jmgoyder

wings and things

The hand-shake

Yesterday, I was in Anthony’s room in the nursing lodge when a family member of his popped in to visit. To begin with, this family member and I were somewhat awkward with each other, which wasn’t helped by the fact that Anthony was having what Ming and I have always called ‘a wobbly’ where he can’t properly talk etc.

So I had to kind of ‘broker’ the conversation between the family member and Ants, which was so hard for me because, despite making myself willing to forgive several weeks ago, I still felt a residue of rage against this family member for having hurt Ants/us in the past.

But, as he went to leave, and shook Anthony’s hand, I suddenly, involuntarily, reached out my own hand to his and we exchanged a hand-shake. Clumsy words were exchanged but that doesn’t matter because that hand-shake meant that finally I have forgiven and can move forward now and, perhaps, the enmity might now be resolved.

Of course nothing is perfect but the fact that my hand-shake happened in front of Anthony is like a gift to both of us. Apart from Ming, this family member and I are probably Anthony’s favourite people historically – I don’t know. Many other family members and friends have made much more effort to visit or take Ants out etc. This particular guy is probably afraid, just as I am, that he is soon to lose someone he loves.

The hand-shake is a very useful gesture in situations of conflict, confusion, anxiety and despair – and happiness of course!

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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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Nightmares

I had a dream last night that someone I knew (it wasn’t clear in the dream who exactly he was), took me to a holiday house somewhere near the sea. It was a really shabby old house and I felt a bit reluctant to go in but I did anyway because I didn’t want to hurt his feelings. Then, once I was inside, the door shut with a clang, and I knew immediately that I was doomed because a hanging rope was already in place for me and the someone-I-knew became a cackling stranger who was going to hurt me before killing me. The terror I felt within that dream woke me up, and I entered the day in a daze of perspiring relief that it was just a nightmare.

Have I read too many books, seen too many movies, thought too many thoughts, felt too many emotions? Yes, probably, but this was the most frightening nightmare I have ever had. Of course this nightmare is not hard to interpret at all I guess – a bunch of mixed emotions following trauma; ongoing anxiety for all those affected by trauma; shame, guilt and embarrassment over the stupid things I’ve said and done since the trauma; and a momentary wish that I would die.

The nightmare has made me see much better what it must be like for Anthony when he experiences the night terrors and and hallucinations of his PDD. If I can experience such a vivid nightmare whilst being physically healthy, and wake up with my face covered in the sweat of terror, then what is he going through?

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From heart to heart: The Dr. Says

I have made many friends in the blogosphere, one of whom is Sandra Callahan. She is wise and funny and positive and she and I share some very similar experiences. We have supported each other through many ups and downs and yesterday she made a comment on my post that compelled me to rethink yesterday’s doctor’s appointment with Anthony during which he described his dreadful terror the night before as ‘a bit of fun’. Sandra said, ‘He must have been embarrassed by his behavior. I cannot imagine how scary it must be when he doesn’t recognize people and they are trying to force him to do things he doesn’t understand.’

Sandra’s comment made me realize that Anthony’s bravado with the doctor was to cover his embarrassment and, even though I was aware of this at the time, it didn’t really hit me until I read Sandra’s wise words. Of course he was embarrassed – to be confused, to have been terrified of nurses, to have possibly made a fool of himself, and to have worried me so much. Anthony’s ‘bit of fun’ was his way of covering up his embarrassment and I understand that much better today than I did yesterday thanks to Sandra. She has once again helped to sharpen my sense of perception with her amazing empathy.

Our hearts have a lot in common except for one fundamental thing: mine is still beating loud and clear and Sandra’s is failing. She has congestive heart failure and is dying. But she is also living to the utmost, encouraging people like me and talking honestly about dying. Her book is now available and here is the link.

From my heart to your heart, Sandra.

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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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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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