Family | jmgoyder

‘Jake’s Mowing and More’

by jmgoyder

The above photo shows how out-of-control the wormwood hedge had become during the last few years of Anthony living in the nursing home. He used to take such pride in trimming that unruly hedge, in pruning the roses, in picking the camellias, in mowing the lawns etc. As for me? I was not the least bit interested, and never have been, in gardening.

But then, a couple of months ago, I discovered Jake. I had previously employed a lawn service – a lovely couple – just to do the lawns (5 acres) and Ming was sometimes unhappy about this because he felt he should be doing it himself. Anyway, the lovely couple moved into a different profession, Ming got full-time work and, as the grass soon leapt up to knee level, I decided I needed help.

So Jake came to the rescue and not only has he controlled the wormwood, he has also made this place look like it once was when Anthony was in control of things.

Yes – the above photo is of the same lengthy wormwood, now ‘Jaked’!

Anyway, yesterday this whole place was blitzed by Jake and I came home from the nursing home in the late afternoon and felt as if I were entering a park. The nostalgia was acute as I was reminded of that very first day when my parents dropped me off at this farm to be interviewed by Anthony’s rather formidable mother for the job of house-keeper/companion. I was a teenager so I didn’t really notice the garden but do remember vividly the impression that this was a place of beauty and magic.

Three decades later, this wonderful marriage tangled up by Anthony’s diseases and entry into the nursing home, this place, this farm, became a place of despair – mine. So I guess I just kind of gave up any interest in either the house or the garden; I was just too sad.

Fast forward to now and Jake’s lawn service has been a godsend in that this wonderful man, and his son and off-sider, have taken an interest in the place. I know now that I can call on Jake for garden jobs beyond lawn-mowing.

Anyone who can turn something shabby into a work of art is a person worth knowing.

[Jake: 0487343141]

I have a couple of my new gardening friends coming over tomorrow morning to hopefully give me their advice on vegetable gardening and chooks, so I think I will just pretend that I mowed the lawn myself. They are sure to believe me – hahahaha!

Thank you, Jake.

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Make Believe

by jmgoyder

When Anthony asked me about the faulty electric fence today, I reassured him that it was fixed.

Anthony: Really?

Me: Yes! Would I lie to you?

Anthony: I don’t know.

Me: Well guess how I know the electric fence is working?

Anthony: How?

Me: Because I put my hand on it and got a terrible shock!

Okay so this conversation elicited one of Anthony’s amazing smiles (when we were married I didn’t realise he was a sadist!)

Anyway, now that I am being more diligent at recording our conversations, I’ve noticed that my responses to Anthony’s questions or statements (often bizarre due to dementia) are really bland. So today I thought I’d liven things up a bit by telling the electric fence story – total make believe!

There was a period of time recently where I thought Anthony had completely lost his ability to speak, converse, tell stories. But now – just like the return of his smile – his verbal skills seem to have improved.

Of course he is still dozy, and/or incoherent, and sometimes has that blank Parkinson’s expression on his face, for much of the time.

The fact that Anthony looked through his nursing home window and saw an electric fence that wasn’t there gave me an opportunity to enter today’s ‘story’. I am so excited to realise something I should have realised years ago – that I can make things up to match what he is saying – that I can use my imagination to meet his hallucinations.

Make Believe

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Whoops!

by jmgoyder

Oh I am such an idiot!

Okay, this is what happened. I stayed with Anthony later than usual this afternoon because his favourite nephew arrived for a visit and I didn’t want to miss out on that. Then, Anthony’s 5pm dinner arrived as the nephew was leaving, so I ended up helping Ants with the soup, mornay and dessert.

Once that was done, I turned the television onto the ABC News channel and put it on mute as I gathered my stuff to leave. Usually I say I am going shopping, or to the chemist and I’ll be back soon but tonight I told the truth.

The only reason I admitted I was going home was because the first thing he said to me when I arrived this afternoon was:

You didn’t come back last night. Where did you go?

Now the trouble with lies is that sometimes you forget them. So I said:

I can’t remember!

Anyway, as I was putting a jumper on him, and getting a blanket for his knees, and putting the two camellias I’d picked into water, and settling myself into a chair next to him, I suddenly remembered. The following is our conversation:

Me: That’s right! I remember now!

Anthony: You always say I’m the forgetful one.

Me: Well I’m getting just as bad. Anyway, I went home to make the pea and ham soup – remember I showed you those massive ham hocks?

Anthony: Where is the soup?

Me: Whoops – I forgot to bring you some. I will tomorrow. Sorry!

Anthony: Well I’ve just come back from U. and I.’s place in Serpentine. [Note: these relatives are deceased, and Serpentine is 160 kms north]

Me: Really? So you must be exhausted!

Anthony: Yes. So I just want you to get some paper animals in the glove box.

Me: Okay – anything else?

Anthony: A couple of paper animals.

Me: Which ones?

Anthony: Well, they should be in the letterbox … but dead.

Me: Don’t worry, I’ll take care of it.

Anthony: You might be sitting on them. Get up.

Me [getting up]: Nope – no paper animals.

Anthony: They don’t appear to be there.

Me: You’re hallucinating again, Ants.

Anthony: You always say that.

Me: Can you just shut up so we can watch the series?

Anthony [fussing with the blanket on his knees – a constant thing]: The little chap’s had a good day; he hasn’t moved much.

Me: That’s good. It means he’s happy, Ants!

So the fragments of our afternoon conversation ranged from eloquent to incoherent, nonsensical to logical, silent to noisy etc. and I still haven’t figured out if the ‘little chap’ on Anthony’s knee is baby Ming or a dog!

All in all, it was a great afternoon but, just as I was leaving, Anthony suddenly became agitated.

Anthony: But you can’t leave me here. We need to be in the same bed.

Me: I have to go home to rescue the pea soup and I’ll come back tomorrow morning.

Anthony: Why can’t you stay here with me tonight? I don’t know this place! I’ve only ever stayed here once before and it’s where J. and P. got married.

Me [sternly]: Listen, Ants, you are in a nursing home and you are sleeping here tonight and I am going home but will be back tomorrow morning.

Anthony: No!

At this point one of the wonderful carers, having overheard our conversation from an adjacent room, came into Anthony’s room to reassure him and I gave him a millionth kiss and left.

It’s the first time for ages that I have felt distressed driving home. No tears but just distressed that he was distressed.

So an hour ago I rang the nursing home and the nurse-in-charge told me that he had just been settled into bed but she would go and check again. She is, by far, Anthony’s favourite and, when he was upset and confused earlier he actually asked for her by name, describing her as the nice one in the red shirt. She has even been nicknamed his ‘girlfriend’.

Anyway, I’ve now decided to never ever tell Ants that I am going home – never! I will go back to saying things like:

Just going to the chemist to get toothpaste; what kind of chocolate do you feel like; do you want beer? etc. AND: I won’t be long – see you soon….

No more whoopsies!

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Home is where the humour is!

by jmgoyder

After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.

1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and

2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.

The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.

Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.

So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.

For example:

Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?

Anthony: Yes (looking at me in a sneaky way).

Me: So, when exactly do you do these sit-ups?

Anthony: When they need doing.

He makes me laugh more than he makes me cry, this fantastically funny husband of mine!

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Sleep-chuckling

by jmgoyder

This afternoon I went into town to see Anthony. By the time I’d done bits and pieces of paperwork and housework, I almost didn’t go in after all. I didn’t feel like going in, but then the guilt got to me.

I arrived later in the afternoon than usual after doing a couple of in-town errands. Anthony was asleep in his armchair so I put a blanket on his knees, made sure the heater was on, put the television on mute and sat down next to him.

Usually Ants wakes up when he hears my voice or anybody’s voice but this afternoon he was in slumber mode and, no matter how much noise I made, he didn’t wake up! Nurses came and went, and he even swallowed his 4pm pills semi-asleep, then I had to talk on my phone for ages, then Ming came in after knocking off, then a couple of the nurses came back for a chat, other staff came in to change towels in the bathroom, a cup of tea was brought in ….

…. And throughout these couple of hours I watched (on and off) our latest television series with my left hand inside Anthony’s shirt collar. But he still didn’t wake up!

I wanted to tell him so many things: how the camellias are thriving (I’ve been taking little flowerettes in lately); that Ming has a new friend; that I’ll bring more chocolate tomorrow; that I missed him so much that looking at photos of our years before Parkinson’s sometimes made me cry; and how he was, to me and to Ming, the best example of a good father and husband.

Of course I have poured out these various profundities to Ants before but today he was so unwakeably asleep that I had to pour all of that stupid emotional stuff into the toilet paper in his bathroom.

On resuming my position by Anthony’s side, my hand back inside his collar, I wiped his chin then saw that he was smiling in his sleep. Once again I tried to wake him gently but it wasn’t possible to get much more than a few blinks and then he was asleep again.

Then, all of a sudden, Anthony began to chuckle in his sleep. Of course I have seen this before with him but only occasionally. This time, the chuckling went on and on, for well over an hour! It was amazing and beautiful and I am so glad I was there to witness this.

Tomorrow, I will pick camellias to take in, then I will tease him about his sleep-chuckling haha!

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Happy hours

by jmgoyder

Anthony’s increasing ability to smile again continues to flabbergast me. This afternoon, I arrived at the nursing home and, on entering his room, saw that two of our best friends (a husband, F, and wife, J) were already there. J whispered to me that Anthony’s face always lights up when I come into the room. They are frequent visitors to Anthony, so they often see this but the fact that J said this to me really made my day.

J has a sense of humour that is slicingly clever and she has this ability to get straight to the point with a unique mixture of irony and kindness. When she invited Anthony to the movie she and F were going to see – about euthanasia – Anthony politely declined and I guffawed.

F (an old school friend of Anthony’s) constantly teases him about past girlfriends but this afternoon Anthony managed to eke out a couple of eloquent retorts and the mutual banter was a delight. I poured a couple of small glasses of wine (it’s Sunday!) then F and J left to go and see the euthanasia movie.

It was such a happy hour and I am so grateful for these friends who help to normalise the situation. J told me that when they arrived and asked Anthony where I was he told them I was hanging out the washing! I think this means that perhaps my presence in his room every afternoon (well, mostly) explains my absence in the mornings and nights. It is possible that he thinks I am doing chores, cooking dinner, possibly even gardening!

Now that I am over the whole tragedy-of-husband-going-into-nursing home, and now that Anthony, too, accepts the status quo and often thinks we are at home anyway, our afternoons are happy.

I usually sit on the side of Anthony’s armchair and we watch another episode of whatever television series I’ve acquired; he often sleeps the afternoon away; I sometimes socialise with the staff and other residents; cups of tea + cake are delivered; his pills are dispersed by his favourite nurse, D, who Ants calls his girlfriend.

When I was unwell last week my wonderful mother substituted for me and sat next to Anthony in his room, knitting, until he suddenly said “Are you going yet?” Hilarious.

And Dina, my decluttering friend, visited Ants on a day when she and I were supposed to be having brunch (but I was still bilious). What an incredibly kind person to do this for me!

The funniest of these many happy hours, though, are Ming’s visits to Anthony. Big, loud and assertive, he goes into Anthony’s room and, if Ants is asleep in his chair, Ming doesn’t wake him. But if Anthony is awake, Ming will lie on the bed and they will have a chat. It’s probably quite alarming for staff to come into Anthony’s room and see this great big hairy-legged boy-man-creature lying on Anthony’s bed with no care whatsoever about protocol or the cleanliness of linen.

Sometimes, when Ming’s and my visits to Anthony coincide, there is friction between Ming and me. I’m not quite sure why this is but he seems to relate better to Ants when I’m not there. And vice versa. Nevertheless, Anthony’s pride in Ming is overwhelmingly evident and he often ‘sees’ Ming in the corner of the room (hallucinations).

I’ve begun to appreciate every single hour, especially the happy ones. These hours more than make up for the desolate ones.

[Note to blogger friends: I am a bit preoccupied with above so haven’t been reading – sorry]

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Sunday afternoon at the nursing home ….

by jmgoyder

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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Jul 29

‘Thunking’
by jmgoyder

Thinking 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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Jul 27

Nonsense!
by jmgoyder

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.

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.

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?

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!

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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Jul 24

Predicting unpredictability
by jmgoyder

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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