jmgoyder

wings and things

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.

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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….

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…. 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!

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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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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 16

The carer who “loves” dementia!

by jmgoyder

Jodie Desilva works as a carer and supervisor at the nursing home where Anthony lives, her favourite area being the dementia cottage. She has such a gentle manner, and exudes such calm, that whenever I was working with her, I felt a sense of great peace. I noticed, too, that the residents were also affected in very positive ways by her contagious serenity.

On beginning her shift, Jodie will always distribute her latest acquisitions around the cottage: second-hand scarves, hand-bags, mirrors, and all sorts of colourful, miscellaneous objects. In doing so, she transforms the living areas – dining and television rooms, entrances and hallways, into a mosaic of colours, interesting objects, and cosy busyness. The ways she does this – so quickly and yet so unhurriedly (this is probably the definition of ‘efficiency’!) – is testament to her gentleness.

But it was the way Jodie related to the residents with dementia that most struck me. If A. wanted to know where her (deceased) husband was, Jodie would give her a hug and reassure her that he’d be back soon; if B. refused her dinner, Jodie would ask her what she wanted instead (for example, a sandwich); if C. started screaming “get the cops!” Jodie would humour her into a laugh.

It was during one of these laughing moments that Jodie looked at me and said, “I LOVE dementia!” Her compassionate giggle, her hand resting on the shoulder of one of the residents, her total ease in the company of so many people with dementia was/IS moving.

Jodie’s comment about loving dementia makes a hell of a lot of sense to me now. After all, in terms of Anthony’s encroaching Parkinson’s disease dementia, there isn’t much point in me hating it when we have both now accepted it. But to love it? To love dementia? That idea has taken me a bit longer to absorb. It certainly hasn’t been a problem for me to love Anthony of course, but to love his dementia?

Then all of a sudden it strikes me; I have been loving his dementia; I have been making his room more colourful; I have been laughing more with him; I have been coping better; I have been exuding my own sense of peace….

Thank you, Jodie Desilva, for your wisdom and your personal kindness to everyone you meet at the nursing home (and elsewhere I’m sure). I salute you.

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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:

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I am so proud of this Ming of mine.

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Sep 14

Keeping a record

by jmgoyder

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.IMG_4740

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.

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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 11

My hero

by jmgoyder

She doesn’t know she is my hero.
She works long shifts at the nursing home.
She always makes time to have a chat with Anthony and me.
She has been known to give Ming a hug!

On her days off, she makes beautifully soft comfort blankets for the residents in the dementia house.

On her days off, she collects, and organises various goods to sell in order to raise money for the nursing home. As a result, the last few boxes of stuff I was going to take to the Salvation Army shop will now be donated for this cause.

She doesn’t have to do any of this extra work.
She has her own family responsibilities, like we all do, and yet she
still
goes
the
extra
mile.

My hero, E.

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Sep 10

On becoming a gardening person….

by jmgoyder

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I am learning, in leaps and bounds, about gardening!

A couple of days ago, I bought some potting mix and put it into three ceramic pots I’d given Anthony for a Christmas present years ago.
Gardening people don’t see the point of empty pots, no matter how pretty; they tend to plant things in them.

So I planted the gifts given to me by the gardening group last Saturday – the strawberries in one pot, the spring onions in another, and the mint in the third pot. This proved to be a bit of a challenge because, even as a child, I hated having dirty hands. Nevertheless, I threw my cowardly hands into the dirt and found the experience strangely exhilarating.
Gardening people quite like being grubby.

Then, yesterday, for the first time in my life, I bought a hose and, in doing so, experienced a frisson of delight. Today I may embark on the adventure of attaching it to a tap.
Gardening people need to know where all the taps are.

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Becoming a gardening person is not without its challenges though. For example, I didn’t know I had some narcissus pseudonarcissus growing until one of the gardening group told me so. I thought they were just daffodils.
Gardening people are linguistically superior to non-gardening people.

I am also learning that, when a gardening person places into your hands what you think are two anaemic cow turds, you must not recoil but simply say thank you. Once you have said thank you, the gardening person will tell you that the anaemic cow turd things are actually dahlia bulbs.
Gardening people are always polite.

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