jmgoyder

wings and things

Making friends with grief

I have learned so much about grief through my imagined conversations with “Anthony deceased” (as he is described in some legal documents I had to sign the other day) that I thought I’d share them here.

One of the things I’ve discovered is that if I wake up to what I know is going to be a day of acute grief, there is no point trying to evade it (one of the things I was trying to do). Now what I do is sort of greet it kindly, not exactly in a “Hi Grief” kind of way, more in an accepting way, almost as if it is a friend. After all, my grief about Anthony’s death, personified, has more empathy for me than anybody else possibly can.

In a way, the imagined conversations are a way of addressing Grief directly if that makes sense (if you are not sure what I mean then rest assured that I’m not really sure either!) Every time I write one of these conversations, even the ones that were a bit contrived and didn’t really flow) it helped somehow. I fought against doing it for awhile because I didn’t want people to think I was going nuts. I also didn’t want to become dependent on these conversations on a daily basis, to the preclusion of other more ‘normal’ daily activities. But I don’t care about either of those things now. Writing these conversations has often been fun and is sometimes quite enlightening.

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During a grief workshop I attended recently, Pat Kelly, a grief counsellor https://www.facebook.com/pat.kelly.18488169, pointed out that there is no one way of grieving. I found that very comforting in light of the imagined conversations I was/am writing because these have helped me more with my grief than any amount of kayaking, motor-scootering, cycling, swimming, socialising and volunteering (yes, I have been busy) have. All of these activities have helped enormously of course, but writing down conversations I imagine having with a now-well Anthony has been magical.

In re-conjuring Anthony’s voice as a younger, fitter man I have remembered all sorts of wonderful things that I’d forgotten – our holidays down south when Ming was young, our debates about whether animals went to heaven, our private jokes, our delight in the moonflowers blooming, his passion for motorbikes and classic cars, the parties, and so on. I’ve remembered poignant moments and sad times as well but mostly ‘talking’ with him has been a joy. I used to tell him everything even when he became less able to converse so, during the nursing home years, I sort of forgot about the way we used to talk and talk and talk. Remembering these conversations has been like a gift.

Making friends with Grief in this manner reminds me of how I ended up making friends with Dementia. In doing so, a lot of the associated fear diminished and a feeling of wellbeing returned.

I suppose since it’s my grief, after all, I am kind of making friends with myself again too. I’ve been working on that anyway with my wonderful psychologist, Daniella Princi https://www.facebook.com/yourintrinsiclife/ whose program has provided me with all sorts of interesting tools for living my life the way I want to live it.

One thing I know for sure is that Anthony would be proud of the way I am coping with his death and he would be chuffed to think I am pretending to converse him still. He was always very accepting of my idiosyncrasies, as I was of his.

Me: I’ve sort of made friends with the grief now, Ants.

Anthony: Good on you, Jules.

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Still Anthony

One of the things I’ve been most grateful for over the last few years of Anthony’s dementia is that his personality hasn’t changed. He is still easy-going, gregarious, humorous, accepting and gentle. Like Alice in Lisa Genova’s book, Still Alice, Anthony is still Anthony.

Or he was.

The other day, about an hour before Ming and I were due to give a talk to a group of Dementia Practice students, he rang me from the nursing home to say that Anthony had broken a staff member’s hand.

What?

Apparently Anthony has been exhibiting out-of-character behaviours recently, partly due to a urinary tract infection. He is antagonistic and physically resists being put to bed etc. It is painful for me to imagine such scenes as Anthony doesn’t behave like this when I am there so this has come as a shock to Ming and to me. I also feel terrible that someone was injured.

But, picture this:

You have no idea where you are. It’s 4pm but you don’t know that. Two women in uniform approach you with a big piece of machinery [hoist].They are trying to explain something to you but you don’t understand – something about a bed. As they begin to undress you, you try to say no, that you are cold, but you can’t remember the words so you lash out. You are so terrified that the adrenaline kicks in and you fight. If you could flee, you would, but your legs won’t work. You wonder where Julie is and why she’s not there. Who are these women, with their gentle voices and strong arms and why are they putting you into the machine?

Anthony is scared.

In one of the support groups I attend, a woman recently described how her husband’s gentle personality switched overnight; he became angry, jealous and threatening. She said, “I didn’t recognise him. He was a different person.” At the time I thought how lucky we were that this hadn’t happened to Anthony.

Ming and I admitted to the Dementia Practice students that the possibility of Anthony’s personality changing was a brand new challenge. Perhaps I should visit later in the day than earlier so that I can calm Anthony down. I know I thought of this idea ages ago, for different reasons. I’ll ask the staff what they think when I go in today.

I have been preparing myself for the possibility that one day Anthony might not recognise who I am.

It never occurred to me until now that one day I might not recognise who he is.

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An ‘aha’ realisation

Today I did some volunteering at another nursing home before going to see Anthony. I told him I had just come from work (I call the volunteering ‘work’ because Anthony’s lifelong concerns about money are still a big part of his psyche).

Anthony: So how much money is in the bank?

Me: Thousands!

Anthony: How many?

Me: (pulling a fictitious figure out of the air) $35,000!

Anthony: That’s not bad.

Me: What do you mean ‘not bad’? My job is making us rich! You should be proud of me!

Anthony: I am, Jules.

Me: Ants, the reason we are so wealthy is due to all of your shares and your hard work. We don’t ever have to worry about money again because you are such a good provider!

Anthony: But did you turn the pump off?

Me: Ming does all of that now.

Anthony: What about the calves?

Me: All safe, tethered and beautiful. You should be proud!

Anthony: I fixed that fence this morning.

Me: I know – thank you. Everything is fine now.

Anthony: But what about Mum?

Me: Ming is with her – she’s fine.

Anthony: Okay.

Me: I have to go back to work now – will you be alright?

This was our conversation at about 4pm today and I used ‘work’ as a way to leave him with the assurance that I would be back soon. As I’ve said before on this blog, telling Anthony that I am going home often distresses him because he wants to come home too – of course!

I have been naming the above such conversations as “Dementia dialogues” and I sometimes worry that this title may be construed as demeaning or patronising to Ants and other people with Dementia. This is certainly not my intention.

As I was leaving, we had this conversation:

Anthony: You don’t have much of a life do you.

Me: What are you talking about, Ants? I have you and Ming – what more do I need?

Anthony: But we’re all split apart.

I was so shocked by the lucid poignancy of this statement that my heart felt like it did a somersault. Anthony said this without a flicker of unhappiness and I remembered how factual he used to be – how pragmatic.

And then, just now, before I began to write this post, I realised that Dementia might affect, and sometimes kill, physical and cognitive memory, but it doesn’t necessarily affect emotional memory.

I told Ming what Anthony said today and he punched his heart softly.

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Dementia dialogues 9/10

Me: How come there’s water all over the floor? Did you tip your drink out again?

Anthony: Yes, because everybody is dead.

Me: What?

Anthony: This is a funeral home.

Me: No way! This is a nursing home – remember?

Anthony: All of the kids ….

Me: Are they still bothering you?

Anthony: I had to fight one last night.

Me: Did you win?

Anthony: Half and a quarter….

Me: Good on you, Ants! They won’t be bothering you again, I’m sure.

…………..

Anthony: Well come on, Jules – let’s go.

Me: Where?

Anthony: Around the block.

Me: Which block? The farm or the nursing home?

Anthony: The rose garden.

Me: What rose garden?

Anthony: Along the driveway!

Me: It’s too rainy and cold, Ants – sorry. Maybe tomorrow?

……………

The last several weeks have been a bit of a challenge for me because my anxious/depressive tendencies roared into my brain – WHAMMO! – when I mistakenly thought Ants was on the brink of death. I don’t want the knife edge of that grief again and am hoping that I am now better prepared.

Me: I saw an advertisement on TV the other day about cremation versus burial. What do you reckon? You know what I mean? For both of us of course.

Anthony: It’s far too early to think about that.

Me: Okay, Ants.

Anthony: There’s something ….

Me: Is it to do with my exquisite face?

Anthony: I wouldn’t go that far.

Me: What?

Anthony: But it’s quite nice, I suppose.

Me: Harrumph!

 

 

 

 

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Dementia dialogues 23

Me: Daaaarling!

Anthony: Jules!

Me: Why do you look so surprised?

Anthony: Well, I was going up the passageway and I saw her. It was extraordinary.

Me: Who did you see?

Anthony: You.

 

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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.

 

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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.

 

 

 

 

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Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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Elsewhere

The horrific carnage in Beirut and Paris is an indication of a very serious hatred, fuelled by a proliferation of small pockets of extremists. Regardless of religion, history shows that fundamentalism, in all its flavours, hurts us, hurts the whole wide world.

As I sit with Anthony in his nursing home room, tell him about recent events, and watch him sleep, I realise how insignificant our problems are in comparison to what is happening/has happened elsewhere.

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‘Doggone!’

I’m sure Blaze was calmer last time I took him into the nursing home to see Anthony. This time, instead of following me in, he ran across the road to a block of flats and wouldn’t come back until I sat down in the parking lot and pretended I had food in my handbag.

Once I’d grabbed him, I carried him into the nursing home to see Ants. I had envisioned a cosy afternoon watching television with Blaze on Anthony’s lap, snoozing. But Anthony was in the dining room and, despite staff being able to get him to shuffle, using his walker, nearly all the way to his room, both a wheelchair and the hoist were eventually required to plonk him into his armchair. In the meantime Blaze and I went out into the back garden area, then visited a couple of the residents, then sat in the foyer.

When Ants was settled, I carried Blaze in and shut the door wishing I’d persevered in trying to find his leash. He was too excited to stay on Ants’ lap for long and kept wandering around curiously and trying to get out. He’d been patted and admired by staff and residents so I guess he wanted a bit more action. I accidentally shot a whole lot of little videos when I was actually trying to take a photo. The following is the only one that doesn’t include my expletive-ridden “Why won’t this camera work?”

Giving up on the camera, I took about 50 photos with my phone, which all look exactly like this one.

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Fake caption: Man’s best friend.
Real caption: Jules, take this bloody dog away!

In light of this remark, and, after Blaze had done several hundred laps of Anthony’s room and bathroom, refused to relax on Anthony’s knees, turned his nose up at the water in the water bowl I’d brought in, I decided it might be time to go.

It was at this point that I realised there was a power failure because I couldn’t get Anthony’s television to cooperate. Then I got a text from my mother asking me if I were coming to my brother’s barbecue. I answered saying I thought the barbecue was the next day and I had Blaze so might only be able to drop in for a quick drink.

Unfortunately, my departure from the nursing home was delayed when I couldn’t find my car keys. It was suggested by several Blaze-loving staff that I could re-trace my steps. So I shut Blaze and Ants into Anthony’s room and went back to the flats where Blaze had first run away. No keys. I then went back to my car and looked underneath. No keys. Back inside the nursing home, I went back to all of the residents I’d visited. No keys. I went outside to the garden. No keys. I went back to Ants’ room to find them both nonplussed as I emptied my handbag of all its contents. No keys. I rang my mother and said, “No keys”.

Finally (an hour and a half after annoying everyone in my vicinity, especially Ants!) I remembered sitting in the foyer with Blaze. With hope hugging my heart, I shut Blaze in with Ants and ventured to the foyer and … there they were!

I said a (b)elated goodbye to all, gave Ants a big kiss, and came home, promising myself I would never take Blaze into the nursing home again without a leash; and never ever again lose my car keys.

Today, the latter has already happened!

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