jmgoyder

wings and things

The Writing Room

After a few delays, it is finally happening and tomorrow I will take ownership of a brand new space which I will call ‘The Writing Room’ rather than ‘The Office’ where I am sitting now (end of our back veranda, small, musty, messy, windowless, dark, cluttered, no longer conducive to writing that isn’t tainted with smidgens of gloom).

Ming is even more excited than I am about this transition and the naming of the room. He even read my post about ‘The Writing Room’ and praised it (and he hardly ever reads my blog!). Today, he and I went into town to find a table/desk for my new room since the one in here is old and horrible and is where, from now on, I will place all of the bills and other dreaded paperwork.

So we found the perfect table, discounted and easy to put together and, after a bit of trouble with lifting/trolleying it into the house (Ming’s back, my hands) we got it in and he assembled it and here it is!

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Tomorrow I will move my chair and computery stuff in and begin to write again in earnest. It has been too long since I had anything published, apart from this blog of course, so I am relishing the idea of a new beginning in ‘The Writing Room.’

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An apology to my hands

I have always taken my hands for granted. Not only that, I didn’t like them and I often said so to my friends. I hated my short, stubby fingers, peeling fingernails, freckle-wrinkles. I even did the fake-fingernail thing for awhile, the expensive hand moisturizer-guaranteed-to-remove-freckles-and-age-spots thing. Was I crazy?

It is now two months since this weird disease attacked my hands and now my left foot. I have been back and forth to doctors and have been on steroids, antibiotics and, as of yesterday, anti-fungal and anti-histamine stuff. Pompholyx: interesting word and no definite cure.

How was I to know that a seemingly simple little finger-blister thing, that occurred two months ago, would turn into a recurring nightmare over and over and over again? I can’t do the dishes, open a window or anything else that requires my hands (thank God I can still type). My hands and one foot are bleeding, scabby, blistering, itchy and, therefore, useless!

So please, hands, I’m sorry if I insulted you. In retrospect, I realize you were beautiful, wonderful hands, so please come back so we can be a team again. I never knew how much I needed you until now.

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Things that go bump in the night

You know the other night when Ming and I had that argument and he fled from my wrath to his shed? Well, the argument was about the fact that even though he moved into his shed months ago, he still hadn’t cleared a lot of his stuff out of his bedroom in the house. I had been extreeeeeeeemely patient about his procrastination until that night, when I snapped, the reason being that this bedroom was to become my new office so that I can get out of this little back veranda hovel that the mice like to invade (they like paper).

After Ming stomped off to his shed, muttering things like “You always make me feel so bad”, and me shouting, “Just clear your stuff out tomorrow or I will chuck it all out the front door!” he and I reconciled via texts and he promised to do the job the next day.

Well he kept his promise because at exactly midnight I was awoken by some very noisy activity in his ex-bedroom (which is adjacent to mine). I lay there grinning like a hyena listening to what I realized was Ming moving his stuff out of that room. This went on for about an hour and then all was quiet again, I tiptoed into the next room to find it totally empty! Elation! Then, on the hall table, Ming had left a long list of things he would do when the sun came up. I grinned again and went back to bed.

It wasn’t until after breakfast, that I discovered that he had simply moved all of his stuff into the living room! But it’s okay now – all of it is in his shed which now resembles the chaos of a crime scene (what happened to my neat and tidy boy?)

But my room is ready for me now and I am so excited! It is a room with lots of history because it used to be Anthony’s mother’s room, then it was the office where I wrote my PhD, then it was Ming’s childhood bedroom. We have now taken the huge musk-pink carpet mat out (over 40 years old) to reveal the beautiful jarrah floorboards, and Ming has vacuumed from corner to corner and cleaned the windows inside and out, and we have arranged for a handyman to fix the cracks and holes in the wall and ceiling. Then we will get my painter friend in to paint it crimson (just joking – white!)

It is a big, light-filled room with a view to the front paddock from the north-facing windows. That’s where I will put my desk, computer etc. tomorrow!

The interesting thing about this little adventure is that, for me, it feels like I will have my own beautiful space in this house for the first time in 20 years. It’s not that I felt deprived but, having married an older man and moved into an already established household, I have never quite felt a sense of ownership and, in terms of making any sort of mark, I have done very little in the way of interior decorating, renovating or changing anything – so much so that when Anthony’s relatives drop in they feel they have stepped back in time!

I have decided to call this old/new room my writing room. A new beginning. It will be wonderful to move out of the hovel of an office I am in now where things go bump in the night constantly, especially in the ceiling where rodents, goannas and possibly snakes have sprinting competitions.

Ah, the joy of change!

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Tomorrow is always waiting for you.

Today was pretty awful and was made worse by a mother/son argument that escalated into recriminations, guilt, and ‘walk away’ tactics. To some extent, this worked but Ming and I were still so miserable – he in his shed and me in the house. So we began texting each other and have now established that I am the boss and he is the slave and he has even called me ‘Commander’; this is a good move.

Oh the joy of tomorrow! Of course tomorrow brings a fair few uncertainties but it mostly brings the excitement of anticipation, adventure and something new and fresh … and a new Ming, a new me and, maybe, a new Anthony!

Tomorrow is a gift.

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Guilt

I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.

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A conversation with dementia

I realize that the title of this post sounds odd but sometimes, in my conversations with Anthony, it is as if I am talking to two people: 1. Anthony-familiar (Ants); and 2. Anthony-with-dementia (AD). Here is a rendition of today’s conversation in the nursing home.

Ants: When did you get here?
Me: Right this minute.
Ants: Where did you come from?
Me: Home.

AD: Ming and I got all of those calves rounded up and into the paddock in front of the house. They are all in good condition.
Me: Oh! When did you do this?
AD: Yesterday, after you left. We also fixed the fence.
Me: That’s fantastic – thank you.
AD: You don’t need to thank me – it’s my job.
Me: Yes, but it’s a relief to know all of the calves are okay and the fence is finally fixed. I was a bit worried.
AD: Ming is a good worker.
Me: Well you and Ming are a great team. It’s wonderful that you are teaching him how to do these things because I wouldn’t have a clue.
AD: We just need to fix up the other boundary fence now [trying to get up out of his chair]
Me: Well Ming isn’t here now so can we wait until tomorrow when you come home?
AD: Okay.

Ants: Bloody rotten about Ming’s back.
Me: Well your back isn’t the best but look how well you coped.
Ants: I think his is worse. He could have done anything if he didn’t have that back.
Me: We just have to accept it now, Ants – Ming has.

AD: I’m still going to need his help though, on the farm.
Me: Of course!
Ants: Tomorrow?
Me: Yes.

Tomorrow is Sunday so I will be picking Ants up around 10.30am to come home for the day, and Ming will take him back to the nursing home in the afternoon. Ants has requested smoked salmon and avocado sandwiches so that is easily done.

I would be lying if I said I am looking forward to tomorrow because, no matter how much I want Ants home, and no matter how much he will love being home, it is going to be an extremely difficult day for Ming and me. There will be a lot of lifting, toiletting, confusion, frustration, barely restrained angst (Ming), and barely restrained sorrow (me). By 3pm Anthony will begin to falter and by 4pm he will be unable to walk at all so I will have to get Ming to take him back to the nursing home at 3pm and Anthony will get upset.

On the other hand, perhaps I should just alter my thinking a bit. We will have four hours together, the sandwiches will be delicious and we will give Anthony a million hugs. In fact, I reckon the whole hug thing is underrated because, during today’s conversation, I decided to give Ants a hug every time it got a bit too confusing for me and his big/small arms around me were much more powerful than any words.

I will just have to tell Ming to go easy on his habit of hugging Anthony rather ferociously because it scares the hell out of Ants!

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Dementia and bewilderment

Yesterday afternoon Ming and I visited Anthony at the nursing home in the late afternoon. I had blue cheese, crackers, olives, pate, pistachio nuts and ripe plums. We had a bit of a feast together and everything seemed okayish except that Ants was quite confused (which is normal after 4pm).

Then, when we went to leave, I kissed and hugged Ants and told him I loved him but his face was stony. Ming lingered a little longer with Ants and told me later that Anthony had said, “I don’t know why I love her any more.”

Of course I was very hurt to be told this but I explained to Ming that Anthony has these extremely lucid moments in the late afternoon (in amongst the confusion of not quite knowing where he is, temporally and geographically) where he feels/KNOWS he has been abandoned.

“Who will help me get to bed?” Anthony had asked me earlier.

“Where am I?”

“Will you tell the somebodies that I am here?”

“But where are you living?”

I am much more patient with Anthony’s confusion than Ming is – of course – and Ming finds it difficult to match this very sick, old man with the guy I fell in love with all of those years ago. Telling him stories about the way his dad used to be helps a little, but not much, not any more. Stories about Anthony’s robust energy, laughter and farming prowess fall short for Ming because he has no memory of the Anthony-before-illness. None.

Sometimes I wish I could give Ming my own memories of Anthony but I can’t.

And yet, when I see Ming talking to anyone and everyone, and being the life of the party, and taking over various responsibilities on this farm, I see Anthony all over again – the way he was – and his Ming clone buoys me up!

Anthony’s bewilderment is mine too and it is very hard to realize now that he thinks I have abandoned him. “I don’t know why I love her any more.”

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Go to bed!

They go to bed (in their yard) but then they come back out again, and they do it over an over again – argh! Ming was never this difficult when he was a baby – mmmm. The problem is that they hear my voice and assume I have bread or lettuce (which I don’t always have). Freckle, Misha and Michael Jackson seem to want to eat my feet off. Funny – yes, scary, yes! Okay, I am going out now to put them to bed and, if you never hear from me again, it will be due to a duck drama! Oh and now Baby Turkey is stuck on the wrong side of the fence – great!

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When the carer gets sick

It is now a few weeks since I was first afflicted with pompholyx on my hands and I have now seen three doctors (well, four, if I count Dr Google) and I now have all the antibiotics, steroids and ointments I should need to get rid of it. The blisters on my hands have now been replaced with peeling, bleeding skin and I am finding it painful to do everyday, normal things like turning a tap on and off, prepare a meal and even holding the steering wheel of the car hurts. I’ve read heaps of articles about pompholyx and seen some gruesome pictures that look just like my own hands, so I feel quite knowledgeable about the condition now.

A few days ago I noticed a few blisters on my left foot too but, like an idiot, I just kept hoping they’d miraculously go away, but this morning I woke up to two very swollen feet, with all of the toes on one foot covered in sores and one on the other foot too. (I think my feet must have been scratching each other in my sleep!) The left foot was so painful that when I jumped out of bed to take a closer look, I got a shock when I could hardly walk.

My first thought was how could I take Anthony out for afternoon today? That was my plan and I had told him yesterday when I had two normal feet. As usual my incredible mother came to the rescue and visited him and I spoke to him twice on the phone, the first time quite tearfully but the second time (my mother rang me from his room at the nursing home) more cheerfully.

There are a lot of mixed opinions about pompholyx but one thing I have found in almost everything I have read about it so far is that it can be caused by excessive perspiration. This makes a lot of sense to me because, despite the fact that I have always had a problem with this during our Australian summers, it has never been as bad as this year. In fact, a few weeks ago, I joked with a friend that I might have to get botox to stop it (I had read about this treatment and this was just before the pompholyx hit me). It turns out that this may well be a necessity for me if the pompholyx doesn’t go away with all the other stuff I’m taking for it. I could get my frown lines done too – haha!

On the scale of diseases, this is certainly minor and I know many people and friends who are battling much more severe health challenges, diseases, chronic pain and, yes, grief. So I feel a bit embarrassed to be so upset about what has suddenly happened to my hands and feet, but the main reason I am so upset is because it is obviously going to stop me from seeing Ants for awhile.

Ming, who did a whole bunch of errands and other jobs for me today, said (during one of the Home and Away commercial breaks), “I’ll do anything you want me to, Mum – just give me a list!” Then we had a conversation about stress:

Ming: You must be really stressed – look at your foot!
Me: I am now twice as stressed as I was before you said I must be really stressed so shut up!
Ming: Why can’t you just have fun, Mum?
Me: I can’t really have fun with this thing with my hands and feet.
Ming: I could take you out for lunch, to the movies even – popcorn? Pizza? I’ll do anything!
Me: Could you do a load of washing, vacuum the house, wash the dishes, do the groceries, visit Dad and bring me some panadol tomorrow?
Ming: Oh – okay. That’s a lot of jobs and you haven’t given me much warning.
Me: It’s called initiative, Ming.
Ming: No, no, no – you know I hate that word!
Me: Well guess what – I hate the word stress!

The hardest thing about getting any sort of sick when you are caring for a loved one with a proper disease (Anthony) and another one who has just had a second lot of spinal surgery (Ming) and all the other people who you care for, is the feeling of utter helplessness that you can’t help because you are sick too. For me it is, hopefully, just a temporary sick but it may go on and on (pompholyx tends to do that).

Apart from the spasmodic asthma attacks that began four years ago, when I was still working at the university, Ming was still at school, and Anthony’s health was beginning to deteriorate, this is the worst diseasy thing that has happened to me. I’m a bit scared I guess because I’m the carer – I can’t get sick! I am needed!

To those bloggers and friends and relatives who know this feeling, I salute you for your courage and honesty in talking so openly about these things. My empathy has grown a thousand-fold because of this pompholyx thing.

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Daybreak, heartbreak and other breaks

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.

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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!

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