writing | jmgoyder

Restful

by jmgoyder

Sometimes I feel a bit guilty for being so totally relaxed and lazy in Anthony’s nursing home room. Okay so I did a bunch of paperwork there today but, for most of the afternoon, I just put my feet up on his knees and watched West Wing while he slumbered on and off.

I think this restfulness is good for both of us; he wakes up from a nap and almost always says, “Jules?” For me, it is good to be there because there must be many, many other times that he asks for me but I’ve gone home.

Most of the staff now know the white lie I want perpetuated – that ‘Julie will be back soon’ – and this seems to comfort Anthony (and me of course!)

This afternoon, as Anthony slumbered, I quietly packed up my things and put a pillow on the chair next to his, where I usually sit. He suddenly woke up and said:

Anthony: Where are you going, Jules?
Me: Just to get some groceries, Ants. I won’t be long.
Anthony: I am crazy.
Me: No, you are NOT crazy!
Anthony: I’m crazy about you.
Me: Oh … well, so you should be!

I no longer think being restful is a lazy thing; it beats the hell out of anxiety, and it beats the hell into acceptance.

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Changing

by jmgoyder

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

I have changed my mind so many times over the last few years, months, weeks, days, minutes, moments, about how to best care for a husband, 79, in a nursing home, and our son, 21, embarking on adulthood. It’s doubtful whether Ming will want chooks in his future life!

Not very long ago, whenever people talked about the weather, or gardening – whether it be small-talk or serious-talk – I would tune out. I have never been the least bit interested in anything relating to the actual job/hobby of gardening despite numerous attempts to get interested.

Okay, I got interested many times; but I didn’t remain interested, mostly because I was busy working at the university and bringing up the beautiful brat, Ming (who, by the way, isn’t interested in gardening either.)

Gardening was Anthony’s ‘thing’. His family (mother and younger brother) came here in the late 1950s to run a dairy farm and Anthony began planting things – camellias, palms, silver birches, flame trees, roses, citrus, hedges … and a whole lot of other stuff.

Up until the year before the nursing home, Anthony was still interested in planting, watering, and wandering about, in the garden. But he would get stuck! We only had the walking stick then so he would go out the back to check on a hose and then become paralysed and sometimes it took a whole hour to get him back to the house. Then, one day, when he was in his armchair in front of the fireplace, I told him not to move while I went up to the shop to get some supplies, only to find him face-down in the front yard; he’d fallen again!

Parkinson’s disease (and all of its off-shoots, including dementia) is an ever-changing condition that can make life tricky for those who care for family and friends inflicted. For example, sometimes I can show Anthony photos of home – the new chooks, the better-kept garden, the mowed lawns etc. and he will think he has been home.

But, at other times, Anthony will ask to come home and I will have to distract him. This is not because I don’t want him to come home; it’s because he is mostly immobile now so I actually can’t physically manage him. The guilt is ghastly of course but it is easily blitzed by my almost-daily company, in the nursing home, during the afternoons. And photos of the new chooks!

This morning this wonderful group of gardening people came over (it’s a group I’ve recently sort of joined) and each person had a good piece of advice for me. Plus everyone brings some produce to exchange – fascinating!

I am changing into a gardening person!

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

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Going with the flow of dementia

by jmgoyder

Here is one of my conversations with Anthony yesterday –

ME: I think we should get chooks again, Ants.

ANTHONY: Yes – good idea.

ME: But this time we should keep them in the chook-yard and not let them out at all – safer from the dogs and foxes. What do you think?

ANTHONY: So when do you start work?

ME: What do you mean?

ANTHONY: F said you’d be working for R.

ME: The vet?

ANTHONY: The veterinarian.

ME: Okay, the veterinarian if you want to be precise! Well, I’m not sure. Do you think I’d be any good at it?

ANTHONY: Yes, I do because of the chooks.

ME: Well I do love animals ….

ANTHONY: You’ll be fine.

There is a fair amount of debate around whether to ‘go with the flow’ – or not – when it comes to interacting with people who have dementia. With Anthony, I tend to fluctuate between ‘going with the flow’ and telling the truth so yesterday I suddenly became a vet.

But other times, when, for example, he is worried that his mother is home alone, I will gently remind him that she died many years ago. He usually accepts this quite well and is sometimes a bit embarrassed that he has forgotten this fact.

‘Going with the flow’ isn’t so simple though. If someone with dementia thinks there is a monster under their bed, it’s obviously not a great idea to agree. But if someone with dementia thinks there is a family pet under the bed, it’s obviously a great idea to agree.

Carers who work in nursing homes walk a tightrope of tact when responding to residents who have dementia. Alleviating dementia-induced distress can be a minute-by-minute challenge.

As Anthony is my husband, I don’t have to be quite so tactful with him and will sometimes go as far as to say, “You’re talking rubbish again!” OR “You’re hallucinating again!” We can turn the confusion into a joke and/or a hug that way.

Anyway, here they are – the two new hens. I was feeling a bit biblical so I have named them Martha and Mary. Mary is the one with the black feather marking. As you can see they have a huge yard!

I can’t wait to show these pictures to Anthony this afternoon!

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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 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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jmgoyder

wings and things

Restful

Changing

Going with the flow of dementia

Make Believe

Whoops!

Home is where the humour is!

Sleep-chuckling

Happy hours

Sunday afternoon at the nursing home ….

Nonsense!

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