Parkinson’s disease | jmgoyder

Swings and roundabouts

by jmgoyder

Yesterday I said, rather blithely, “I refuse to be sad” (about Anthony’s Parkinson’s disease etc.). This morning I realised why it’s possible for me to say this.

Anthony isn’t sad!

It’s as simple as that. Okay, so saddish moments come and go, and the first year of him being in the nursing home was a hell of mutual sorrow. But, in retrospect, it was me shedding most of the tears, not Anthony. In fact often, when I left to come home, he would comfort me.

But it’s now that matters and in-the-now neither of us is sad, which is a bit of a miracle really. The weird irony is that I would not be able to cope with Anthony’s illnesses if it weren’t for his own emotional resilience. I’m not very good at emotional resilience, but Ants is.

People often think that the person in the nursing home is the vulnerable one and that he or she is the one in need of comfort. But sometimes it’s the other way around; it’s the visiting spouse or daughter, or grandson, or friend, who is in need of comfort.

Anthony comforts me!

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Sep 30

‘Who’s that silly old fool?’
by jmgoyder

I showed Anthony these photos just after I took them with my phone the other day. They’re a bit blurry and way too close-uppish but I wanted to show him what he looks like sometimes.

The first photo shows his usual facial expression. This is often termed the ‘Parkinson’s mask’ and is due to the fact that the facial muscles aren’t working very well.

Anthony: Who’s that silly old fool?
Me: It’s you!
Anthony: Ghastly.

So then I tried to make Anthony look me in the eyes by shouting “Look me in the eyes or I’ll bop you!” Ants and I have discovered that this rather dramatic method works well.

Anthony’s smile, trapped for so long inside that Parkinsonism mask, has, as I’ve said before, begun to occur more and more.

Ming disagrees with me because he says that whenever he enters Anthony’s room, he is greeted with that smile. What he doesn’t realise is that his visits are excitingly unexpectedly haphazard, whereas mine are (perhaps) boringly regular.

When I showed Ants that last photo of his smile, he took my hand in his and kissed it exactly ten times before saying…

Anthony: Who’s that silly old fool?

Me: My hero.

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Sep 28

Dilemma
by jmgoyder

Last week I received the following email:

Dear Julie,
I am writing with regard to your book titled We’ll be Married in Fremantle. Given increasing warehouse costs, we have had to review the amount of stock that we are holding for a number of titles where sale numbers each year are low. Unfortunately this book is among those selected to be removed from stock. We would, however, like to offer you the opportunity to purchase as many of these copies as you choose at a price which will cover our costs of shipping and handling….
CEO of … Press

Initially I felt humiliated, then I realised that it is now a rather ‘old’ book, having been published in 2001. I also comforted myself by realising that most of the 5,000 books had sold and I could rescue the 300 or so remainders from being pulped at very little cost. I am still deciding what to do.

It’s not that I have any intention of on-selling the books; I certainly don’t want to have 300 or so copies of my own book on my bookcase to remind me that it wasn’t a bestseller; and this dilemma has nothing to do with ego.

During the time of writing my PhD, then re-writing it into a book (several years altogether), I remember being absolutely driven. I wanted passionately to write something that would change attitudes to people suffering from Alzheimer’s disease. And my thesis/argument was so simple: listen, and respond to, the stories, even when they don’t make sense.

So I have a few creative ideas of what to do with those 300 or so copies IF I decide to rescue them from obsolescence.

Prince and Princess don’t have to worry about these kinds of things – oh to be a bird!

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Sep 23

There’s ‘a Julie’ in the mirror.
by jmgoyder

There is something beautiful about the fact that sometimes Anthony will see the same camellias I picked for him days ago as today’s – new and fresh.

The other day, as I was leaving Ants to come home, he spotted my reflection in his wardrobe mirror. (His armchair is in one corner of the room and, if he turns his head to the right, he can see himself in this mirror).

Anthony: There’s a Julie over there.

Me: (turning to face myself in this mirror) Yes, that’s me … actually that’s US in the mirror.

Anthony: Oh, of course.

Me: You idiot!
(Don’t be alarmed; Anthony quite likes a bit of gentle verbal abuse now and then).

Apart from the visual hallucinations (often of cats which is weird because Anthony doesn’t like cats), there is also a certain amount of visual confusion lately. Ants’ view to the left is through a window overlooking a lawned area where he often sees cattle; the newsreaders and/or characters on television are sometimes mistaken for real people to whom Anthony will often respond verbally; his walker can become a lawnmower; the staff going up and down the hallway are ‘kids’ or ‘teachers’ or long-deceased relatives; and the blanket on his knees (lately a source of enormous confusion as the day progresses) is unrecognisable to him as a blanket until ….

Me: Will you stop pushing the blanket off! I thought you were cold, Ants!

Anthony: It’s just … I don’t know what this is, Jules.

Me: It’s a blanket, to keep you warm, so I’m going to put it back on your lap and put your hands under it and, if you move, I will bop you!

Anthony: You’re beautiful when you’re angry.

Me: Argh!

This particular blanket has a tartan pattern and a fringe, and is one of ours from home. Other rugs and blankets (particularly those with patterns of any kind) can really confuse Anthony, but I have only recently realised this. For example, if the pattern is one of flowers, Ants might see these as real flowers and want to touch or rearrange them.

None of these visual hallucinations/misrecognitions currently cause Anthony undue distress, especially when I am with him. On the other hand, I sometimes wonder what he might be ‘seeing’ when I’m not there. When I think about this too much, I get worried, so I mostly try not to think about it for the sake of my own peace of mind. After all he is in good care.

But I just wish I could somehow leave myself in that wardrobe mirror so that whenever Anthony glanced to the right I’d be there….

…. like the camellias.

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Sep 22

A brief moment of panic
by jmgoyder

Yesterday morning I received a phone-call from the nursing home manager to say that Anthony had had a ‘turn’, most probably a TIA (transient ischemic attack or mini-stroke). He has had these before but this time he was unresponsive for ten minutes.

As I rushed into town, I experienced a brief moment of panic even though I knew Ants had recovered from the TIA, because the more of these he has the more likely it is that he will have a serious stroke. On the other hand, he has been having TIAs from well before I knew what they were and twice, when he was still living at home, I had to call the ambulance. And, during his years in the nursing home I suspect he has had more of them than anyone realises because he sleeps a lot anyway.

Four years ago, at the huge 75th Ming and I held for him here, I remember being fairly certain it would be Anthony’s last birthday. His prostate cancer was well advanced and so was the parkinson’s. Daily tasks had become extremely difficult for him and I was exhausted. Perhaps it was this exhaustion that made me more accepting of the fact that he might die soon.

But now that all his care needs are fulfilled by the nursing home and I have the leisure to simply enjoy Anthony’s company, the thought that he might die soon is unbearable. Having outlived his prognoses by several years already, I have become used to the idea that he will continue to live for a long time.

So the thought that he might either die or become even more incapacitated by a stroke is horrifying. I can’t imagine my life without him but maybe I should prepare myself a bit. Who knows?

Anthony’s fortitude amazes me; he is so resilient! When I said to him yesterday, “You had one of those mini-strokes again, Ants”, he retorted, “No I didn’t – I just fainted.”

But for the rest of the day he kept hold of of my hands with both of his until I left to come home with the usual goodbye.

Anthony: Don’t be long, Jules.

Julie: I’ll be back soon, my beautiful man!

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Sep 20

Jigsawing
by jmgoyder

Blogs can be like those really difficult jigsaws that it might take you years to complete but, at the end, you can’t quite complete because of all the missing pieces. You know exactly what those missing pieces look like, and how they are shaped, but you have to accept that they have probably been gobbled up by the vacuum cleaner, then used to make a bird’s nest; they’re gone but not gone.

Some time ago, I paid a small amount to have my blog converted to book-like format so that I could print it out. The reason I did this was not so that I could admire my clumsy, incoherent handiwork, but so that I could re-shape it into some sort of coherent story about Parkinson’s disease.

Okay, so the PDF conversion meant that it would print from 2011 to now rather than backwards-in-time. Because each year consisted of hundreds of pages, I ended up with seven PDF files and happily printed out one and a half of these files until my printer
spat
the
dummy!

Well, after weeks of wrestling with/ coaxing/ swearing at /wanting to OBLITERATE/ and finally giving up on, my uncooperative printer, I came to my senses and put all of the files onto a usb and took it into a print shop. Half an hour later
hey
presto!

Now, hopefully, within nearly 3,000 pages of blog words and images – a jigsaw of thoughts and emotions spanning nearly four years – I will find something that is worth editing into a useful and publishable book.

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Sep 18

Parallel universe
by jmgoyder

I think one of the things that is most bewildering, if you are caring for someone with dementia, is the fine line between present-tense lucidity and remembered lucidity.

For example, when I visited Anthony the other day, he was eager to tell me the latest news:

Anthony: Have you seen the news, Jules? We have a new prime minister.

Me: Yes, I saw that too.

Okay, so the above shows how absolutely ‘on the ball’ Anthony can be especially when it comes to current events. I always leave the news channel on his television before I come home because he has always loved watching the news.

But the very next thing Anthony said amazed me ….

Anthony: Mum will be shocked!

This is the kind of conversation that always gives me pause as I try to process the fact that Anthony has, within less than a minute, conflated the reality of now with the reality of over three decades ago. It sometimes seems extraordinary to me that Anthony can so expertly move between eras in the space of a couple of sentences.

Perhaps this is why what used to seem tragic to me has now become fascinating, and sometimes even comforting. After all, I loved Anthony’s mother, who we younger ones called ‘Gar’ so I was catapulted into nostalgia-land briefly, remembering her canny opinions on politics.

Me: Do you think she approves of the leadership change?

Anthony: Yes, but is she all right?

Me: She’s fine, Ants.

One of the last things Gar said to me as she lay in the hospital bed, dying, and I held her hand, was, “You will look after Anthony won’t you”, and I promised her I would. When I made that promise, Ants and I were still eons away from having a romantic relationship, let alone a marriage! So, in retrospect, it was a bit of a far-fetched promise, but I meant it.

Of course, as a teenager, I had no idea how things would all unfold. It is uncanny now to be reassuring Anthony (who is approaching the age Gar was when she died) that she is all right.

‘Parallel universe’ seems to be the phrase that best describes the strange but wonderful space in which Anthony and I connect, cognitively and emotionally.

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Sep 15

Missing Ming
by jmgoyder

Ming has met a beautiful girl and, as a result, I hardly ever see him, except fleetingly.

Of course I still hear him climb in the front window in the early hours (because I keep forgetting to have a second key cut, but I did remember today!)

And, occasionally we indulge in leisurely conversations during the five seconds he has left to get ready for work.

Me: Good morning, Ming! I shout from my bed.

Ming: Morning, Mum. What do you want? he shouts from the bathroom.

Me: Oh, darling, I don’t want anything! How’d the party go?

Ming: I don’t have time for this morning conversation thing, Mum. Can you just leave me alone so I can get ready for work!

Me: Okay, sorry.

It’s all a bit surreal for me. Of course I haven’t actually lost Ming, and I always knew that one day he would meet someone who would both challenge and embrace his opinions, personality, habits, originality.

The beautiful young woman with whom Ming is involved has a similar ‘old soul’ wisdom to his but is much more academic. Every time I meet her, I am impressed by her integrity, and honesty, and the way she looks at Ming.

So, yes, I miss Ming in the sense that I don’t see him as often as I used to. After all, why would he want to be home with me when he can be out and about?

Nevertheless, I always knew that one day I would be without Anthony here (already happened), and maybe without Ming here (happening).

Hence the birds:

I am so proud of this Ming of mine.

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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.

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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