jmgoyder

wings and things

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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‘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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38 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.

35 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 »

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.

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Day off

I decided to take a day off from visiting Anthony so just texted Ming to visit after work and he texted “Sure” – brilliant!

Instead I have been catching up with laundry and housework and further decluttering. It’s astounding how making myself accountable to Dina is so effective!

The weather is winter warm so at one point I took off my jacket and …
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Well at least it wasn’t a cockroach!

My feeding of wheat to the peafowl and guinnea fowl is deliberately haphazard because there is plenty of ‘food’ for them without the wheat and I don’t like them getting too dependent. Nevertheless as soon as they hear the back door open, they start running towards me – it’s so funny.
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Then there is quite a bit of competition as to who gets to eat first.
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Yes, I know she looks like Gutsy but she isn’t.

After they’ve eaten their fill, they bask in the winter sunshine.
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I’m a bit rusty with the photography but wanted to take a few new photos to show the women I’m visiting in the nursing home, three of whom are not in the dementia cottage. Yesterday I visited Gertrude (not her real name) who has only recently become a resident. She has Parkinson’s disease too and she was commiserating with me about Anthony who she said was “so young!” I guess 79-year-old people do seem young to 90-year-old people! At one point we discussed the pros and cons of diseases:

Gertrude: Tell me, which do you think is worse – Parkinson’s disease or that other one? (She pointed to her head)

Me: You mean Alzheimer’s disease?

Gertrude: Yes.

Me: Well Anthony has both now so I’m not sure ….

Gertrude: Both? This isn’t fair for him.

Me: Well it’s not Alzheimer’s exactly; it’s dementia caused by his kind of Parkinson’s disease.

Gertrude: I don’t have that.

Me: No, I can see that! You don’t have the shaking thing either and Anthony is the same.

Gertrude: I’m improving and sitting in this chair is so much better than lying in that bed.

Me: Do you have pain?

Gertrude: Just a bit of arthritis. Nothing much.

Me: I’m so glad. Anthony doesn’t have pain either – such a blessing.

We exchanged a smile and a hug and I went back to Anthony’s room which is in a different section.

Well I better get back to finishing the jobs I need to list as “done” for my email to Dina tonight!

22 Comments »

Still Anthony

A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.

I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.

Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.

I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.

Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.

Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.

Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.

I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.

Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!

Still Anthony.

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30 Comments »

Paperwork phobia

I have a bit of a paperwork phobia.

I don’t go to the post office anymore because it is too scary. Ming usually collects the mail on his way home and brings it to me in my writing room. I politely thank him or else say:

TAKE IT AWAY, TAKE IT AWAY, TAKE IT AWAY – JUST EAT IT!

I don’t quite know why I have this phobia because most of these letters are relatively harmless, even innocuous, and I pay most of the bills online because I don’t have an email phobia (luckily). It would be good to admit that my paperwork phobia was due to my objection to so many trees being cut down to create all of this mail but, even though I agree with myself here, it’s not that. It’s more to do with the envelopes and what might be inside them.

So the letter(s) sit on my desk briefly, threateningly, until I throw carefully place them, unopened, into the box of things-to-do.

Once the box is full, I take it to the nursing home and place it on Anthony’s bed. We hug and I explain it is a ‘paperwork day’ and that I need his moral support. It is only then that I have the courage to open all of the envelopes, file anything important and trash the rest. This usually takes about 10 minutes.

Okay so this is a bit tongue-in-cheek but also very true. I literally can’t seem to do the paperwork unless Anthony is by my side and, once it’s done, I am so happy that I get a bit frolicky and this gets a smile.

I also have a bit of a phone phobia ….

26 Comments »

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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