dementia | jmgoyder

The Land of Blah

by jmgoyder

For several days now I have been in and out of the Land of Blah – you know, that place where, even when you stub your toe badly, you can’t be bothered saying ‘ouch’. It’s a funny sort of place, this Land of Blah, but not in a way that makes anyone smile; smiling is kind of frowned on here because it depletes energy and you need energy to get out of the Land of Blah.

I never choose to visit the Land of Blah but sometimes I accidentally wake up there (nightmares can do this), or else I am sitting with Anthony in his room in the nursing home and I am transported into the surreality of his confusion so much so that his blank expression becomes mine.

Sometimes I meet people I know in the Land of Blah and it shocks me. ‘What are you doing here?’ I feel like asking them but of course I don’t because it is a place of such silent mystery and private misery – a paradoxical place of in-between.

I don’t like it in the Land of Blah so I usually manage to clamber out and up into my normal life. And this is what I see: a beautiful peacock family.

And the Land of Blah once again recedes into its own grey nothingness.

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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House of cards

by jmgoyder

We live in a very old house – part of it is over 100 years old and, ironically, it is that side of the house that is the most structurally sound. Other parts of the house have become problematic over the years – bricks crumbling on one side, the ceiling in the big bedroom breaking one day when a builder put his foot through it and nearly fell into the house when repairing some of the roof. Obviously these things have now been repaired (well, bandaged!)

On the weekend a few more things fell apart; the back veranda door fell right out if its grooves, onto an outside table (it has been threatening to do this for some time). Luckily, the table saved it from smashing into a million pieces of glass. Then its accompanying fly-screen door fell out of its grooves into the house (these two door have a very close relationship).

Then, as if all of the doors in the house were following some sort of evil ritual, the shower door in the bathroom also fell out of its hinges – well, sort of. You see, it was a sliding door that had stopped sliding, so, in order to get into the shower, you had to hold your breath and squeeze through a small gap. Yesterday, Ming became so annoyed with this that he took half of the door off and propped it against the remaining bit of the door. He didn’t prop it very well, however so, when I had to go to the loo in the middle of the night, I bumped into it and it fell into the shower recess. Thankfully, it didn’t smash and is now outside with the rest of the rebellious doors.

Today, the kitchen door is nearly off its hinges, the front fly-wire door doesn’t close unless you force it to, and the key to the glass front door won’t work properly (which means we often have to climb into the house through a window, although that won’t be necessary anymore since we now have an almost door-less house).

Ming has been trying to fix all of these things this morning and has done a great job and I am very proud of him for trying to do this kind of thing by himself when he has never been taught. I like the way he is figuring out how to fix things without anybody’s help and with very little nagging from me. He is doing jobs I used to watch Anthony do, and he is doing them willingly and cleverly.

I had a pretty grim weekend with all of the doors in my own house-of-cards breaking, or falling, but I guess that’s what has to happen before the ‘fix you’ thing can happen. Anthony always waited until things were totally broken before he would address the situation: doors, pumps, hoses, fences, vacuum cleaners, me.

My pompholyx was finally healed enough for me to visit Ants yesterday and, when he saw my scarred hands, he reached out and stroked my wrists with his cool fingers, and watched me carefully as I smiled through unshed tears of utter misery at being separated from him.

Me: I can’t even do the bloody dishes because I am not supposed to go anywhere near rubber gloves or detergent.
Ants: Well bring me home and I can do all of that for you!
Me: But Ants, it’s nearly 3pm – it’s too late to bring you home now and, I hate to say this, but you are too sick with the PD to help me – you will only make it all harder.
Ants: (Silence)
Me: Oh great, so have I hurt your feelings now?
Ants: No.
Me: As soon as my hands are better I will pick you up to go out – is that okay?
Ants: Has to be, doesn’t it.

Then, surprisingly mobile for that time of day, Ants walked me out to the parking lot and waved goodbye. I stopped at the end of the driveway to the nursing home to check in the rear vision mirror that he was going back inside the nursing home. I watched as he slowly turned the walker around and limped back to the nursing home doors which opened automatically. And, when he disappeared through those doors, I tried not to think about anything except how well those doors worked!

Oh and the ducklings keep getting through the faulty door of their chookpen – argh. In one more week they will be too big to get out until I open the gate (which hopefully won’t break before then!)

The best thing about a house of cards is that it is so interesting!

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Daybreak, heartbreak and other breaks

by jmgoyder

Yesterday, Ming went to see Anthony at the nursing home at around noon because, even though I didn’t see Ants on the weekend (because I was having a bit of a break with my friends at a nearby chalet), on Monday my stupid hands had become a bit infected and very sore and I felt unable to make the journey into town. But by 4pm I couldn’t stand not seeing Ants so I drove into the nursing home and arrived in Anthony’s room at 5pm.

Ming had already told him, earlier in the day, that I wouldn’t be in, so he was surprised and absolutely overjoyed. “My beautiful, beautiful girl,” he kept repeating. His dinner arrived and we shared a beer and I helped him with food, phone and television and then I had to go home again. I was probably in there a bit over an hour and, by the time I left, Ants was a bit confused as he always is in the evenings now. But he was happy! And he didn’t mind that I was going home at all. For me, the relief that he could say goodbye to me happily was so wonderful that I drove home on a bit of a high.

But every day is different of course. So today, when Ming and I visited for a couple of hours in the early afternoon, Anthony became so sad when we had to go (including begging us to take him with us) that it broke my heart all over again because he even articulated it: “When you both leave, I get so upset.”

Ming is better at handling this than I am. “Dad – pull yourself together! We’ll see you tomorrow!” For me it is much more difficult to extricate myself from Anthony’s heartbreak so I tend to prolong goodbyes with so many kisses and hugs that Ming nearly vomits!

I guess, because I don’t have a routine of what time I visit Ants (except that it is nearly every day), and the fact that I am not bringing him home so much, because he is too heavy now and quite often unable to move or walk without help, every single day has become an unpredictable journey of fear. The other wives of the other men Anthony’s age all have a routine; they visit their husbands at the same time every day, but these wives are in their 70s or 80s and live nearby.

This is not me complaining or asking for advice; it’s more of an attempt to give some insight into the unpredictable nature of PDD (Parkinson’s Disease Dementia) and how one day, no matter what time of day, Ants might say, “Okay, see you tomorrow, Jules” and the next day it might be “Please don’t leave me, Jules!” I can never know what to expect in any way at all – again, no matter what time of day, although evenings are worse – lucidity, confusion, joy, fear, confusion, love, hope, conversation, confusion, helplessness, uncertainty, disorientation, confusion, misery ….

To grasp my husband’s big, old hands with my younger infected hands today was very painful because he had a grip I haven’t felt for a long time – he held on tightly until I said “You’re hurting my hands, Ants!” and he immediately released them. It was worth it though, because he lost his grip a couple of years ago (PD).

On a lighter note, I am having a break from cooking tea for Ming because, for the first time ever, he is doing it all by himself – yay!!!!!!!!!!!!!!

And the ducklings took a break from Godfrey (when he wasn’t looking!) to take bread out of my hands.

It is quite possible, of course, that, due to recent circumstances, I have either had, or am having, a nervous breakdown. That would be a very convenient excuse for not answering the phone, not opening a month’s worth of mail, not keeping up with blogs, and blogging in a way that is almost ridiculously high and low – sorry!

Oh, Home and Away is on in 5 minutes – now that is a break from reality – haha!

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Duckling update

by jmgoyder

Well the three ducklings have grown so quickly that they are almost too big to squeeze through the fence of the yard I put the gang in at night. They free range with their ‘minders’ all day.

Here’s a picture of Seli and Godfrey guarding the Twins.

And here’s one of Ola watching over a sleeping Michael Jackson (the dancing duckling).

I took a whole lot of better photos of all of them but had to delete these because Ming’s smashed ute (truck) was in the background. The gang + ducklings tend to hang out underneath it because it is near the pond. We have covered the smashed-in front of the ute with a blanket so that visitors, especially family, won’t be upset if they see it. The rest of the ute looks normal, with the tray intact. I wish we could get rid of it but we are stuck with it in the back yard for now until we try again to claim some insurance. Every morning and every evening, when I let the gang out, or put them into the yard, I have to walk past the ute.

There is also a clear view of the ute from the kitchen window, a constant reminder of the accident and everything since. And when I frolic in the dirt, and offer prayers to the sky, and watch the pea-chicks climb the avocado tree, or cry until my body is cramped like a dead leaf, I am always right next to the ute.

Ming brought Ants home for the afternoon yesterday and I (rather dramatically) threw myself into his chest and soaked him with some of these endless, futile, enormous tears. He held me and said nice things to me and then asked me about the ducklings.

“When are we eating them?” he asked.

I stopped crying immediately. “What the hell are you talking about? We are not eating them, Ants!”

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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A disco duckling, a haughty gander, and a very depressed turkey

by jmgoyder

The little duckling in the centre of this photo is distinct from the other two because s/he is smaller and paler. But, after what I witnessed the other evening, I have decided to call this duckling Michael Jackson.

I had put the gang, including ducklings, into their yard for the night, then turned the hose on the avocado tree which is right behind Ming’s shed where he now lives. As soon as I turned the hose on, Michael Jackson squeezed through the fence and began swimming in the growing puddle. The other two ducklings (the ‘Twins’ because they are identical) followed Michael Jackson to the puddle, so I had to let Godfrey out again in order to herd them back in. He gave me his usual ‘look’ – a combination of ferocity and disdain.

At that very moment, Ming began to play his guitar very loudly and the birds and I got a bit of a fright. Well, little Michael Jackson went crazy and I nearly ran to Ming’s shed to tell him to stop the noise until I realized that the duckling was actually dancing! It ran around in circles, twirled around in the puddle of water, threw itself at the twins and frolicked madly. When Ming stopped playing his guitar for a few moments, the duckling just stood still, as if waiting, then, when Ming resumed, the whole happy dance thing happened again. It’s one of the funniest things I have ever seen and I wish I had it on video.

Godfrey watched fondly, as I did, then I turned the hose off and he herded Michael Jackson and the twins back into the yard.

The only lonely one now is Baby Turkey because we lost Bubble, his main companion months ago. Baby Turkey now prefers to be in his own yard, away from the happiness of the geese and ducks. He sleeps a lot but when he gets up he still looks so sad. I have decided to try and find him a mate, a female turkey, so that he will be happy again and am hoping that the place where I got the ducklings will have one to spare. They have turkey chicks so maybe they will sell me one of the mothers.

Baby Turkey’s loneliness is a constant reminder of Anthony’s. I have not been allowed into the nursing home for a few days because I have a chest infection, so Ming and my mother have been in several times and I am relying on phone chats with Ants. He doesn’t understand that I am sick; he just seems to think I am neglecting him and I got a phone-call the other morning from one of the nurses, to say he didn’t want to get out of bed. I ended up speaking to him but he was quite incoherent. This is the first time I have known him to be like this in the morning because this usually happens in the evening.

I don’t know why the quote ‘This is how it is’ resonates so powerfully for me; after all, it is a statement of the obvious. I like it though because it beckons some sort of response, it curls around a sort of question, and it invites a sort of acceptance.

Sort of!

Godfrey and I have agreed to disagree, and I still love him.

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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How Queenie puts her peachicks to bed

by jmgoyder

This evening I sat outside from around 5 – 7pm as Queenie began the ritual of taking her kids to bed up in the avocado tree. First, she wandered around with them following her, digging into the ground with her big feet to give the chicks insects, showing them how to drink from a shallow bowl I’d put near the avocado tree, finding the wheat always there for all of the birds. At first I was a bit alarmed to find the little family out of the pen as early as 5pm but I guess they are now a bit beyond the pen and like to wander around the yard and back paddock freely. King (obviously the dad) stayed with them for ages, protectively.

I have maintained a respectful distance but they all come close to me anyway; they trust me and seem to rather like the flash of the camera. The photos I have put here show their long, but enjoyable, journey to bed but this is the first time I have seen the finale. I was amazed to see how the two peachicks can actually fly quite high now from branch to branch, up and up, and until they reach their mother. Queenie clucks until they get to her.

Of course the two peachicks are still extremely vulnerable; they might be taken by crows, they might drown in the pond (now that they are out of the yards), but I am hopeful that wise Queenie will prevent these possible catastrophes and King is right by her side for much of the time.

In watching this beautiful bedtime ritual, I remembered how much the birds helped me cope with the misery of Anthony’s illness, the nursing home process, Ming’s spinal operation and so many other things. Now the birds are helping me to cope with a whole new set of miseries which I blogged about yesterday, then trashed because it was all too sad. In trashing the post, I guess I also trashed the comments and I apologize for this and am grateful for those comments. Now I think the best thing is to get back to these beautiful birds for awhile.

As usual Gutsy9 became really jealous and insisted that I took her photo too.

Tonight, I would love to be one of Queenie’s peachicks, up high in the avocado tree, under her gentle wings.

But I am a bit too big!

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Anthony’s 78th birthday yesterday

by jmgoyder

The photos are courtesy of my ma, Meg, and nieces, Jane and Ashtyn. It was all fairly low key because of Anthony’s inability to cope in a crowd (with Parkinson’s disease, it is very difficult to focus on more than one thing).

Ants, Ming and I spoiled each other with birthday gifts yesterday; mine was a ridiculous amount of cheese; Ming’s was a Scottish kilt; and Anthony’s was a shirt that he was not enthralled with. And the sprinkling of friends and relatives was perfect. Jane, as usual, gave us all presents, Ashtyn took a million photos and my ma did the tea and coffee stuff. Geoff, a wonderful guy who used to work here, brought a cake which was great because Julie (not me, my sil) was complaining about the lack of one haha!

Ming took Ants back to the nursing home at around 4.30pm because he was exhausted. I would have invited more people but it would have been too hard. I did invite a few more but they couldn’t come which was actually a relief because I couldn’t remember who I had invited! Plus Ming and I wanted to take Ants over the road to have a drink with his brother but, by 4pmish, we could see this would be impossible. It took three of us to even get Ants into the car to go back to the nursing home, but I didn’t cry for a change.

Small parties are the best! Happy birthday, Ants.

PS. Would anyone like some cheese?

Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Surreal

by jmgoyder

I saw Anthony this afternoon at the nursing home, and I showed him my blistered, peeling, bleeding hands and feet and told him that I had seen a doctor who had prescribed cortisone cream.

The doctor was more fascinated than concerned, when I told him I thought I had ‘pompholyx’. So, while I scratched away at my itchy hands and feet, he looked it up and confirmed my self-diagnosis. I just wish he hadn’t insisted on looking at my always-dirty-from-the-chook-yard feet – oh well.

Anyway, as I was telling Anthony all of this in my usual dramatic way, he pointed to his own hands and said he had the same thing. Well of course he didn’t have the same thing – it was just skin cancers on his old hands but I appreciated his empathy.

But then he whispered to me that it might be Parkinson’s disease and this is how our conversation unfolded:

Anthony: There is a doctor here who knows about it.
Me: About what?
Anthony: Your hands, this – he has black hair, young guy.
Me: Is he the doctor replacing the one on holidays?
Anthony: I don’t know, but don’t trust him, Jules.
Me: Why?
Anthony: He wants all of the Parkinson’s people in an experiment.
Me: Oh Ants it’s probably just a student doing a survey – is he asking you questions?
Anthony: Yes, personal. Don’t tell him anything, Jules.
Me: Ants, do you think you might be imagining or hallucinating some of this?
Anthony: I don’t know, maybe – oh and the family came this morning to take this place over.
Me: The Goyders?
Anthony: Yes – there’s a lot of money – be careful.
Me: I’ll check it out if you check out that whole doctor thing.
Anthony: One of them has red hair.
Me: That’s the priest isn’t it?
Anthony: No, the doctor – another one….
Me: I have to go now, Ants but I’ll be back tomorrow.
Anthony: Why do you have to go?
Me: It’s getting late, I have to get groceries, go to the chemist and look after Mingy.
Anthony: But where do you live now?
Me: I live at Bythorne, silly, on the farm!
Anthony: Do I still have a corner room there?
Me: Yes, but I can’t look after you overnight now because you are too heavy.
Anthony: But it’s still my farm.
Me: Your beautiful, beautiful farm, Ants, and Ming and I are taking care of it.

After this conversation, we hugged and kissed and I came home to Anthony’s resounding absence.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Sundown

by jmgoyder

Ever since the peachicks entered our lives, over a week ago, everybird has become very attentive at sundown, including this young couple (the peahen is the second one to finally return although without chicks).

Prince is also quite interested in how Queenie gets the chicks to bed (notice how he has lost all of his long tail feathers – all the peacocks have now).

Gutsy9 is a bit jealous and is always right next to me. If I crouch down, she offers her neck to be stroked.

While Queenie is stirring the chicks up, preparing them for their bedtime transition to the avocado tree, I put the geese, duck and turkey into their yard for the night. I have been trying to flood their pen in order to create a kind of pond for them and it is working.

Queenie and the peachicks take ages to get ready for bed.

So I take a photo of the fig tree while I wait.

The younger peahen flies into the yard to encourage Queenie.

King (undoubtedly the father) also flies into the yard and takes a protective stance.

And then the magic begins. The bigger chick actually leads the way!

Queenie has to help the smaller chick.

But it comes back down again to say goodnight to me.

This is around the same time (7.30-8pm) that Anthony often suffers ‘Sundowner syndrome’ so, once I leave the birds and go into the house, I always ring the nursing home to say goodnight to him. As he almost never answers the phone himself I usually have to get the nurse-in-charge to enable a conversation. Lately Ants has been okay, delusional but not upset. He often thinks he is either at boarding school, a hospital, a party, or a pub.

I tell him about the birds, and say goodnight, with a sense of tentative peace, which is probably how Queenie feels at the top of that avocado tree (can you spot her?)

Animal Family Friendship Happiness LOVE STORY Wings

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Our marriage

by jmgoyder

For better or worse ….

When Anthony and I were married, we agreed to the usual vows including ‘for better or worse’. At the time, I was unconcerned that he was 23 years older. He, on the other hand, was very concerned, and worried that I might end up looking after an old man. At the time, we both laughed this off because we didn’t anticipate illness.

It seems unfair that my beautiful Anthony was inflicted with kidney cancer, diabetes, liver disease, prostate cancer, then (by far the worst), Parkinson’s disease – all within the first ten years of our marriage. For Ming to never have known this gorgeous, energetic, life-of-the-party person I fell in love with is a bit heartbreaking for me. I can only show Ming photos of when Anthony cuddled him, lifted him over fences to feed calves, taught him how to wash the car, strollered him into the dairy, slept with him crooked inside his shoulder space, toilet-trained him in about two hours when I was away at a conference, loved him with the energy of a new father, rejoiced in every single breath, sound, word, movement that Ming made.

Now, with the encroaching dementia that comes with advanced Parkinson’s disease, and Anthony’s deterioration in mobility, his wild hallucinations that he has been kidnapped, his outings with me fraught with bizarre stories of what I know couldn’t possibly have happened (eg. removal of a foetus from Ants), I sometimes cry.

Tonight, the nurse enabled a phone-call to Ants and, as soon as I heard his voice (usually it is soft now, but tonight it was loud and confident), my pent up tears broke.

Anthony: Jules -please don’t cry!

Me: It’s all just so hard, Ants – sorry.

Anthony: Jules, it is going to be okay.

In sickness and in health ….

The term ‘marriage’ implies commitment, loyalty, empathy, forgiveness, flexibility, and the ability to carry on, no matter what. In this sense, I am actually ‘married’ to a lot of people and this makes me feel on top of the world!

Family Grief Happiness LOVE STORY Parkinson's disease

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jmgoyder

wings and things

The Land of Blah

House of cards

Daybreak, heartbreak and other breaks

Duckling update

A disco duckling, a haughty gander, and a very depressed turkey

How Queenie puts her peachicks to bed

Anthony’s 78th birthday yesterday

Surreal

Sundown

Our marriage

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