jmgoyder

wings and things

Oct 30

A problem is a problem

by jmgoyder

I can’t call a problem a challenge because, to me, a challenge implies something zingily positive whereas a problem is something devoid of zing. It seems more useful to see some of the problems I am facing, with Anthony in the nursing lodge, as problems. I guess I’m not very ‘new age’ – sorry but no matter how many daisies surround a cowpat, it is still a cowpat and it stinks.

So, as most of my ideas of how to cheer Anthony up have fallen fairly flat (reading/showing him the blog, taking old photographs in, buying him the gramophone, going out to lunch, bringing him home etc.), I have decided to establish a strict routine every week and write it down for him, and me, and stick to it. This will be good for both of us because, my own personal turmoil, grief, loss of job, and Ming challenges (yes, I can call these challenges), has caused me to lose all semblance of a routine.

Maybe a whiteboard would be a good idea. I could put it on Anthony’s wall in the nursing lodge and write down exactly what day and time I am coming in, and other plans. I could also write our home phone number (which he mostly can’t remember) so he can ring me for a change. Actually I could also write down the phone numbers of his favourite friends and family on the whiteboard. These are in a notebook in one of his drawers but he keeps losing this, or not understanding it.

Perhaps the daisies will grown into the cowpat and give it a new odour. You never know! Nevertheless, a cowpat is a cowpat and problems are problems, not challenges.

Godfrey has a challenge in teaching the gang ‘Gangnam’ dance moves.

Daffy has a problem with loneliness because he is the only Indian runner duck left.

Animal Family Wings

41 Comments »
Oct 29

Love story 110 – Inseparable

by jmgoyder

Less than two years ago it was unthinkable that the day would come where Anthony would have to go into a nursing lodge. I vividly remember making a secret appointment with our doctor to discuss his deterioration and, after arranging Silver Chain respite help that day, Ming and I went into town. During the conversation with the doctor, he mentioned the inevitability of nursing home care and Ming, nearly crying, said, “No, we will never put Dad into care.” The doctor gently said to him, “You don’t know what is coming.”

And we didn’t. All three of us could never have predicted how bad it would get – hallucinations, immobility, stroke-like episodes, falls, loss of hand/eye coordination, confusion, nightmare horrors, sleepless nights, sleep-filled days, loss of appetite, subsequent dramatic weight loss, confusion, cognitive problems, ablutionary problems … and the list goes on. Ming transformed from a devoted son to an intolerant son and I transformed from a devoted wife to a physical and mental wreck. But I only see that now – in hindsight.

The things I wish:

  • that I had stopped asking Ming to do occasional ‘night shifts’ with Ants while Ming was still at school;
  • that I had discussed nursing home/lodge possibilities with Ants earlier (he was assessed as a candidate for ‘high care’ over four years ago); and
  • that I had broached the subject of death with both of them earlier.

Bubble and Baby Turkey are inseparable but I think this is because, initially, there were four Bubbles and four Baby Turkeys and (except for these two) the foxes got all of them when they were littler despite my vigilance.

Ants, Ming and I were inseparable too until Parkinson’s disease began to steal pieces of our jigsaw. Ming took a few leftover pieces, went into his room and shut the door; I tried to find some of the pieces of a blue sky, but they all looked the same; and Ants never liked jigsaws in the first place.

This photo was taken a few years ago when we were inseparable.

Family LOVE STORY Wings

59 Comments »
Oct 28

Taxi adventures

by jmgoyder

The day had become unexpectedly hot by the time the wheelchair taxi arrived with Anthony at noon. I rushed out and said hi to him through the taxi window and then stood waiting for him to be manoeuvered out of the back of the taxi but it was taking such a long time that I ran out to the yards and let all the poultry out. When I got back to the taxi, I realized why it was taking the driver so long to get Ants out; he wasn’t in a wheelchair!

Grrrrr! As the taxi driver and I tried to get a very immobile Anthony to use his walker to take the few steps onto the electronic ramp thing at the back of the taxi, I exclaimed a little to Ants and the driver about the lack of a wheelchair and the driver couldn’t understand why the nurses hadn’t put him in one either. (I found out later that Ants had refused).

Anyway, despite this, Ming and I managed to get Ants to an outside table where we all ate lunch. Ming was sullen, Ants was silent and slumpy and I was hot and bothered. Oh well, the corned beef and salad was a success. Eventually it got too hot outside so Ants came inside (he had recovered his mobility) and we had a cup of tea in the kitchen where a couple of attempts at conversation were hampered by Anthony’s  rather mumbly incoherence. But. yes, it was evident that he was happy to be home.  Then Ming decided to put on an episode of Wooster and Jeeves (he had recovered his humour) and I left the two boys to it because, when all three of us are together, there is now a new tension. I happily withdrew to do the dishes and hang out the washing.

I could hear Ming’s laughter but not Anthony’s as he has forgotten how to laugh of course. because of the rotten PDD. He used to absolutely crack up at this show – and that was only a year ago. At one point I heard Ming, yell out (not unkindly) “C’mon, Dad, have a laugh!”

Then I had to ring the taxi people to change the booking from a wheelchair taxi to a sedan to take Anthony back to the nursing lodge. Ming soon went off to milk the cows and I watched some of the show with Ants, then reminded him that the taxi would be coming soon. He immediately became despondent and demanding that he should be able to try staying overnight and, for the millionth time, I explained that I could not manage him in the nights because he was too heavy and we almost had an argument. Then the taxi arrived and I helped Anthony out and he walked using his home walking stick and shrugged my hand away in this new nasty way he has developed.

The taxi driver was someone we hadn’t met before and, when I explained about the wheelchair taxi mixup he did what many people do and said, “This bloke doesn’t need a wheelchair – look at him. He’s fine!” And Anthony said, bitterly, “Some people don’t think so.” Of course the taxi driver could see that Anthony wasn’t fine at all but he was being kind to Ants and I appreciate that. However, this kind of remark is really unhelpful when you have just tried to explain to someone that they are in a nursing lodge because they are not fine. Argh!

Then a very funny thing happened. I was trying to fold up Anthony’s walker and in order to do so I had to remove the basket. The taxi driver, being a gentleman, offered to help and leaned forward to take the walker and somehow the basket, that I was holding in my other hand, got caught in his fly (you know the front zipper of jeans). The trouble is, I didn’t know this because I was looking at Anthony, so I was tugging at the basket, not realizing it had hooked itself into this man’s fly. It was only when he yelped that I saw what was going on and I quickly let go of the basket so that he could untangle himself and then I nearly collapsed in hysterical, apologetic laughter. And then I just could not stop laughing – as I was saying goodbye to Ants, as I was paying the fare – it just kept bubbling up and out of me and the taxi driver was laughing his head off too.

As I said one last goodbye to Ants, the laughter hit me again and I buried my guffaws into his chest as I hugged him, then pulled away to see if he might be smiling. He just looked at me with his shark eyes before they zoomed off.

He has forgotten how to laugh.

Well, I haven’t!

Family

46 Comments »
Oct 28

The wheelchair taxi woman

by jmgoyder

When Anthony has been wheelchair-taxied home and back he has had a variety of drivers. One of those drivers is a lovely woman who dropped in unexpectedly yesterday morning on her day off to ask about buying peachicks. We exchanged phone numbers so that I could ring her if we are lucky to get any hatchlings but admitted that I wasn’t sure what the chances were due to our fox problem. Also the peafowl are very independent so I don’t know if and where the peahens are laying (I obviously need to do some research!)

Anyway, during our short conversation, she asked when ‘hubby’ was coming home again and I said I had begun to think this was a bad idea because it upset him so much to go back to the nursing lodge after being here with us. She disagreed and said that even though he is upset each time she takes him back, it is well worth it for his sake, to be home even if it’s only briefly. “It’s the same for every person,” she said, “Don’t stop bringing him home.”

So guess what? Anthony is being wheelchair-taxied home in around 2 hours, for lunch and the afternoon.  Wish us luck!

Oh no – I better hurry up and hide those two pots with the dead azaleas in them! On the other hand, Anthony does know that I am not a gardener.

Family Friendship Wings

46 Comments »
Oct 27

A repertoire of lies

by jmgoyder

Today I am travelling an hour up the road to meet my wonderful friend, Andrew, who will be travelling an hour down the road, to have lunch at the town halfway between his place and mine. Now Andrew, who I’ve mentioned in previous posts, is gay, and in a committed relationship. Despite these facts, Anthony has mentioned him a few times lately, in a suspicious way, so obviously I cannot tell Anthony about my lunch date today because I don’t want him to suffer the jealousy that has begun to rear its ugly head.

So I have to lie. And I have lied. I’ve told him that I have to take Ming to a party in this town and I might not be back in time to go and see him in the nursing lodge, but that I will see him tomorrow.

I have begun to develop a repertoire of lies to explain either my inability to come in to see him, or my inability to bring him home, because I am too gutless to actually tell him the truth when I know how much the truth will hurt him.

Family Friendship

57 Comments »
Oct 26

Disorientation dilemmas

by jmgoyder

Over the last couple of weeks I have become more and more reluctant to take Anthony out of the nursing lodge to either bring him home or elsewhere, even with the use of the wheelchair taxi, because of how often these ‘outings’ sort of backfire.

One of the nurses said to me the other day that when he gets back to the nursing lodge he is often moodily unhappy and it has been suggested to me by friends, family and staff, that taking Ants out of an environment he is still adjusting to might be detrimental rather than delightful. Now, in principle, I already knew this because I spent many years working as a nurse, then undertaking a PhD about dementia and finally having a book published. Wiithin that book, I devoted a chapter to this very issue, so I do know.

Back then I was writing about a patient who always wanted desperately to go home so one day, I took him out for a walk up the street and, instead of being delighted to get away from the nursing home, he became even more disorientated and I had to bring him back much sooner than I expected. It was a humbling experience because I had thought, at the time, that I would cheer him up but that little venture out exacerbated his confusion and he was more agitated than usual for a couple of days. Yes, I felt bad but I also learned something.

That was years ago – well before Anthony and I were married. I told him the story of this man and Ants was proud of me for undertaking the thesis and he said I was too kind and I should have just left the situation alone. He said, “Jules, he needs to settle.” Ants felt so sorry for that man.

Now he is that man.

Family My published writing

66 Comments »
Oct 26

I am pregnant!

by jmgoyder

I bet that shocked you! Of course I am not pregnant; after all I am 53 and Anthony is in a nursing lodge. But I keep having dreams about being pregnant and they are so real that I wake up in the morning and am surprised that I am not pregnant.

Last night, everything in the dream was initially as it is in real life: Ants was in the nursing lodge and Ming was 18. Then it got really bizarre because in the dream I had only just given birth to a beautiful little girl, to find myself pregnant again. I was bewildered at how this could be possible and my friends were looking at me askance as if I were some sort of alien, or else had dabbled in an affair. I woke up whilst still pregnant and trying to figure out how and why this had happened.

I don’t find these dreams disturbing at all; I find them rather interesting adventures. Also it is easy to see why I might be having these dreams: (a) the birds are madly mating, and loudly, because it is Spring; (b) Anthony has begun to think I have found another man; (c) Ming is giving me the whoops; and (d) Tapper, the duck, is still sitting on her eggs hoping they will hatch. As for deeper, psychological interpretations, well that is probably a minefield that I would rather avoid at the moment.

Perhaps these dreams are a signal that something really great is about to be born. That would be good!

[Or perhaps it’s just that we are inundated with eggs, the peafowl keep pooping on the chookhouse, or I need to go to the gym? Who knows!]

Family Wings

51 Comments »
Oct 25

Pokemon!

by jmgoyder

Before Ming was eighteen months old, I had over three huge albums with photos. I couldn’t bear to get rid of any of these pictures of Ming, even the ones in which I’d accidentally missed his head completely and all that could be seen was a torso, a nappy falling off and stubby, grubby little legs.

Those faulty photos, in which Ming’s eyes glowed bright red, became his favourites. “Ming dwagon – Mummy look!” he’d exclaim, delighted.

I’d show my albums to anyone who seemed remotely interested, but it wasn’t until my mother got a fit of the giggles that I realized I was overdoing it – just a bit.

“Julie, all of the photos for fourteen pages are exactly the same – just Ming sitting in the baby bath,” she laughed.

“No they’re not, Mother,” I said, indignantly. “Look closely – in this one he has that coy expression; in this one he’s twitching his nose; in this one he’s scrunching his eyes; and in this one he has bubbles all over his cheeks. And see, here, over the page, the light is slightly different, so his eyes look bigger and….”

By this time my mother was hysterical with laughter. “But it looks like pages and pages of quadruplets,” she spluttered.

It was months before I took another photo!

Eventually I got my ‘photographer’s’ confidence back, but by this time Ming had, unfortunately, developed whiskers. Not real whiskers, of course, but black texta does have a certain texture about it, especially if applied thickly and often.

It was the Pokemon creature, Raticate, who provided the inspiration. Raticate, being rat-like, had whiskers that Ming just had to have. His first attempt wasn’t so successful; he ended up covering most of his face from the nose down with black lines and then got a terrible fright when I showed him a mirror.

After that, it was my job to draw the whiskers onto Ming’s face. Ming became more and more particular about each hair-like stroke of the texta. One application would last around three days because he violently resisted having his face washed. “MING’S RATICATE WHISKAS! MING’S RATICATE WHISKAS!” he’d yell repeatedly, frantically avoiding the sponge.

The trouble with all of this was that I wanted to take the next series of Ming-photos and the whiskers didn’t fit my vision of cute. Neither did the fierce scowl that accompanied the whiskers, for a truly authentic Raticate look.

But, like many things, I got used to the whiskers, so much so that after awhile they just seemed a natural part of Ming’s face. I started taking photos again. So I now have two albums of identical photos of a severe looking two-year-old boy with what looks decidedly like a moustache! The phase only lasted a few months. Gyarados succeeded Raticate and, although Gyarados didn’t have whiskers, he did do a pretty effective water attack. “SPRISE ATTACK!” Ming would yell.

Give me whiskers any day.

I miss Pokemon!

Animal Family Friendship Wings

20 Comments »
Oct 25

Paranoia

by jmgoyder

King: Julie hasn’t been as attentive to us as usual. Have you noticed?
Prince: Yes I have noticed!

Frosta: Yes, I’ve noticed it too, guys, and I’m a bit hurt too, but from a female perspective, I understand that she is simply going through a blue wren phase.
Prince: What’s a blue wren?
King: Those stupid little birds that flit around our heads all day.

Parkinson’s disease, in its final stages, can lead to confusion, depression, hallucinations, delusions, moodiness, dementia, and paranoia. Ironically, some Parkinson’s medications can also have these kinds of side effects which is why it is such a difficult disease to treat. Until recently, it was Anthony’s physical debilitation that was the primary concern. Yes, hallucinations were a big problem but that was eventually improved by some changes in medication.

So the nursing lodge decision was made on the basis of his physical disabilities – immobility and incontinence (and other factors). But lately, there have been some signs of psychological problems. His confusion in the evenings has become a constant and his depression too, and  last week I blogged about his uncharacteristic anger with me. Today, when Ming and I visited, he was different again. He had a strange, suspicious expression in eyes (eyes which are so difficult to read now) and he began a mumbled diatribe about the nurse who had showered him this morning, saying that she had kicked his foot and hurt him. He even used a few insulting expletives so I left Ming with him out in the sunshine and went in to talk to the head nurse.

This is only the second time I have raised an issue. The first was last week when I told her that his anger with me was a new thing, and today, without going into exactly what he had said, I mentioned that he seemed to have something against the nurse who showered him this morning. I admitted that I didn’t know if he was delusional or if she had actually been a bit ungentle with him and emphasized that his complaining was, like this new anger, uncharacteristic. She said she would look into things tactfully and we both agreed that it may be a new symptom of his PDD. I said I would see his doctor asap to see if his meds. could be altered (for the millionth time) to address this new out-of-character behaviour.

She said that he was occasionally a bit rude and nasty to staff, especially if their ethnicity didn’t match his and I was a bit shocked and reassured her that this, too, was completely out of character. She patted me on the back and Ming and I came home a little stunned by this rather rapid change in Anthony’s personality. The other thing that has been happening lately is that he has begun accusing me of having a boyfriend (which, of course, I don’t!) and previously he was never the jealous type.

I hope we can do something about this because it is very worrying. I mean if he is nasty to the staff they are hardly going to love him are they. So this is a real dilemma in terms of his care.

Animal Family Wings

36 Comments »
Oct 24

Love story 109 – Cold

by jmgoyder

I find it almost impossible not to worry about Anthony, especially in the evenings. I ring and speak to him every evening and he is often confused. Tonight he said he was still in town, that he was really cold, then asked me when was I coming to pick him up. I jollied him out of it by saying that the nurses would put him to bed soon and I reminded him to ask for an extra blanket. I managed to reassure him.

I could hear the grin in his voice when I said, “Okay, schnookums, see you tomorrow”, and he said, “Goodnight baby, I love you.” He was unhappy when I rang but happier when we finished the call. Phew!

A few minutes later I began to worry about him being cold, about whether the nurses putting him to bed would be gentle, about his nightmares and even about how tomorrow would pan out before I got in to town to see him. Usually I don’t let myself worry like this. Usually I make myself believe that he is okay because, as far as his physical care is concerned, he is in very good hands and the nursing lodge is superb. But I worry about him being miserable and I feel so impotent at this time of the evening.

The cold thing is yet another symptom of how the Parkinson’s disease has affected his ability to interpret things like temperature.  He feels the cold terribly and has done for a few years now, even if it is hot. For example, he used to say his feet were freezing and I would feel them and they would be warm as toast. Conversely, he would sometimes say his feet were burning hot and I would feel them and they would be cool. It never seemed to match with the actual temperature and it became a constant night-time job when he was still home. It was always either a toilet or a temperature issue that caused him to call ‘Jules, Jules, Jules!’ until I got up and helped him out.

So that’s why I worry now. Does he call out for me in the middle of the night at the nursing lodge? Does anyone hear him? He isn’t good with finding or ringing his bell, or using the television remote or even dialling a phone number. One of the nurses says that he sometimes yells out, “You, hey you!” because he can’t remember anybody’s name.

I don’t usually let myself get worried in the night because it is too unbearable to wonder if he is okay. He should be asleep by now so there is a certain amount of comfort in that and he apparently sleeps very well now, so that is good. I don’t usually let myself miss him as much as I do tonight but sometimes I have to let the reality of what is strangely akin to a separation or a divorce to seep into my psyche and I almost stop breathing from grief.

He will never read this because his cognitive abilities are faltering, so all I can do is to say here what I say to him over and over every day: “I love you, Anthony.”

And please, God, don’t let him be cold.

Family LOVE STORY

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