jmgoyder

wings and things

Cramps

I have, from time to time over the years, had leg cramps during the night and I must have inherited this from my grandmother because I remember that, when we all went to the beach, she wouldn’t go into deep water in case she got a cramp. If your legs cramp while you are swimming in deep water, you can easily drown.

If you have never had a leg cramp in the night, you are lucky, but, if you have, you will know that, in order to alleviate the pain, you have to jump out of bed and walk around until it goes away. You take some magnesium, or a bit of salt, and you are okay.

One of Anthony’s medications has a cramp side-effect. He told me the other day, with a bit of a chuckle, because he remembered my leaping out of bed to walk/run the cramp away. It used to make us both laugh because my antics were rather slapstick.

I still get the leg cramps at night and now, so does Anthony. But the difference is that he cannot leap out of his bed and I wonder how many other elderly people in nursing homes across the world, and over time, have experienced the excruciating pain of leg cramps and had to suffer silently.

Luckily, my loud, vociferous Anthony has begun to ring the bell for the nurses. A lot! Good on him.

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Pleasure versus pain

How interesting! I just sussed out the recent statistics for this blog (something I don’t usually do – really!) and found that pain is much more popular than pleasure. I don’t have these two pps as categories in this blog, but it is obvious that more people want to read about sad stuff than happy stuff.

Why?

I do understand this because, when I was teaching Creative Writing at the local university, I used to talk to the students about this writing conundrum (this was before my husband got so sick), and this is what they came up with at the time:

  • when you read about other shit, yours doesn’t seem so bad;
  • happy stories are dead boring;
  • yes, but tragedy always has comedy too;
  • why can’t I just gutspill onto the page?
  • because Julie said you need to restrain yourself a bit more
  • what a load of crap!
  • one painful sentence is worth it
  • fuck pleasure – let”s do this!

I miss those students and their wisdoms.

And I would like to know why pain is so pleasurable – over to you…..

Why?

Photo courtesy of Shaam Burley

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Anti-heroism and honesty

My post about Anthony coming home yesterday elicited a few encouraging comments for which I am appreciative, but also humbled, because I am not this hero I have somehow cast myself as, so I need to remedy that impression. No, I am much more the anti-hero, regardless of my good intentions. So this post is about honesty.

When Anthony comes home and wants to be the workaholic he once was, and draws attention to the things Son and I haven’t kept up with (lawns, garden, sweeping pathways, cleaning out the washhouse, washing the car), I become bitchy and resentful and say things like, “I’m doing my best. Why do you always have to find fault?” and sometimes I add a few expletives for good measure.

When Anthony comes home and can’t walk properly, I sometimes hurry him along and then (because he is heavy) thrust him into his armchair in a way that is not gentle and he says, “Why do you have to be so rough?” and I retort, “It’s the only way I can get you into the chair!” and he says, “Well, do you have to throw me?” and I snap, “Yes!” Sometimes we both then collapse into laughter so it’s okay, but sometimes we don’t.

When Anthony comes home and is in the armchair, asleep or semi-conscious, I sneak away and do other things because if he doesn’t want to watch Black Books or look at my blog or do anything except slump, I avoid him – yes I avoid him.

When Anthony comes home, I count the hours before I can take him back to the nursing lodge because he has somehow transmogrified into a job, rather than a person who I love and, even though this is difficult to admit, I love him more at a distance (both geographical and temporal). In other words, I love him the way he was and I find it difficult now to reconjure that.

He and I talk about these things which I realize probably seems strange, but he has always been my mentor, my confidante, my best friend so sometimes I tell him about how difficult he is as if he is another person, and he gives me advice.

“You will always be my hero,” I say, “but now Parkinson’s has got you.”

“I can get better,” he always says.

“No you can’t,” I say.

“But I love you,” he says.

And, just as I leave him at the nursing lodge, I say the words too – “I love you” – then I drive back home, sometimes teary, sometimes nostalgic, but always relieved, guiltily relieved to hand him over – my hero.

The picture below is of our two male golden pheasants who nearly fought to the death over a female and the one on the right, Phoenix 1, won the battle and now Phoenix 2 has been banished. I don’t know why, but it seems an appropriate picture for this post.

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How to unfold a day

Anthony was home for most of today and, for a couple of hours, he was okay and mobile and trying to do some jobs, and he and Son got the Aga lit. Eventually! Teenagers (Son) and geriatrics (Husband/Anthony) don’t always agree on these things. And, it struck me, as I withdrew from their Aga-lighting tiff, how amazing that my two ‘boys’ – this father and son who look exactly like each other but who have an age difference of nearly 60 years – can communicate at all.

After a lunch of doner kebabs, which Anthony used to love but couldn’t manage because his hands don’t work so well any more, everything went a bit downhill and Son withdrew as Anthony became more and more crippled up. His morning drugs for Parkinson’s seem to work well, but by early afternoon it became a predictable downhill slide and by 4.30pm he was more than ready to go back to the nursing lodge.

None of the things I had planned eventuated. I wanted to show Anthony the latest blogposts, which he usually loves, but he said he was too busy for that even though he was just sitting in the armchair near me, drinking a cup of tea. He wanted to sweep some of the bird crap away from the back door, even though Son and I had already done this, so I walked him outside very slowly with his walking stick, saying ‘1,2,3’ which usually gets his legs working. Eventually I put the straw broom in his hands and told him that if he fell over I would kill him, and left him out there to try. And while I watched through the window, he did a little bit of a sweep and then froze, head down, unable to move; this is Parkinson’s.

On the way back to the nursing lodge, Anthony was a bit incoherent and seemed to be having another ‘turn’ but then he suddenly said, “Jules, when you bring me home tomorrow, can’t I stay the night?” and I had to, once again, say it was too hard, he was too heavy etc. He accepted this and my guts twirled with how horribly humiliating for this man who used to be such a macho machine to have to ask me if he could sleep in his own home.

So, tonight, having rung Anthony to say goodnight, and having fed Son who is now milking cows again for the beautiful neighbours, I am unpleating the day and wondering if I could have done it better, wondering if I should be crying, wondering and wondering and wondering….

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Anthony is coming home for the day.

My husband, Anthony, is coming home for the day. I will pick him up from the nursing lodge in about two hours and bring him back to the farm. He is determined to help us do some jobs around the place, to relight the Aga and to get a fire going in the fireplace. These jobs will take until lunchtime and I am going to make one of his simple favourites – scrambled egg with chopped tomato. After lunch I predict he will have one of those weird ‘turns’ he has at noon but this time I will not panic or get the ambulance – I will just wait it out and let him sleep for awhile, even though it isn’t really sleeping; it’s more of a going almost unconscious thing which one doctor describes as a ‘brain freeze’ typical of Anthony’s type of Parkinson’s Disease.

Then we will probably all watch something funny on television (Anthony’s favourite series is Black Books), have afternoon tea while I show him the blog, then I will take him back before 5.30pm when dinner is served at the nursing lodge. By this time (I know from experience) Anthony will be very crippled and it will take both Son and me to get him to the car and Son’s patience will have run out. He is a wonderful teenager but, having shared the care of Anthony over the years previous to admission to the nursing lodge, Son has had enough and I completely understand this, so I will not make him accompany us on the drive back.

On return to the nursing lodge I may have to fetch a wheelchair. We will be greeted by the beautiful, friendly staff and I will settle Anthony back into his room, stay for awhile and try to jolly him out of his sadness at not being able to stay the night at home. Then I will leave and try very hard not to cry on the way home again. Once back at the farm I will feed the birds and put them away for the night, then I will go into the house where Son will give me a bearhug.

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His name is Anthony

Until now, I have referred to my husband as “Husband” in this blog because I wanted to keep things a bit anonymous and private. But today, after two visits to the nursing lodge, and one little drive with Son, I realized that in not naming Husband – who supports this blog and me, who wants desperately to come home and be ‘us’ again – I might have dishonoured him.

His name is Anthony and he is the best Anthony you will ever meet.

His name is Anthony and he is the best husband and father Son and I could ever want.

His name is Anthony and he has battled kidney cancer, prostate cancer, diabetes, spinal problems and now – the worst disease of all, Parkinson’s disease – all with a huge grin and the kind of resilience I will never have. His sorrow at being in the nursing lodge is a daily grief for all of us.

Anthony.

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Engagement!

Tricked you!

This is a photo of Son and his great friend, Z, at one of last year’s school balls. Z. said it would be okay to put it in my blog.

Note: Son said he doesn’t want to get married until he is 57 because that is the age Husband married me – ha! I think Z and I would agree that Son can be a bit too reticent.

Z is like a bird of paradise, a breath of fresh, new air.

Son is like an avocado tree.

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Dancing days

It’s Sunday here and in a couple of hours I will go into the nursing lodge to have lunch with Husband. I haven’t seen him for a few days because I have had the flu, but we have, as usual, spoken on the phone several times a day. He has missed me terribly but has coped. I haven’t missed him as much, which seems a terrible thing to say but there you are – I’ve said it.

We have talked about this disequilibrium of the missing-you thing.

Husband: I miss you now, I miss you all the time.

Me: I miss you then, I miss the way it was when you were well.

Husband: But I can be the way I was. I’m getting better.

Me: It’s not your fault – it’s the bloody Parkinson’s. You’re not getting better, you’re getting worse – that’s why you’re here so you get proper nursing care.

Husband: I don’t want nursing care. I want you.

Me: But I can’t lift you anymore, and I can’t make you walk, and I can’t manage you during the nights.

Husband: So I am never coming home for the night again?

Me: I don’t know. What’s wrong with coming home for the days?

Husband: It isn’t enough.

Me: I know.

Husband: And where’s the kid?

Me: At another party.

Husband: Just like I used to be.

Me: Just like you used to be.

Now I realize this all sounds very poignant and sad, but it always (well, almost always) ends up in a laugh about the dancing days.

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Wrong way. Go back.

In Western Australia we have big signs wherever roadworks are being done in case people go the wrong way. This can be useful, but it can also be a bit confusing.

It’s a little bit like that with blogging because you get really curious to go down a certain blog path, you like what you are reading/seeing, but you are also uncertain of where exactly you are and sometimes the historical context of where you are, in that person’s blog, takes quite a bit of time, quite a bit of deciphering.

With my own blog, Wings and things, it’s obviously the same experience for new readers or followers because, of course, the latest post is always the most recent and, unless people  have time to go back, they might not ‘get it’ that there are two different-but-same stories running parallel. The Love story is about the past but everything else is about the present.

As many of you already know, my husband has chronic Parkinson’s disease and terminal prostate cancer and is now in a nursing lodge close by. Our 18-year-old son recently had major spinal surgery. And me – I love birds!

I can’t keep up with the many blogs I am interested in, no matter how hard I try, but one thing I like to do is to go back and read the very beginnings of those blogs which is what I hope people will do with mine. It’s not that there is a wrong or a right way necessarily, but going back can be fantastic!

Oh yeah, and if you go back, you will find that I don’t usually do 4 posts in the day. I cheated today with the pics – hehe!

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Nostalgia

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