jmgoyder

wings and things

Can dementia be a blessing in disguise?

Lately, I have caught myself (guiltily) wondering about this question and its many off-shoots. Nevertheless, it is probably a rather controversial question to ask, so I apologize if it offends anybody but I wanted to ‘put it out there’ to see what other people think.

A few weeks ago I discussed the hesitant beginnings of this question with Anthony who now knows that dementia is creeping up on him. He knows because it has been mentioned by various professionals in front of him; by me, carefully; and by Ming frankly (“Dad, you’re losing the plot!”)

PDD is an acronym for Parkinson’s Disease Dementia but this condition is not as well known as Alzheimer’s Disease despite the fact that its symptoms are so similar – ie. loss of short-term memory, loss of ability to remember how to do normal activities (walking, speaking, ablutions, eating etc.) In the final stages of Parkinson’s Disease, which is where Anthony is in this strange continuum, the dementia usually begins to kick in.

So far, the dementia has been gentle, but unpredictable and, as I said to Anthony yesterday, “Mostly you are lucid but sometimes you are gaga”, and he agreed. It reminded me of all those years ago when I was looking after his mother and her extreme distress at becoming forgetful and confused. I have never forgotten her tears that day because she was not the crying type; she was stoic. Anthony is like that too, but I have noticed that, when lucid, he is sad and, when gaga, he isn’t sad.

A few weeks ago, I wanted to find a miracle cure for the encroaching dementia but now (apart from the fact that there is no miracle cure), I wonder if the hastening of dementia would be a blessing in disguise.

I don’t know what to wish for anymore.

Any thoughts?

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Yearning

I am laughing and chatting and listening to music and watching the birds and giving Ming a hug and cooking dinner and turning the television on and washing the dishes and changing the sheets and blogging and reading a good book and checking facebook and deciding whether to give the emus half a cabbage or a whole one and half-noticing the sunset and hoping the phone won’t ring and hoping the phone will ring and making a shopping list and trying to find my diary and paying bills and answering emails and making a to-do list and feeling glad about some things and sad about other things and thinking about pruning the roses and baking bread with the flour I bought a few months ago that probably has weevils in it and wondering whether to have a coffee or a tea or a diet coke or a beer and feeling hungry and feeling sick and wanting to go to bed and wanting to wake up and cleaning out my office and organizing my paperwork and resigning from my job and loving my friends and loving my family and loving the dogs and wishing I had continued to write columns for magazines and wishing I had written more than one book by now and and hating getting older and loving getting older and wondering what it would be like if we had more than one kid and remembering how I nearly got frostbite in Canada and wishing I had rung Tulia in PNG before he forgot about me and wishing I remembered everybody’s birthdays and wishing we had more money and laughing and chatting and helping Ming with lyrics and loving grammar and being amazed that he has the fireplace lit and feeling glad that it isn’t going to be as cold tonight as it was last night and wishing the day were night and the night were day and dreaming about eating fairy floss and Disneyland and sunburned shoulders and feeding the squirrels and wanting to find the keys to wind all of Anthony’s clocks and opening my mouth to say something to Ming but he is busy and wondering how my niece’s preparations for her wedding are going in Scotland and thinking it might not work to take Jack the Irish terrier into the nursing lodge and wishing the kitchen staff would bend the rules and give me scraps for the chooks and delighting in the anticipation of fresh eggs and thinking how lucky I am to live in such a beautiful place and wondering why good people suffer and reminding Ming to set the alarm so he will get up to help milk the cows for the neighbours and finding the library book I lost several months ago and laughing because I forgot to remember to do whatever it was and then ….

…. it hits me like a car crash – the grinding metal of grief and I stop breathing, terrified that there might be another slamming of brakes, swerving of lights, skidding of tyres but, instead, there is silence, so I creep into the bathroom and lock the door and put the noisy fan on so that I can muffle into my collar the horrible sounds coming from throat so that Ming won’t hear me or worry about me or get impatient with me or wonder where his dinner is and, eventually ….

….I come out of the bathroom and into the light-filled, Aga-warmed kitchen and continue to stir the stew I have made with fresh vegetables and meat and Ming comes into the kitchen excited about his new lyrics and a new tune and wants me to listen and, once again, I am laughing and talking and listening to music, knowing that by now Anthony will be asleep.

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Yawning

Well so much for the red wine idea. When I went into the nursing lodge this afternoon I could see that it wasn’t going to work today. I walked in through the entrance doors to the unlocked side of the section where Anthony is, past the foyer and into the big room where various activities happen, and stopped short when I saw that there was, indeed, an activity going on.

I stepped back and apologized for my intrusion into what I found out later was an occupational therapy session of skittles (like bowls), but I was immediately welcomed in by a combination of residents, carers and staff. But I hesitated, as my eyes searched the small crowd of people sitting around the ‘bowling alley’, looking for Anthony and, as I stood at the doorway, and the woman in charge began to finish the session, I saw him in the far corner, sitting in one of the chairs on the opposite side of the room. He didn’t see me and, as I waited for the bowling session to evolve into afternoon tea, and those residents who could walk vacated their chairs to sit at a long table that had been set up, I watched him for a few moments before rushing up to kiss him and help him get to the table.

In those few moments I saw what other people see – a big man, slumped in a chair with a look of such blankness on his face that, if you didn’t know him, you would assume he had utterly lost the plot. You would walk past him assuming he was beyond communicating with. You might give him a glance of pity and keep walking, not noticing that he turned his head just a fraction to see if you were someone he knew. I read in his expressionless face such a look of undisguised sorrow that I wanted to run at and through him like a ghost-angel and turn around and find him back to the way he was. I also wanted to run away, to sob, to smash the room up.

Instead, I joined him for afternoon tea with a group of other residents, many of whom are from the dementia section. Ants is in the high care section but the dementia section is next door. I shared some chitchat and chocolate with the residents, carers and volunteers as I sat close to Anthony, who gripped my hand in his and who couldn’t stop looking at me. Then I helped him back to his room and settled him in (with the help of a walker contraption which he is now supposed to use instead of the walking stick).

We then had our usual discussion about coming home – him saying how he wanted to come home for the day/night, and me saying he had become too heavy for me, and him saying he could try harder etc. Then, just as I was about to begin yet another explanation as to the why of our predicament, Anthony began to yawn and yawn and yawn. Every time I reached a point of extreme eloquence he would yawn again. Finally, I said, “Am I boring you?” And he said, “You are a bit.”

I laughed all the way home!

So here is cheers; I have decided to have a glass of red wine.

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Red wine

I am a beer girl myself but Anthony prefers red wine. I remember when we’d go out to lunch or dinner, the waitress would always give him the beer and me the wine and a bit of laughter would be exchanged before we swapped drinks.

This afternoon, I decided to do something different and go see Ants at 5pm instead of earlier in the day. I rang him beforehand and he answered the phone (a miracle in itself!) and I said I was coming in to have a drink.

It was WONDERFUL! I now think this might be the best time to visit because the atmosphere is more mellow than the flurry of daytime. I took the bottle of wine into his room and poured him a glass and I opened my beer and we had a drink together, laughing and talking and then his dinner was brought in and I helped him with that a bit and then I had to go, and he was fine!

Thank you, red wine!

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The grumpy dreamchild

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The dreamchild

During the uncertain years before Anthony and I were engaged, I had a very strange certainty that twirled around in my mind, and whirled around in my stomach. So, one day, I sat down in my little bedsit and wrote about our son-to-be. I sent the poem to Anthony:

THE DREAMCHILD

He waits in a misted capsule

At the corner of my mind

And my thoughts scatter

Through him

Warming cooling him wrapped

A wisp

A fingerbreath of being peering through

Door ajar

A bloodlight outline here

Out of veiled velvet space

The colour of him blinked

Inked in jagged clear

An extension of you

Joined at this corner of misted mind

Seated crosslegged child

A particled preconception

Of something certain

And certain now he waits

For you

His strange cry smiles sunwashed

Into the beating

Beating silence marking time

Timeless

And silence like blue blue air

Sponged cool

His patience a single crimson flame

Poised

Dancing pivot

Of something certain

And certain he waits

Waiting now

We wait

For you

He waits at the corner for you

My child to be

And a few years late, the dreamchild turned into Ming!

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Sorrow is not as scary as it seems

Okay, in case it isn’t already obvious from recent posts on this blog, I am/we are experiencing sorrow due to my husband, Anthony’s physical and mental deterioration (courtesy of Parkinson’s disease). Ming, our son is also experiencing sorrow but from a sensible distance and that is fine and understandable.

So the bulk of this sorrow is mine alone – of course it is and I can’t, and don’t, expect anyone else to take it on because why should they? All of our friends and family have their own lives, their own joys and challenges and, sometimes, their own personal sorrows.

Even Anthony himself doesn’t feel the intensity of sorrow I feel and that is a good thing – a wonderful thing. And, as for me, this is my own deep sorrow that cannot be alleviated by invitations to dinner or movies or lunches or all of those suggestions from my beautiful friends, because this sorrow is not self-indulgent – it is a simple reality and it is inescapable. It doesn’t plunge me into a pit of despair; it just is and it somehow stills my soul.

This kind of sorrow doesn’t want or need cheering up; it doesn’t need distraction; it needs to be felt in its entirety, to be embraced and acknowledged and never avoided. It sits on my shoulder like a half tame bird who might fly off at any time – unpredictable.

Sorrow needs to be faced without fear and, strangely perhaps, it also needs to be embraced, accepted, absorbed and, for me, this is (despite the openness of this blog), deeply personal. I need to do this sorrow thing by myself. So for my beautiful neighbour-friends who care enough to want to rescue me from this sorrow, please let me be for awhile – let me figure it out by myself because I know that I can and will.

I am no longer afraid of sorrow.

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When life holds its breath

When life holds its breath

And the rubbish bin hasn’t been emptied yet

And the dishes haven’t been done again

And you hope for the unthinkable

That you will only be able to breathe again when he can’t

When your friends either overwhelm or discard you

When your family pities you and can do nothing to help, no matter how hard they try

You can always smash the lung balloon of life and make it breathe again

Or not

You can remember every single moment of your life with the person who is dying

Loud, boisterous parties in the kitchen with the stereo blasting

Discovering little bits of each others’ stories like drops of sweat or dew

A single perfect camellia

A cheeky half moon

A baby, now grown as upright as a karri tree

A child who doesn’t remember, but knows his father was not always as ill as now

A teenager who doesn’t remember our holidays, our joy, our frivolity

When life holds its breath

All you can do is wait for the inevitability of death

And hope the slow motion can be fast forwarded in order to skip the bad and boring bits

So that your own breath will come back

So that things will not be endlessly paused

A story with a definite resolution

A bird dead or alive but not dying, not dying

When life holds its breath

You have to tap it on the shoulder

Make it see what you see

Give it mouth-to-mouth

Kiss death, kiss life

Brandish humour like a sword

Overcome fear with love

Embrace the influx of crows

Stop wondering why

Stop crying and crying and crying

Take the white peacock feather from the ground and put it behind your ear

Wrestle the dreams of falling by becoming a giant

When life holds its breath

You have to make sure you can breathe for yourself

You have to hold the hand of your dying husband

You have to candle yourself into a glowing smile

You have to flap your wings like an angry gander with no tomorrow in mind

You have to remember and love all of the people you once knew who were dying and you did nothing

And understand the why of the fear of impending death

The loneliness of now and the absence of then

When life holds its breath

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A letter of thanks

I have decided to write a letter of thanks to the wonderful staff at Wattle Hill Lodge so that they know how much they are appreciated. This is a first draft!

A letter of thanks to all staff looking after Anthony

Thank you for being so kind and considerate, way beyond the call of duty.

Thank you for being so gentle with Anthony, for liking him, for talking to him and listening to him.

Thank you for tolerating my uncertainty and ignorance of various rules, like signing in and out, coming in when there was a gastric outbreak, forgetting to fill out the satisfaction survey.

Thank you for your friendly smiles and greetings when you are rushed off your feet.

Thank you for putting up with my phonecalls to you when I can’t get through on Anthony’s phone.

Thank you for not minding our son Ming’s loud cheekiness.

Thank you for telling me that some of Anthony’s clothes were a bit shabby, to bring him socks that had treads on them, to bring him long pants (which he has always hated, but is now okay with).

Thank you for not minding when I accidentally interrupted your lunch breaks, or handover, or couldn’t remember the code to get out of the door.

Thank you for accepting that I can’t sew so all of Anthony’s clothes are labelled with a texta.

Thank you for not telling me to get lost when I wanted to help you help him with the toilet.

Thank you for so quickly realising I was not his daughter.

Thank you for telling me how disappointed Anthony was when I altered arrangements to bring him home.

Thank you for adjusting his phone, ringing me on his phone, recharging his phone when it was flat.

Thank you for making him feel safe, secure and fine at night now.

Thank you for tolerating the various doctors’ alterations of medications.

Thank you for the fact that Anthony thinks/knows you are all wonderful.

Thank you for being so kind to me too.

Thank you for not noticing that underneath my smile, my heart is ripped apart and the floor of my life is covered in the blood of loss.

Thank you for telling me I shouldn’t be lifting Anthony on my own.

Thank you for telling me that you had also noticed he was becoming more confused.

Thank you for talking to me, chatting to me, making me feel normal – making us feel normal – in a comfortable, cup-of -tea way.

There are so many more thankyous to you guys. I used to be an enrolled nurse and I mostly worked in nursing homes or with multi-handicapped people, so I know what you are all having to do to help Ants as he deteriorates, and I salute you.

So, thank you from my heart – all of you. I haven’t mentioned names here because I don’t know everybody’s names yet but I will work on that.

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‘The Happy Wife’

Today I met some friends for lunch at a place called The Happy Wife.

I have been there before and the name of this little restaurant is an interesting thing to discuss. It could be assumed, I suppose, that it means that a happy wife is one who is out to lunch rather than making lunch? I don’t know. Anyway, the place has taken off like a rocket ship and is very popular.

After lunch, I went to see Anthony and spent a couple of hours with him. He didn’t bring up the subject of coming home for the weekend, so I didn’t either, even though I was ready to say it is now impossible. He was more physically mobile but also a bit more confused (the hardest part of this confusion is he doesn’t think he’s seen me, or spoken to me for ages, so a whole lot of yesterdays have been vaccuumed into oblivion and I have to convince him otherwise).

He wants me to get our bentwood chairs fixed and even gave me someone’s name so I am going to do that and all of that made sense, but in the next breath he asked what had happened to all of our furniture, so our conversation was a mix of real and surreal. I asked if I could bring a couple of pictures in and a clock (the cuckoo clock I bought him for Christmas) and he said yes. A few weeks ago he wouldn’t agree to anything from home being brought in so I didn’t because I didn’t want to hurry the sensation of permanency for him and with good reason because today he said it again: “I didn’t think this was going to be permanent.”

I decided not to respond to that and instead said, “How come you are so good at grimacing these days but you can’t grin?” so we bantered a bit. Of course I didn’t tell him I had been out to lunch at The Happy Wife because it only hurts him to think I might be doing something unnecessary when I could be with him.

I was such a happy wife.

Note: Yes, yes, I need to get a scanner! On the other hand, a photo of a photo can make a handful of years look like aeons and that’s what it feels like sometimes. Look how happy we were.

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