jmgoyder

wings and things

A strange incident at the nursing home

The week before last there was a Melbourne cup luncheon at the nursing home (the Melbourne cup is Australia’s annual horse race – ‘the race that stops the nation’). I have mixed feelings about this race but that is beside the point of this post.

Anyway, when Anthony still lived at home, he organized sweeps with family, friends and farm workers and he loved doing this and was very good at it. Horses were picked, money was collected and lists were made; it was great fun. Obviously he can’t do this now so I did a small sweep with just Ming, Ants and me, but it felt kind of false and feeble compared to the efforts Anthony made over the years. Oh well.

On the phone that morning, he said he had reserved me a seat at the nursing home luncheon so I hurried in to be there in time for the televised race at noon. On entering the very crowded ‘events’ room, one of the staff pointed to where Anthony was sitting. There was no chair for me beside him and I noticed there were no other family members which surprised me a bit, so I squeezed in next to him and sat on his walker. Around sixty residents were sitting around three long tables but there were only a few from Anthony’s ‘high care’ section. Each resident had either a glass of wine or beer and plates of nibbles were placed here and there so people could help themselves. I filled Anthony’s plate and helped another man too and then the race began on the television. Staff lined the walls just as excited as residents and once the race was over, the woman in charge of handing out the winnings did so with humour and I broke it to Anthony that we hadn’t won anything which he took in his stride.

At that moment, Anthony said, “Here, Jules, have some of this – I can’t eat it all.” So I spotted a spare spoon and scooped up a bit of potato salad which was delicious. “Have some more,” he said, delighted, but as I went to do so, someone tapped me on the shoulder. I looked up and saw that it was the nursing home manager.

“Julie, can I have a word with you?” she said, beckoning me to follow her into an adjacent room.
“Am I in trouble?” I said, jokingly, following her.
She turned around and frowned. “I cannot have you eating the food. I have already turned away two families because we can’t cater for family members on this kind of occasion.”
I felt shocked and humiliated and apologized profusely, so she said, “You can stay but don’t eat the food.”
“Anthony said I was invited,” I said.
“No,” she said.

I wanted to cry, I wanted to rant, I wanted to know who she’d turned away but I knew, as soon as I re-entered the events room because I immediately noticed the misery on Natalie’s face (Natalie is a resident in high care and is usually robust and full of laughter; her daughter and son visit every day so we have become friends. Their absence and Nat’s uncharacteristically long face told me what must have happened. I patted her on the shoulder but she hardly responded).

I then resumed my seat on Anthony’s walker, my face flushed with a mixture of embarrassment and rage. Once again, Anthony offered me some food from his plate but I whispered, “I’m not allowed to – have just been reprimanded.” He shook his head, disgusted, as I nervously helped him manage to feed himself. Suddenly plates of dessert came out and one of the staff serving said, “Hey, Jules, do you want some cheesecake?” I shook my head and said, “I’m not allowed.”

Later that week I bumped into Nat’s daughter who was looking glum. Like her mother, she is usually full of smiles. When I asked her what was wrong she told me she had been kicked out of the Melbourne cup luncheon and her mother had been miserable ever since. We had a brief, whispered conversation in which we both decided that it wouldn’t be tactical to complain.

I understand – of course I do – that having to cater for every resident’s family members for a big lunch would pose logistical problems but the fact is that in the nearly two years since Anthony has been a resident at this nursing home, I have only ever met a handful of family members who visit their loved ones, so it’s not like there would have been a crowd.

After the lunch was over that day, I went to the nursing manager’s office to once again apologize and tell her that I hadn’t known the rules. I guess she could see I was nearly in tears so she suddenly turned her usually unsmiling face into a half-smile and said, “It’s okay, Julie, you didn’t know.”

For the first time in ages, I cried all the way home.

Note: I have stopped calling it a nursing lodge and am calling it what it is – a nursing home.

The photos are of times gone by.

A Goyders Dardanup

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What’s more important – to love, or to be loved?

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Yesterday, after doing hours of paperwork and three related appointments, I finally got to Anthony’s lodge at 5pm and something in his face lit up. “My beautiful girl!” he said (now that I am 54, being called a girl always works a charm on me). We gave each other the usual hugs and kisses and then I sat down to tell him the latest about my nieces and nephews, my Centrelink adventure and other things, and poured him a small whisky. I knew I couldn’t stay long as I had to get groceries before the shops shut, so he got a bit upset when I had to go. I managed to jolly him out of that somehow and left reluctantly.

At the doorway to his room, I paused, as always, and said to him, “I love you so much, Ants” and he said, “When you go I won’t have anyone to love.” So then of course I ran back to him for one more hug and he was okay, knowing he would see me tomorrow (which is now today).

After getting groceries, I headed for home with his words resonating and I realized, for the millionth time, what an amazing person he is to want to give love more than to receive love.

Ming, at 19, doesn’t really understand why I go into the nursing lodge, take Ants out for cake and coffee, and/or on my errands, or home on weekends.

Me: Because he is my husband!
Ming: But how can you stand it, with Dad like he is? It’s no fun for you and the psychologist said you’re supposed to be having a bit of fun in your life.
Me: Because I love him and I can make it fun now I’ve stopped succumbing to the sadness so much. Anyway, I like going to cafes and so does Ants.
Ming (bewildered): Okay, whatever.

One day, when Ming is married to someone (who I hope will be amazing!) he will understand something about love that I didn’t really ‘get’ until now: that the gift of love is found inside every moment that you give it and not in how much you receive it. I certainly didn’t see it this way when I was his age so why should he?

So to both my beautiful boys: I love you.

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I found out today that Anthony and I are ‘illness separated’.

photo credit to Jane Terren

Ming and I were at Centrelink (Australia’s social security service) this morning to pursue job possibilities for him now that he is not supposed to do manual labour. He is still working for our neighbours as a dairyhand but only for three days a fortnight, and with no lifting allowed. As many of you know, this is because Ming tried to lift something really heavy in our shed a few months ago and actually fractured some of the titanium in his ‘new’ back. He will be scheduled for further surgery in the next couple of months, after which he will obviously have to quit milking the cows for good.

So we were at Centrelink with a the doctor’s certificates and other paperwork that might help Ming claim some sort of interim allowance before and after the next surgery, when (whilst waiting for her computer to reboot) the beautiful woman serving us chatted with me about this and that and she took an interest in my own circumstances. As I had previously received a carer’s allowance when Anthony still lived at home, I was on the system, but she could easily see that I have had no income of any sort for nearly 18 months and haven’t been able to claim any social security help due to living on a farm (asset). She asked me about Anthony and, when I told her he was now in a nursing home, she said, “Well that means you are separated.” I said, “No, no!” Then she said, “It’s okay, I just mean you fall into the Centrelink category of ‘illness separated’ and, as such, you could probably do with some financial assistance.”

She then said she would do anything she could to assist us in our Centrelink pursuits. I was so grateful I nearly got teary and then suddenly she realized that Ming (whose Scottish name is spelled Menzies) used to play football with her own son and, even though she and I had never known each other back then, I not-so-instantly recognized her!

I am feeling a bit uncomfortable about lodging a claim for financial assistance but, on the other hand, Anthony and I have, like so many, paid a fortune in taxes over the decades, so why not? It’s difficult for me to get another job at the moment because I spend a lot of hours with Anthony every week – either here or at the nursing lodge; and it’s difficult for Ming to commit to another job until he knows about surgery (next appointment with surgeon in two weeks).

One of the things I am so grateful for is the fact that my beautiful, now incapacitated, ‘illness-separated’ husband, has had enough savings to sustain us so far. And that we are living on his/our beautiful farm.

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“I’m so much better, Jules!”

Today I picked Anthony up from the nursing lodge to take him for a doctor’s appointment to get some of his never-ending skin cancers burned off with that ice stuff. Having been a farmer all his life, out in the full sun before the days of hats and sunscreen, he develops many of these on an almost daily basis – new eruptions from old sun damage – on his arms, face and back mainly. Even though it hurts, Anthony has a strange liking for the procedure, mainly because he really likes seeing our doctor and so do I.

In the car on the way to the doctor’s office I asked him did he remember what had happened last night and he surprised me by saying yes.

Me: Well I think we should tell the doctor because this seems to be happening more often and you sounded so terrified.
Anthony: I didn’t want to be ordered around.
Me: So you fought the staff, told me I was part of a conspiracy against you, thought you were being tied up, and frightened the hell out of me.
Anthony: They deserved it.
Me: But they were just trying to put you to bed! Was anyone being nasty or pushy?
Anthony: Not really.
Me: So why did you fight them?
Anthony: Oh, just for a bit of fun.

AAARGH!

Before I go on, I should explain that this kind of conversation flows much more smoothly on the page than it does in real time. In real time, there are a lot of pauses and sometimes Anthony’s voice is so soft now that I have to say, “what?” or “say that again?” before I understand what he is saying.

Anyway, his ‘bit of fun’ comment made me laugh, until I became a bit cross.

Me: So you think it’s funny to torment the nurses and make me cry for worrying about you.
Anthony: The first thing yes but not to you. (He reaches out and pats my knee as we pull into the doctor’s parking lot)
Me: Well I’m going to ask the doctor to prescribe you with something for when this happens again.
Anthony: So you want to drug me.
Me: Nooooo! I just don’t want you to have one of these terrified episodes again with nothing to calm you down. Even I take something like that now and then!
Anthony: Yes, but you probably need it.

He has a point there!

When we went into the doctor’s office, he already had his ice-spray thingy in his hand like a weapon (a little joke he and Anthony share), but I told him that our visit was two-fold and then described last night’s incident, including Anthony as much as I could, despite his point of view being different from mine. He, too, thought it was funny when Anthony said it was all a bit of fun and Anthony’s eyes did that rare twinkly thing and he nearly smiled.

A new medication was prescribed, several skin cancers burned off and we left feeling as if we’d been on a social visit. By that time it was early afternoon, so I suggested we eat at a restaurant but Anthony wanted MacDonalds (most unusual!) So we got burgers from a drive-through, went to a park and ate them in the car (much easier than getting Ants in and out of a restaurant), then went to a bakery and bought a fancy tart which he vacuumed up, and a big chocolate cake for the nurses. By the time we got back to the nursing lodge, he was exhausted.

Okay it is now nearing the time I usually ring Anthony to say goodnight. The new pill won’t be available until tomorrow so we may well have a repeat of last night’s situation but this time I will be ready and I won’t let either of us be disarmed. I have to be prepared for the worsening of Anthony’s condition even though every single morning he says to me, “I’m so much better, Jules.”

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Parkinson’s disease dementia and night terrors

I have just gotten off the phone with Anthony for the third time in the last half hour. He is terrified and this is happening more and more often at around the same time of night. Tonight he thinks several people are trying to tie him up, that his house is being rummaged and wrecked, and that I am part of a conspiracy to hurt him. Ming and I have both talked to him and I have also rung the nurse in charge to tell her how distressed he is and that he is confused. She said they had tried to put him to bed (sometimes it takes two or three people) but he fought them all off. I told her he didn’t know what was going on and that we were seeing the doctor tomorrow to get emergency medication for this kind of hallucinatory agitation.

Our farm is a half hour drive away and I feel like I should sell up and buy a unit near the nursing lodge so I can be closer for these night terrors because for him to be this frightened is unbearable for all of us. I know/hope that in the short time it has taken to write this post, he will most probably be in bed and nearly asleep because in the end Ming and I managed to calm him down a bit – very hard to do over the phone.

The prolonged emotional agony of this disease, for all three of us, is like treading water in a strange and unfamiliarly large pool of murky water, and can change within the space of an hour. Earlier, when I rang Ants, he was fine and lucid and gorgeous. His words don’t come out very well any more so I was shocked by tonight’s frantic eloquence and his absolute terror. My feelings of helplessness are like jagged jigsaw pieces accidentally placed in the wrong box – futilely useless.

I love him so much.

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Kindness

I have just watched the 6th episode of Ricky Gervais’ Derek, and am struck mostly by the way it portrays a nursing home environment and the kindness of carers (rather idealized, nevertheless nearly real). It broke my heart to watch this because, as many of you know, my husband, Anthony, is now in a nursing home; but it also made me laugh because I can relate to many of the antics. I think this is a series that all who work in nursing homes should watch because it re-humanizes the people they are caring for. My gratitude to Wattle Hill Lodge staff for caring for my husband is something that leaps into my mind and heart every morning when I wake up without him here at home.

The kindness expressed, via gifts from friends to the children, facebook messages and blog support, to my family – my mother, brothers, sister-in-laws and to all of the children injured in the car accident two weeks ago, including my niece’s best friend (the niece still in hospital) – are so appreciated.

One of my brothers and his beautiful wife are all home now with their three injured-but-recovering children. K (11-yr-old nephew with the broken femur) is excited that his best friend has broken his arm in a trampoline mishap – well, not excited but you know what I mean. M (K’s twin) took her broken fingers and toe to a disco last night, still wearing her neckbrace! And T (also still in neckbrace) continues to stand tall and to support all of us with her amazing attitude and grace.

My other brother and his beautiful wife are in a more tenuous situation as they await their daughter, S’s spinal brace to be fitted so she can get out of that hospital bed. I know/pray she will make a full recovery long-term but at the moment it’s all very emotional and anxious for all of us.

The moments of absolute fury that this happened have been alleviated by the kindness expressed to all of us. Thanks to all. And thanks, Ricky Gervais, for a different perspective on the act of kindness.

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A perfect arrangement

Ming offered to pick Anthony up on Monday and bring him home for the day, then take him back to the nursing lodge in the late afternoon. I can’t believe how much this improved the day for me! It was so wonderful not having to make the two trips, each of which takes around an hour if you count the time it takes to get Anthony in and out of the car and then back into his room at the lodge. It was also great fun for Anthony to have his big son driving him around and Ming got to spend time with Ants on his own during the trips to and fro.

When I take Anthony back to the nursing lodge he often gets really unhappy and sentimental, and saying goodbye for the evening is sometimes a bit tearful for both of us. But with Ming, this doesn’t happen so that is a real bonus. This arrangement was also great because, having done the two trips with Anthony, Ming didn’t feel he had to spend every minute of the day with him. This can be a bit of a strain for Ming, especially when Anthony isn’t making any sense or doesn’t speak at all.

Anthony and I spent most of the morning in the kitchen while I made chicken and vegetable soup for our lunch. Then he wandered around the farm (wonderful!) until he became too wobbly. Back in the kitchen he watched me make a blue cake while we caught an old episode of Midsomer Murders on the television. The cake wasn’t quite cooked when it came time for Ming to take Anthony back so I surprised him with it on his return. As you can see, he was nonplussed.

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Ming said he will drive Anthony back and forth whenever he can. This is a perfect arrangement.

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The way to a man’s heart?

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Ming’s Sunday breakfast: I spread half an avocado on two pieces of wholemeal toast, then cooked eight bacon rashers, two sausages, three eggs and one tomato. It took me around 10 minutes to prepare. It took Ming exactly four minutes to consume.

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I took Anthony out to the Dome this afternoon where he demolished an enormous piece of chocolate mousse cake with extra cream. I sipped my coffee and watched in amazement.

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After taking Ants back to the nursing lodge and settling him into his room, I came home to find Ming sitting in the living room hungry. I am not sure if he has forgotten where the kitchen is, or forgotten how to open the refrigerator which generally has food in it, but he appears to have some sort of mental block when it comes to feeding himself. So I gave him his requested snack of strawberries and cream with some reluctance. He ate it unreluctantly.

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The Australia puddle and other Spring things

The puddle in our driveway has held the shape of Australia for weeks and weeks and even had a Tasmania, but the latter evaporated a couple of days ago, before I remembered to take a photo. I wish I had, as it might have made me famous! I’ve decided not to get that Australia-shaped pot-hole filled with gravel now, in the hope that next Spring it will once again rain relentlessly and re-create the Australia puddle, with Tasmania, on our driveway. Then I will take lots of photos and have an exhibition and get rich. The reason I didn’t take the photos this time was because it was raining and I didn’t want to get drenched to photograph a puddle (I think that is more for the professionals.)

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A blue wren (very hard to photograph because they are so tiny and so fast!) After several attempts to get him in more natural surroundings, he landed on one of Anthony’s salvaged washing machine insides, that we use for an outside barbecue.
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A rare vision of Uluru looking calm. He is usually feisty, having to compete for the wheat with all the winged creatures.
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G9 in a tree. I have never seen him her do this before (even though I know that, at sundown, she flies up into the wattle trees for the night with all the other peafowl).
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Ming, with the dogs.
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Something wonderful happened today; I became a great-auntie for the first time. A beautiful baby was born and I mean this sincerely because, let’s face it, most babies are quite ugly for the first few days/hours – but not this one! She is exquisite! In respect of the new parents’ privacy, I will ask them before putting any photos of the kid on my blog.

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There is no such thing as wireless!

Such fun! The new modem suddenly stopped working today, and the old modem suddenly started working, except for when it needs little smokos, which is every few minutes. Hence, this a very quick post to say that my midnight visitor turned out to be a genuine neighbour’s son, looking for a genuinely lost dog but I’m still not sure why this had to be after midnight.

I received a reply from the Australian Journal of Dementia Care to say that they would be delighted for me to submit articles – yay! Coincidentally, they had featured something about my long-ago-published book about Alzheimer’s disease in their last issue – serendipity is so weird.

Anthony home all day today with sun shining. He actually chopped a bit of wood and walked around the farm without his walker, until he nearly collapsed from exhaustion. I was worried he might fall but then thought what the hell, he needs some autonomy back, so I just continued doing the washing/folding, feeding animals etc. but I found this difficult because I remember the falls before the nursing home (he doesn’t).

When it came time to take him back to the nursing lodge, there were a few mutual tears. I am feeling terribly sad writing this and internet is probably gonna die in a minute. If so, just know I’m doing my best to keep up with posts etc. but sometimes it all gets too hard.

Now I just have to go and plug in the wireless phone, new modem, Ipad etc. and all will be well – yeah right!

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