jmgoyder

wings and things

Imagined conversation 20

Anthony: Who are all of these men you keep thinking about?

Me: Will you please STOP reading my mind like that; it’s so disconcerting!

Anthony: Well, who are they?

Me: If you can read my mind, surely you know who they are.

Anthony: But I want to hear it from you, Jules.

Me: Okay, they are just a bunch of CEOs, film executives, producers and….

Anthony: I don’t like it.

Me: What? I thought you’d be proud of me!

Anthony: [potent silence]

Me: Oh. My. God. Are you actually jealous? I can’t believe it. Yes, you are jealous, aren’t you!

Anthony: Well I am a bit, actually. I don’t want you to want them to like you; it doesn’t feel right.

Me: Ants, there is absolutely nothing romantic going on, I can assure you. It’s you I want them to like, not me!

Anthony: That’s good then.

Me: So are we clear now?

Anthony: Sorry, Jules. I just don’t want to lose you.

Me: You couldn’t lose me even if you wanted to, Ants.

Anthony: So what do all of those guys think of me?

Me: They think you are wonderful, Ants – absolutely wonderful! Star material!

Anthony: You are so full of BS Jules.

Me: I’m meeting one of them tonight for cocktails because….

Anthony: For God’s sake, Jules – don’t do anything stupid.

Me: Gotcha!

 

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Dementia and Depression

The title of this post is a bit misleading (intentionally) because it implies that Depression is an off-shoot of Dementia and, yes, sometimes this is the case.

Anthony, who recently turned 81, has Parkinson’s Disease Dementia but, even after having been in the high-care section of a nursing home for five years, he is rarely depressed.

Julie (that’s me), who recently turned 58, has Depression in the clinical sense – i.e. she has a disease in much the same way that Anthony has a disease. But, like Anthony, she is rarely depressed. There is a rather wonderful irony here.

I am not quite sure why I wrote the above paragraph in the third person except for the fact that I have been so deeply embarrassed by my diagnosis for so many years now that I find it difficult to admit. Admitting it now is my way of combatting the stigma that still exists, and rejoicing in the fact that there are treatments; that I have been helped by these treatments (medicinal and psychological); and that I have become sensitive to others who suffer like I used to.

In recent weeks I have had the most ghastly outbreak of Depression and yet, paradoxically, I have been able to function normally whilst visiting Anthony, looking after the new puppy, and interacting with friends and family. Ming is, of course, my priority, my favourite person, my rock but also, perhaps, my downfall in the sense that I feel I have failed him in so many ways.

There is a huge difference between Depression and being depressed; the former is a condition and the latter is a temporary mood. Obviously this is up for debate and I would appreciate feedback.

Dementia, on the other hand is, at least for Anthony, irreversible and ongoing/worsening. And yet he has the most amazing ability to comfort me, and to be so accepting when I leave him to ‘go to work’ (my latest ruse).

Me: I have to go to work. Will you be okay?

Anthony: Well, I’ll have to be, won’t I.

Me: So what would you rather have – me here with you or me making money?

Anthony: The money.

This has been a bit difficult to write so thanks for listening x

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An ‘aha’ realisation

Today I did some volunteering at another nursing home before going to see Anthony. I told him I had just come from work (I call the volunteering ‘work’ because Anthony’s lifelong concerns about money are still a big part of his psyche).

Anthony: So how much money is in the bank?

Me: Thousands!

Anthony: How many?

Me: (pulling a fictitious figure out of the air) $35,000!

Anthony: That’s not bad.

Me: What do you mean ‘not bad’? My job is making us rich! You should be proud of me!

Anthony: I am, Jules.

Me: Ants, the reason we are so wealthy is due to all of your shares and your hard work. We don’t ever have to worry about money again because you are such a good provider!

Anthony: But did you turn the pump off?

Me: Ming does all of that now.

Anthony: What about the calves?

Me: All safe, tethered and beautiful. You should be proud!

Anthony: I fixed that fence this morning.

Me: I know – thank you. Everything is fine now.

Anthony: But what about Mum?

Me: Ming is with her – she’s fine.

Anthony: Okay.

Me: I have to go back to work now – will you be alright?

This was our conversation at about 4pm today and I used ‘work’ as a way to leave him with the assurance that I would be back soon. As I’ve said before on this blog, telling Anthony that I am going home often distresses him because he wants to come home too – of course!

I have been naming the above such conversations as “Dementia dialogues” and I sometimes worry that this title may be construed as demeaning or patronising to Ants and other people with Dementia. This is certainly not my intention.

As I was leaving, we had this conversation:

Anthony: You don’t have much of a life do you.

Me: What are you talking about, Ants? I have you and Ming – what more do I need?

Anthony: But we’re all split apart.

I was so shocked by the lucid poignancy of this statement that my heart felt like it did a somersault. Anthony said this without a flicker of unhappiness and I remembered how factual he used to be – how pragmatic.

And then, just now, before I began to write this post, I realised that Dementia might affect, and sometimes kill, physical and cognitive memory, but it doesn’t necessarily affect emotional memory.

I told Ming what Anthony said today and he punched his heart softly.

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Dementia dialogues 9/10

Me: How come there’s water all over the floor? Did you tip your drink out again?

Anthony: Yes, because everybody is dead.

Me: What?

Anthony: This is a funeral home.

Me: No way! This is a nursing home – remember?

Anthony: All of the kids ….

Me: Are they still bothering you?

Anthony: I had to fight one last night.

Me: Did you win?

Anthony: Half and a quarter….

Me: Good on you, Ants! They won’t be bothering you again, I’m sure.

…………..

Anthony: Well come on, Jules – let’s go.

Me: Where?

Anthony: Around the block.

Me: Which block? The farm or the nursing home?

Anthony: The rose garden.

Me: What rose garden?

Anthony: Along the driveway!

Me: It’s too rainy and cold, Ants – sorry. Maybe tomorrow?

……………

The last several weeks have been a bit of a challenge for me because my anxious/depressive tendencies roared into my brain – WHAMMO! – when I mistakenly thought Ants was on the brink of death. I don’t want the knife edge of that grief again and am hoping that I am now better prepared.

Me: I saw an advertisement on TV the other day about cremation versus burial. What do you reckon? You know what I mean? For both of us of course.

Anthony: It’s far too early to think about that.

Me: Okay, Ants.

Anthony: There’s something ….

Me: Is it to do with my exquisite face?

Anthony: I wouldn’t go that far.

Me: What?

Anthony: But it’s quite nice, I suppose.

Me: Harrumph!

 

 

 

 

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Dementia dialogues 7

Me: Why were you so horrible to me yesterday?

Anthony: Because you wouldn’t take me home to see Mum!

Me: I’m sorry, Ants – it’s just that ….

Anthony: And, by the way, Jules – Mum is not dead!

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Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.

 

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Auto/biographical risks

I was very fortunate to have once been a student of Elizabeth Jolley. She wrote fiction that was heavily laced with fact; she changed names to protect the guilty; she took risks.

The primary reason that I have hesitated over the years (decades actually!) to write what I think is a rather spectacular love story, is due to the yucky bits of the story – the betrayals, conflicts, mysteries and agonies in and amongst its success.

By writing increments of this “Once upon a time” story, I face the challenge of writing about how Anthony and I dealt with the disapproval of our relationship from both sides – from both families – and from well-meaning friends.

Over the last few weeks I have blogged outside the “Once upon a time” story, with tidbits of information about a recent event that traumatised me, and reminded me of some of the yucky stuff from the past. These posts, some now deleted, or edited, are, privately, an avenue into the complicated past of my relationship with Anthony.

When I say rather dramatic things like ‘spectacular love story’ I only mean that it was against all odds – a 41-year-old and an 18-year-old (the beginning), and now (the ending?), a nearly 57-year-old girl/woman sitting in a nursing home with her hands hugged by his nearly 80-year-old fingers.

My recent truthful tidbits have earned me the angst of one family member and, conversely, the support of many others.

I remember, years ago, Elizabeth Jolly speaking to me about one of my short stories:

EJ: This is far too painful, dear. Rewrite it.

38 Comments »

Another day with Anthony

After the fright of the other day when Ants was unconscious for so many hours (much longer than usual), I now realise that my being there every day is important. (Confession: I have been taking ‘days off’ here and there recently).

The first interesting thing about this is that, according to staff, relatives, and visitors, if I am not there, Anthony asks for me and is sometimes fretful.

The second interesting thing about this is the whole time warp thing: i.e. I rush in to see Ants on my way to getting the car serviced, seeing whether we have won lotto, buying chick starter etc. so it’s a very brief visit. And he always knows that I will be back soon, even when I don’t come back that day/night. Five minutes can equate to-and-fro with five hours – or vice versa.

The third interesting thing about this is Anthony’s daily mention of Ming. He never does this in a needy way; he is just always very curious and loves seeing photos of Ming, including Ming’s latest Halloween antics/costume at the restaurant where he works. These photos (as well as the photos of Ming on the walls of Anthony’s nursing home room) are always a buzz – “There he is!” Anthony will sometimes say.

When I told Ming about the frightening day, I cried because I was scared that we might lose Anthony suddenly (which, of course, we will). In telling Ming about my day with Anthony, I realised, and saw, how alike they are: generous, sensitive, gregarious, easy-going, beautiful.

Another day with Anthony…
… enhanced by the fact of Ming.

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Jigsawing

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!

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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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Changing

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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