jmgoyder

wings and things

Sep 13

The dilemma

by jmgoyder

One of Anthony’s favourite nephews visited on Father’s day last week and wanted very much to take us for a drive. He already knew how difficult this could be and that I had decided, months ago, to stop trying to do this by myself.

Of course, with the nephew there, Anthony rose to the occasion with alacrity and, with only a little bit of help from me, was able to walk up the hallway and outside using his walker. Another ‘plus’ was that it was morning and Ants is almost always more mobile in the mornings. Getting him into M’s 4WD vehicle proved to be a ‘two-person’ challenge but we did it!

It was a chilly but sunny day so M drove us around town and eventually to a cafe where I zipped in to get coffees and cake that we could eat in the car. Over the last few years, we have done this several times, and I have by myself of course, but M’s determination to make this work, to get Anthony out and about, has been such a blessing to me. I hate to ask for help but I am always happy to say yes if a tangible plan is offered and M always does this.

On the way back to the nursing home, M suggested that we park near the restaurant where Ming works – Corners on King – in the hope that Ming might be able to come out and say ‘Happy Father’s Day’ to Ants. This was a great success and then, on returning to the nursing home (just before lunch) Ants was still mobile enough to use his walker to get back to his room, with us by his side.

So what is the dilemma?

Okay, it is this: It is a very long time since I have brought Anthony home to the farm. Often he will ask me to take him home to his childhood home; sometimes he will ask me to light the fire in his nursing home room (thinking that we are home), and I will simulate doing so. His fantastic nephew, M, and his younger brother, J, want me to bring Anthony home and solicit their help.

These gestures are wonderful but what many people don’t realise is that Anthony now has his own Parkinson’s disease dementia. This means that he only occasionally remembers home.

I am doing my best, but it is a daily dilemma.

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Sep 12

Spring chicken

by jmgoyder

One of the best things about getting chooks again is telling Anthony the stories that go with the chooks. He gets a real kick out of my ineptitude.

A couple of days ago I picked up another couple of chooks from some serious breeders who go by the name of Chookloop. As soon as I got home, I put them in the chookpen with the other four but they’re a bit smaller so the big ones started pecking them and one of them was smart enough to figure out how to get out of the chookpen – argh (it took me ages to catch her).

So I brought them inside and put them in a box on the back veranda with some food and water. But, as soon as I turned my back, the smart one flew out and followed me into the kitchen where she hid behind the fridge until I was able to ease her out with a fly-swat (another hour).

I ended up putting them outside the back door in an upside down laundry basket which is where they spent their first night. The next morning, I went out to replace their water and, as I was doing so, the smart one got out, so I let the not-so-smart one out as well. They had a wonderful time frolicking under the fig tree. It was only when I attempted to catch them and put them back under the laundry basket that I realised I might need yet another set of ages/hours.

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Notsosmarty was relatively easy to grab, but Smarty eluded me for well over an hour. I finally had to give up being gentle and simply threw myself into the shrubbery under the fig tree in a kind of football tackle which left us both muddy and disgruntled. I gave her a little cuddle, she pooped on me, and a friendship was born.

Since then, they have both spent a couple of nights in the ground cage we raised the guinnea fowl and peafowl in eons ago. I’ve placed this inside the chookyard so that the other chooks can get used to them without being able to peck them. They are also protected from crows, but they do look a bit miserable this morning because it is so cold and wet.

It is great to be able to answer the dreaded question, “So, what have you been up to lately?” with, “I have some new chooks!” instead of my usual, faltering, “Oh, this and that.”

It’s quite refreshing, too, to be able to give Anthony some new news and, as he has always loved chooks, it is a mutually enjoyable topic of conversation. What I like most about this is that the new chooks, despite reminding us both of previous chooks (and even chooks Anthony may have cared for as a child), are a fresh addition to the conversations we have in the cozy world of his nursing home room.

Okay, a bit of dialogue:

Anthony (referring to ‘my hero’ of yesterday’s post after she popped in with his clean laundry): That’s the girl, right?

Me: Yes – she is wonderful.

Anthony: And she’s on our side isn’t she.

Me: Of course!

Anthony: Your hair needs combing (oh why is this such a preoccupation with him?)

Me: Why the hell are you so obsessed with my hair? It’s windy outside, and raining. I’ve battled a storm to come and see you and all you can do is criticise my hair! I’ll have you know this is the best cut and colour I’ve ever had and I adore my hair-dresser.

Anthony: Give me a comb.

Me: What? Why?

Anthony: I can fix you. You’re still a spring chicken.

Hence the title of this post which, remarkably, ties in with the chook thing – ha!

PS. After Anthony combed my hair, I ruffled it up a bit and he smiled the benevolent smile of a chook-owner.

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Sep 5

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!

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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!

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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!

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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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Aug 26

The best gift!

by jmgoyder

It is over three months since I was employed part-time in the dementia cottage of the nursing home and I really miss seeing those residents oftener than I can now.

Even though I visit from time to time during the week, it still feels a teensy bit awkward due to my status of employee having changed to that of visitor. I know many of the relatives and most of the staff so I have been trying to figure out what gifts to bring that will make my occasional visits quiet and seamless – unobtrusive.

There are strict rules now in most nursing homes about gifts. I.e. do not offer chocolates, chilli olives, or brandy, to residents (yes, that was me – sorry!) Also, do not give staff any gifts whatsoever or it may seem like a kind of bribery (this rule is only hearsay but it made sneaking in 6 pizzas one night, two years ago, very exciting!)

Anyway, one of the things that delights Anthony most (apart from chocolate cake with lashings of cream) is the singular bloom of one of his many camellia trees.

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The above is one of the many I bring in daily to Anthony’s room and that’s what gave me the idea of taking lots of camellias into the dementia cottage. After all, when there is someone at the door with flowers, the door is usually opened!

My heartfelt thanks to the staff who look after those with dementia, and those in high-care like Anthony. You are legends so perhaps I should bring a camellia tree in!

I have never picked so many flowers in my life!

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Aug 24

Make Believe

by jmgoyder

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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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Aug 22

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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Aug 19

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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Aug 11

A new adventure

by jmgoyder

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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Aug 2

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

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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