now wonder if the regularity of my visits and the habitual things I do/say on arrival are making him happier. Another factor is that my own mother visits Anthony when and if I can’t get there and that, too, is a regular occurrence.

Currently, this is the pattern of our exchanges:

Me (entering his room at 11amish): DARLING!

Anthony (slow smile): It’s you.

Me: Move over so I can sit next to you – hurry up!

Anthony: You need to brush your hair (he always says this!)

Me: You always say that – shut up! Maybe I should get the haircut you’ve just had?

Anthony: The hairdresser kidnapped me.

Me: Well it looks good, Ants – very distinguished! Okay so let’s put our show on before lunch arrives.

Anthony: Don’t you have to go to work?

Me: Not today.

Anthony: So how much money is in the bank? (He always says this too).

Me: Stop worrying about money – there’s plenty – tens of thousands, and that’s all thanks to you!

Anthony: I love you so much, Jules.

I am beginning to think that this daily banter, the habit of watching a show, eating lunch together, regular visits from my ma and other relatives and friends, might be the reason this amazing husband of mine seems to be improving!

Anyway, I suppose I should stop wondering about all of the whys of this weird and wonderful experience and just be grateful.

55 Comments »

“I’m gonna love you like I’m gonna lose you….”

There are many lines in this song https://www.youtube.com/watch?v=DC8FsIdVi9Y that echo one of my many recurring dreams about Anthony and me.

When I last posted, I described a dream where Ants had miraculously recovered; now that is definitely a beautiful dream.

A less beautiful, recurring dream is the one about death. In this dream, Anthony is dead and my dream-self is grief-stricken. But then my real-self wakes up from the dream and realises that he is alive after all. Many of the lyrics of the this song really got to me and are as follows:

I found myself dreaming…
Split second and you disappeared…
Wake up in tears with you by my side…
Breath of relief when I realised…
Whenever we’re standing…
No, we’re not promised tomorrow

Ming of course is not at all keen on either listening to, or reading, the lyrics of this song and, now that he has become musically superior to me, he likes to throw me his opinions:

It’s soooo repetitive, Mum!
It’s so cliched – oh, Mum, you can’t possibly like this song!
NO I DON’T WANT TO HEAR ABOUT YOUR ROMANCE!
Yes, let’s have a chat about love … I like this girl who….
NO I DON’T WANT TO HEAR ABOUT YOUR HEARTBREAK!
I’m off to my shed now, Mum. Love you!

I think I might just listen to the song one more time before I go to bed because I don’t care what the Ming says, this has become my song for Anthony.

32 Comments »

The beautiful dream

I have different versions of the same dream about once a week (I mean a sleeping dream, not a goal-ridden dream).

Okay, so, in the dream, Anthony and I, and sometimes Ming, have travelled a few hours from home to reach a destination that is either a wedding, or a party, or something like that.

We arrive and check into a beautiful room and while Anthony checks if the TV is working, I go to check out the bathroom and am suddenly jolted with hot/cold shock.

I have forgotten to bring his pills! These Parkinson’s disease pills need to be taken every few hours and at exact times and, if not, he will be paralysed, unable to walk, function normally, speak properly etc.

In the next bit of the dream, Ants and I are in a big room full of all of our wonderful friends and relatives and Anthony is lagging and very tired. I see that I need to get him up to our room and to bed and someone brings a walker or a wheelchair. I am panicked that I don’t have the pills to get Anthony mobile and I ask everyone to help me get him into the car so I can take him back to the farm where the pills are.

Then, all of a sudden, Anthony stands up, walks, laughs loudly, brushes off everybody’s worries and he and I go to our room. Then he and I go to bed, blanket ourselves in sleep until I wake up and panic because it’s 7am and he needs his PD pills!

But he is okay! In all of the different versions of this recurring dream, Anthony is always okay and we both laugh about how silly we were to panic about the pills.

And then I wake up.

It’s a beautiful dream.

19 Comments »

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