jmgoyder

wings and things

Dementia dialogues 12

Anthony: How do you always find me? It’s remarkable!

Me: I have a really good map, and a really good memory.

Anthony: You look beautiful.

Me: Wow, thanks, Ants! You look good too.

Anthony: I need to get rid of this moustache.

Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.

Anthony: So what do I have?

Me: Well, you have a lack of moustache I guess….

Anthony: Mmm.

Me: Could we resume this discussion tomorrow?

Anthony: Yes, just bring chocolate.

 

19 Comments »

Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.

 

19 Comments »

Forewarned is forearmed

Yesterday was a day of terror for me and last night I couldn’t sleep, thinking that any minute I would receive “the phone-call” from the nursing home, to say that Anthony had died.

In the early hours of today, I eventually slept but woke up and, once again, in the grip of that horrible terror, I reached for my phone. No messages. Phew.

This morning, I headed in to the nursing home, thinking I would be met by sombre faces and bad news and, instead, I found Anthony, alive and in a wheelchair, watching the news in one of the communal areas. I wheeled him back to his room and managed to get him into his armchair, then rang a couple of worried relatives so that they could speak to him on the phone. He managed a few words but kept handing the phone back to me.

At noon, I fed him his vitamised lunch which he ate most of and he said, about the dessert (a frothy vanilla mousse), “My favourite”. I must find out what it is so I can bring him some, because he loves it and it’s easy to swallow.

After lunch, he fell asleep, just like yesterday, but he didn’t lose consciousness. I know this because, every time I shook him, he woke up. Yesterday, he didn’t.

Yesterday forewarned me by forcing me to face the prospect of Anthony’s death, something I have been reluctant to do until now. And, in facing this inevitability, I am now forearmed with the knowledge of how to plan his funeral, right down to the kind of casket/coffin to purchase (the cheapest is still around $1,500 – I had no idea – Ants would be appalled!) I have decided who to ask to do readings, be pallbearers, deliver eulogies and am now trying to decide what music would be appropriate.

The terror has gone – whoosh – gone! There is no way of knowing how soon Anthony will die – even the doctor can’t predict that – but, as the latest deterioration has been so fast, and so shocking to me, I feel much more prepared than I was.

And that’s a good thing.

 

 

23 Comments »

Incoherence

Anthony can’t find or utter the words any more and this is terribly frustrating for him, and for Ming and me. He was much more awake today than he has been for the last week, so I felt a bit silly to have thought/written that he might be on the brink of death. Last year I was terribly angry with a relative who suggested this and now it’s me thinking the same thing, almost a year later.

I am shocked at how, within the space of a week, Anthony has developed dysphagia to the extent that he has difficulty in swallowing even vitamised food, and can hardly speak any more. It is the latter that is most upsetting for me because of how much I have always enjoyed our conversations, no matter how bizarre.

If Anthony stops speaking altogether, I will have to become more creative in what I say to him. The blog will help, photos of the farm will help, Ming references will help, memories will help.

I know that Anthony’s incoherence will soon become a silence that I may not know how to read and this worries me.

Me: I love you, Ants.

Anthony: ….

Me: You’re supposed to say it back!

Anthony: I love you, Jules.

 

 

 

 

21 Comments »

Health kick!

Over the last few weeks I have been making a determined effort to get healthier (you know, the usual things: fitbit, green juice, no wheat, organic wine, aromatherapy) and …

… exercise. Not happening, despite the fitbit!

So yesterday I went to one of the many gyms in Bunbury and tomorrow I will begin one of those 3-day free trials. I met one of the managers (D) and she was lovely. The gym isn’t big and flashy and has an easy-going atmosphere. D asked what I most wanted out of the gym and I said, “No tummy and stronger arms; I don’t want to walk or cycle in here because I would rather do that outside.”

Anyway, I’m quite excited about tomorrow. I’ve had gym memberships before but not for years so I will have to re-learn how to use the equipment.

When I told Ants he said, “Well, you’ll be battling to compete with my fitness” patting his flat tummy. He then proceeded to tell me that he did 25 push-ups per day and that I should try it.

Me: I can’t even do one push-up!

Anthony: That’s why you have your problem.

Me: What problem?

Anthony: The tummy (pointing to mine before I put one of his pillows onto it).

Me: Are you calling me fat? How DARE you!

Anthony: Jules, you know I’m kidding; you are perfect.

This verbal exchange was enhanced throughout by Anthony’s fantastic smile. I’m just glad he won’t see me struggling with the weights etc. tomorrow. I will paint a much better picture when I see him, so that he will be as proud of me as I am of him.

Me: Ants, I admire you so much, so much – the way you keep on being well and fit despite the Parkinson’s! And you never get down like I do. You are amazing.

Anthony: I know.

Me: Oh. Well, anyway, I’ll start the gym thing tomorrow morning  and come and see you straight after.

Anthony: I know [yawning]

Me: Sorry if I’m boring you!

Anthony: Off you go, then.

Me: What? Where?

Anthony: To that wildlife park…

I guess the health kick challenge is on!

 

 

 

 

 

 

 

 

 

18 Comments »

“Ming the Merciless”

During Ming’s last year at high school, all of the kids were allowed to imprint on their grammar school jackets an emblem or phrase that represented who they were. Ming chose “Ming the Merciless”.

And that he is! This week, he mercilessly told me some home truths about how my sadness about Anthony affects him. This has been followed by many lengthy philosophical conversations about a whole lot of topics including life, death, love, loss, grief, acceptance. Occasionally he and I have cried together about our different heartbreaks, comforted each other by just listening, and made plans to get out of our individual ruts.

Ming is not merciless at all. He is the kindest person I have ever known and the way he cares so much about me, and Ants too, is extraordinary in its depth. I think back to all of those nights when Ming slept in the bed next to Anthony’s in order to give me a break from what we called ‘the night shifts’ and I am so grateful for his help, patience, love and comfort.

Now, at 22, this child/man of ours is, understandably, a bit tired of both Anthony and me, but he cares so much that he doesn’t ever want to leave the farm. He gets a lot of peer pressure to ‘get out there’ but he wants to stay put for the time being, work as a waiter, earn some money, and be here for both Ants and me.

And, no matter how many times I tell him that we don’t want him trapped into feeling he has to be here for us, he just reiterates that he loves this home, that he doesn’t want to go anywhere at the moment, that he is content.

Ming is so much like Anthony in this way; Ants knew how to go with the flow, work hard and he had no delusions; he was content with, and proud of, life as a dedicated dairy farmer despite the changes that wreaked havoc with the industry many year ago. I have always admired Anthony’s lackadaisical attitude to life and work and his acceptance of every single ‘whatever’. Ming has this capacity too but he is merciless against himself!

I am so proud of this amazing son of ours – Ming the Merciless!

18 Comments »

Dilemma delights

The other day, one of Anthony’s nephews and his wife visited us at the nursing home. We figured out that we probably hadn’t seen each other since Ants’ 75th. My mother also happened to be there, and Ming arrived soon after because he wanted to re-meet one of his many cousins.

As soon as this nephew entered the room, he sat right next to Anthony, shook his hand, made eye contact, and exclaimed, “Uncle Ants!” then reminisced about when they had been children. He talked directly TO Anthony and, even though Ants wasn’t very vocal, he was responsive and he easily recognised this lovely couple.

It was a wonderful hour or two and, as I was walking the nephew and his wife out to their car, she admitted to me that she’d been a bit nervous, had wanted to remember Anthony as he was, but now felt reassured about how he IS.

The next day, I reminded Anthony of this visit, and his three-syllable, whispered response was “DELIGHTFUL”.

Okay, so that should be the punchline, but it isn’t. What I have learned from this visit, and from the frequent visits of other relatives and friends, is that speaking TO Anthony, no matter how unresponsive he seems, is vital.

It is unavoidable, of course, that, in a situation like this, we will also speak ABOUT him in front of him and I always find this TO-versus-ABOUT very difficult. It feels a bit disloyal to me; that weird scenario between being with the person who is being spoken to versus the scenario in which the person is being spoken about.

30 Comments »

Vacuuming

On the eve of Ming’s 22nd birthday I asked him to vacuum the house.

I had already given him a pre-birthday present of some money, but told him that he would only get the rest if he vacuumed the house.

He grinned, pointed out that the vacuum cleaner needed a new bag, asked me if I remembered how to change the bag, then tested my memory of how to change the bag. I have no idea why I have a reluctance to change the bag; Ants always did that, then Ming. But, in my defence, I am the one who does most of the vacuuming.

Well, having passed the ‘change-the-vacuum-bag’ examination, Ming dismissed me to my newly air-conditioned writing room/office, still grinning (him, not me) and I waited with bated breath for the sound of the vacuum.

I didn’t expect the sound to be so loud. Anthony was always a quiet, careful, gentle vacuumer; he didn’t want to upset the skirting boards. Ming, on the other hand, is a rather violent vacuumer. The BANG AND CRASH sounds were a little alarming so I decided to stay put in the hope that he would forget about this room where I was hiding under my desk.

Finally the sounds of mad vacuuming ceased. The silence was so abrupt that I wondered if the vacuum cleaner was all right. After a little bit more silence I realised that I should have been wondering about Ming.

I emerged from underneath my desk just as Ming entered my writing room. A great big grinning presence.

Ming: Well, I’ve cleaned your house!
Me: OMG that is exactly what Ants said after vacuuming! Every time he did anything domestic, he would make it known that he had done if for me, and I would argue that it was also his house.

I can’t wait to tell this story to Ants tomorrow. I know he will remember his obsession with vacuuming and Electrolux. And I know he will smile at Ming’s vacuuming efforts.

34 Comments »

Hello!

I am interrupting my blog break with a post because of an incident that has shaken me.

Two days ago, Anthony’s brother, J, a couple of lovely nephews, and Ants’ oldest friend, all convened at the nursing home. I didn’t realise at first that this had been arranged by J.- a fantastic gesture except that he forgot to invite Ming and me.

Nevertheless, I was delighted, despite the fact that J’s instructions were to have Anthony outside. The carers couldn’t lift Ants out of his armchair and they were about to get the hoist when the two nephews managed to get him into the wheelchair. I decided then that I would have to go with the flow so I wheeled Ants outside.

He was cold, uncomfortable, un-talked to (but talked about rather wonderfully by the nephews and friend); I sat right next to him and shared some champagne with him until it became obvious that he needed to get back to his room.

I came home, still delighted. It hadn’t been a perfect afternoon but it was better than nothing and I was very grateful for the presence of P. the nephew who visits Ants every weekend. He is so loyal and kind; he is a gift to Ants, Ming and me because of his sincerity and his love for Anthony.

The next day, another nephew (one who regularly visits Ants despite living 200 kms away), rang me to ask what was going on. I didn’t understand the question so he said that J. had rung various family members to come for drinks at the nursing home to say goodbye. I told him that J. and a couple of people had turned up but I hadn’t known why.

Apparently J. had decided to tell all of the family (except Ming and me) that Anthony was at death’s door. When I rang and confronted him, he explained that he just wanted to say goodbye.

“Try saying hello,” I said.

70 Comments »

Last Christmas

Last Christmas was the first Christmas that Ming and I didn’t bring Anthony home and, instead, exchanged gifts and food in the nursing home, where my mother joined us after church. She reminded me the other day that I had promised crayfish cocktail last year but failed to deliver; I think I was probably disheartened and just brought cheese and crackers. I don’t remember a lot about last Christmas except that Anthony was nonplussed by gifts given to him by Ming and me, and generally confused about how to open them; I do remember Ming being hurt and annoyed, and my own hot tears much later at home. It was horrible.

I am determined not to let this kind of scenario play out again this Christmas; if we can’t bring Ants home for Christmas, we will bring it to him, and this time I will do it properly. I will buy six crayfish a couple of days before Christmas and clean/de-shell them on Christmas Eve. Then I will make Anthony’s mother’s cocktail sauce (a secret-ish recipe!).

The real buzz for me is that Ming has agreed to allow me to do the pillow-case/sack thing for the last time. This means I can fill his special Christmas pillow-case with gifts just like Ants and I used to do when he was a bit younger (like a couple of years ago ha!) So Ming and I will wake up on Christmas morning and he will get some surprises and, hopefully, so will I. Then we will meet my mother at the nursing home for crayfish lunch after which Meg and Ming will probably go their separate ways and I will stay with Ants.

Anthony’s prostate cancer + Parkinson’s disease prognoses (both of which were determined several years ago), indicated that he would be probably be dead by now. So my wonderful husband – who never complains, who is never depressed, who never forgets me, who mentions Ming every hour I am with him – has exceeded his ‘use-by’ date.

Maybe this will be our last Christmas with Anthony; maybe not. In the meantime I’ve decided to take a bit of a break from blogging until after Christmas. I am messaging blog friends individually but this will take some time. If anything profound occurs to me I will put it on FB ha.

One of the most exciting things about Christmas is the Christmas Eve dinner at Meg’s (my mother’s) and this year we amount to around 20! My mother does the whole turkey roast thing and I usually bring the ham. Ashtyn Paterson (my niece) does the organisation of Secret Santa stuff. She is a legend!

12342721_10205047838777264_7881845001746518721_n

From L to R: me, Meg, and my nieces, Ash and Sage.

Sometimes I feel like I shouldn’t be happy whilst Anthony is in this predicament; then I come to my senses and yesterday I even lingered at my brother’s place instead of rushing back to the nursing home. And the other week, I lingered in Perth to see my youngest brother, his wife and Special K and, despite the dramatic circumstances, I looked at this family and wanted them to adopt me.

In February next year, Anthony will turn 80. He is not in good health but he is in quietly good spirits. Will this be our last Christmas together?

56 Comments »