Grief | jmgoyder

Whispers

by jmgoyder

“If you listen quietly enough life will whisper its secrets to you”
― Rasheed Ogunlaru

Anthony’s dysarthria is getting worse. Dysarthria is difficulty in speaking and, in Parkinson’s disease, is caused by the vocal muscles not working properly. Except for occasional unwhispered flashes of eloquence (usually in response to visitors or staff talking directly to him and waiting for an answer), his voice now is mostly a whisper.

This means that over a period of hours, Ants and I may only speak a few sentences and that it is mostly me doing the talking. Sometimes I have to put my ear right next to his mouth to hear what he is whispering and often I still won’t understand and he will shake his head in resigned frustration.

At other times, Ants may form meaningful words into sentences that to me are indecipherable. As a result my mind-reading abilities are improving and usually I will be able to figure out what he is saying. Sometimes, of course, the sentences do make sense syntactically, but not semantically, for example when he asks me to move the calves outside his window.

It may be a long way off, or it may be soon, but eventually Ants may not be able to speak at all so I am preparing myself for that possibility by writing down the things he does say as well as the things that I say that trigger his half-smile. I am a bit scared though because his facial expression is mostly pretty frozen (another PD thing) so it may be hard to ‘read’ him.

The contrast between this whispering Anthony and the loud, bellowing, laughing person he used to be is acute but I refuse to allow this to be heartbreaking, and I refuse to revert to the fug of despair I felt so long ago that I hardly remember its blah. There is nothing heroic about this newfound attitude; it’s a matter of pragmatism and survival I guess.

There was a period of time way back when Anthony’s inability to smile spontaneously, coupled with my down-in-the-dumpness, made my visits to him sad and difficult and I would come home in tears. But now it is so wonderful because I look forward to seeing Ants, almost like the teenager-in-love I used to be, and evoking this new half-smile from him easily now, and often, is fantastic fun!

That half-smile highlights our days and Anthony’s whispered “I love you, Jules” makes me feel like the luckiest woman in the world. I so admire his resilience, acceptance and unsadness in the face of this horrible disease. His fortitude and courage continues to amaze me. He is not just my hero; he is a hero of Parkinson’s disease and I salute him.

And every whisper is a weapon against the impending silence.

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Feb 24

A sublime sense of space
by jmgoyder

Dina, from Chaos to Clear https://www.chaostoclear.com.au/gallery.html came over this morning to help Ming tackle this:

Some of the stuff in this particular area was paperwork that I either didn’t know what to do with, didn’t recognise, and didn’t even remember putting there. But most of it was Ming stuff – lego (and lots of it!) brio trains and tracks, and a whole lot of other ‘things’ from Ming’s childhood. As this was Ming’s first experience of decluttering his own stuff with Dina, it was interesting to see his initial reluctance transform into a very healthy ruthlessness and we filled four garbage bags and two boxes with rubbish to be taken to the dump – wonderful! It was also quite moving to see what he was still sentimental about:

While this was happening, I sorted all of my plastic containers, got rid of all my old cook books and only put the Aga cook books in the kitchen drawer, and put all of the paperwork we found into the filing cabinet that is now functioning as a proper filing cabinet thanks to Dina’s labels. Bliss!

For me, the sense of space that has been created is the most wonderful thing! I have never known a cupboard, shelf or drawer in this house to be empty before so I am having a lot of fun thinking about how I can use these empty spaces. Wonderful!

And this is the beauty of Dina’s service; she helps you to cull, but she also helps you to put the things you want to keep back into the new spaces. Dina is way more organised than I will probably ever be, but she has given us such wonderful help and tips and sympathy!

She has also given us her friendship and is even happy to come and help me take Anthony out on occasion. Thanks again, Dina, for your tact, efficiency, respect and empathy. You are a wonder!

We even have a box of stuff to go into the nursing home.

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Feb 23

The loop of loss and longing
by jmgoyder

Tonight I came home from my shift at the nursing home (which is now from 3-7pm) feeling terribly sad for one of the residents, B. She had been taken out by her daughter for fish and chips with some of her family but when she and her daughter returned, they were finishing a conversation which must have begun on the drive back and B, referring to her deceased husband, was saying things like, “So R is gone is he? I see … And I can stay here can I?” The grief and confusion in her beautiful face was a stark, mottled blush and her eyes seemed to be looking inward, grappling with the enormity of her bereavement. We – the staff – sat her down and reassured her and her daughter left.

I was already sitting at a table with two other residents, looking at magazines and a bird book, so B made a fourth. She was uncharacteristically quiet and still. I gave her a magazine, a hug and a cup of tea and she eventually said, “It’s hard when you lose someone and you’re all alone.” I squeezed her hand and said, “I know how it feels a bit, B, because my husband is in a nursing home.” With that she looked at me with eyes full of empathy and she enclosed my hand in both of hers. “I’m so sorry darling, that must be terrible for you.” Her sympathy amazed me since she had just heard about her husband’s death for the first time (of course it is not the first time in reality) and she seemed to be in a bit of shock.

But, less than 15 minutes later, as B finished her cup of tea, she asked the same questions she asks over and over and over again, “Do you know where is R? I need to be getting home. Can you give me a ride? He’ll be getting worried won’t he?”

Most staff go with the flow and reassure B that R will be here soon, or that he said it’s okay for her to stay here for the night. It is sometimes very hard to know what to do to comfort B because she is constantly on the move, ready to go home. She is mobile, articulate and always immaculate, but so terribly confused and anxious. A couple of the staff will gently remind B that her husband isn’t here anymore and she will be shocked and grief-stricken but within minutes will have forgotten this and will begin again to ask where R is.

I wish I could figure out how better to comfort this woman who constantly asks for her deceased husband; it’s as if she is stuck in a never-ending memory loop of loss and of longing.

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Feb 16

Dreams
by jmgoyder

I have various versions of the same dream once or twice a week. In the dream Ants and I are on a holiday somewhere, a long way from home, and a long way from the nursing home. We are either at some sort of luxurious resort or at a wedding, and familiar family faces come and go from each dream version. Everyone is always aware that Anthony is very ill and often he is in a wheelchair. The strange thing about this dream is that its evening is suddenly punctuated by the horrifying fact that I have forgotten to bring his many pills and it’s too late, and too far, to go back and get them. But then an even stranger thing happens. He gets up from the wheelchair and walks around talking and laughing and socialising and I realise he doesn’t need the pills! Another recurring dream I have is that we are on the brink of getting married but he gets cold feet and the wedding is called off and I am broken-hearted. Whenever I wake up from this dream I am filled with relief that it was just a dream but then I look over to his side of the bed and am hit with the jolt of his absence. On these days I usually go into the nursing home earlier than usual. This morning Dina (my decluttering friend) and I cleared our fourth room – a little room at the back of the house that I once used as an office. It was filled with books, papers, some of Ming’s ‘stuff’ (which seems to be in EVERY room!) and I didn’t think we’d even get to the filing cabinet which was also full of bits and pieces. But we did! All legal documents are now in one place; jewellery in another; photos in another; and Ming’s bits and pieces in another, ready for him to sort out with the help of Dina. Now a little myth I need to dispel: Dina does not chuck stuff out; she simply hands it to me and I make the decision as to whether it’s worth keeping or chucking. And I am getting very good at chucking! Periodically she asks (she is so considerate!) if I am okay which is a fair enough question as some of the bits and pieces we find plunge me into a kind of nostalgia, but it’s mostly a happy nostalgia. If it isn’t, it goes in the rubbish bag – wonderful! As we declutter, categorize and cull, my mind unfurls its tightly-wrapped knots of confusion and clarity seeps back in.

Interestingly, I now have another recurring dream. In this dream, the house returns to the way it was before Anthony became so ill: spotlessly clean, tidy, organised and beautiful. But, for the first time ever, it will be my house too – less cluttered with ornaments and free of hoardings. I could never do this kind of thing when Anthony was home because he was sentimental about everything, even his father’s old dressing gown! And he wouldn’t like what is happening now but he doesn’t know so it doesn’t hurt him. I would never hurt him. And, thanks to Dina, this dream is coming true.

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Feb 10

From panic to pause….
by jmgoyder

For the last few months I have spent a lot of days with Ants in his room at the nursing home, just watching dvd series like Downton Abbey; The Bridge etc. Ants loves anything that has an historical slant so this has been a great way of spending time together.

However, some of these movie afternoons are interrupted by staff performing ablutionary tasks, or simply moving Ants from a wheelchair into the easy chair. These interruptions are sometimes difficult and complicated, but Ants is treated with respect and, often, affection. Phew!

If I am there, one of the things I do immediately is to mute the television because I have never forgotten how one of Anthony’s many doctors explained to me that people with PD cannot focus on two things at once. So, if carers are trying to get him to stand up, but the TV is blaring news about the latest ghastly situation, he freezes mid-stride, because all of these sensory experiences are crashing into each other and he cannot focus on walking.

Whenever I get a late-night phone call from the nursing home (not very often thank goodness!) the carer will help Ants to talk to me on his own phone (which he very rarely answers now because he has forgotten how), this is how the conversation goes:

Me: Are you okay, Ants?
Ants: When are you coming to get me?
Me: I’ll be there soon, Ants. I love you and you have to stop panicking. It’s all okay and you are in a nursing home with lots of people looking after you!
Ants: But I just want you. When will you be here, Jules?
Me: I’m on my way, Ants- I love you so much!

A couple of years ago I used to race into town to make sure Ants was okay but, after several times of finding him asleep, I stopped panicking, started pausing, and the whole pause thing has somehow killed all of the panic.

So now, when I feel the panic creeping into my scalp, ankles and elbows, I stop everything that is bothering/torturing me and I just PAUSE!

So, despite the new-agey sound of this, there is a pragmatic outcome I think when you put PANIC on hold in order to Pause, you can get a better perspective. I think!

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Feb 9

I can’t do this until I do that!
by jmgoyder

You know that feeling that you can’t do something you need to do until you do something else first? For example, here are some conversations with myself over the two-and-a-bit years since Anthony went into the nursing home:

– I can’t have people visit until I clean the house from top to bottom;
– I can’t go on a diet until I have eaten all the cheese;
– I can’t sort my old paperwork until I have sorted my new paperwork (well I think I have a point there!)
– I can’t turn over a new leaf until Monday because Monday is a good day to turn over a leaf, or perhaps Sunday if the date is not an odd number (a little bit of OCD?);
– I can’t do the washing (laundry) until I find it;
– I can’t get back in touch with that old friend until I find all of her emails to me that I didn’t answer, and answer them.
– I can’t get a decluttering service to help me until I do some preliminary decluttering by myself (yes, this has worked to some extent);
– I can’t make healthy smoothies until I have the ingredients to make healthy smoothies with;
– I can’t write anything new until I sort out all my old writings (in case I find something potentially brilliant that has publication potential);
– I can’t blog until I’ve read everybody else’s blogs;
– I can’t have fun until I have solved all of the problems in my life and the world;
– I can’t think new thoughts until I have figured out all of the old thoughts;
– I can’t breathe easily until the person I love can breathe easily too (literally and figuratively);
– I can’t cook a beautiful meal until I feel hungry enough to do so;
– I can’t quit my old bad habits until I develop a comprehensive list of goals for new habits and that will take me a year or so;
– I can’t go back to work in any capacity until I am happy;
– I can’t get up early in the morning until I want to get up early in the morning;
– I can’t re-friend that person until I figure out why we became estranged;
– I can’t pick the figs until I figure out how not to be bitten by hundreds of ants;
– I can’t read this novel until I’ve read that novel….

These excuse-ridden conversations with myself go on and on and on and, even though the above conversations are somewhat tongue-in-cheek, all of the ‘can’ts’ and ‘untils’ have culminated in a great, big “I give up!” feeling of absolute hopelessness.

I kind of figured this out this morning as Dina (from Chaos-to-Clear) helped to declutter the back veranda which was crowded with boxes and crates of Ming’s baby toys, legal documents, empty diaries, sentimental quotes, letters, postcards, a lot of photos, and a multitude of bits and pieces. She and I could both see how I had obviously tried from time to time to organise all of the ‘stuff’ but I had to swallow my embarrassment at all of this spider-webbed clutter!

This is a photo of before Dina arrived:

It took around four hours to clear/sort/discard/box up/categorise most of the veranda stuff and at 2pm we stopped and I looked at what we had done. The feeling of freedom and elation was indescribably good. And then that feeling was trumped by the feeling of hope!

And it is only now that I see, in retrospect, that I must have been in a state of absolute despair, to let the house and its contents get the better of me in terms of clutter! Of course this was not just because of Anthony going into the nursing home (that was terrible enough) but all of the ghastly other stuff that happened in those two blurry years – Ming’s surgery, my mother’s broken bones after falling twice, the car accident which I can hardly bear to think/talk/write about despite the fact that everyone survived.

I have written about all of these things in past blog posts but I am reluctant to re-visit those posts because….

– I can’t re-visit all of this painful stuff until I learn how to stand up straight and tall and and smile at the monster!

Note to Ming: I promise not to go to the dump with the rubbish until you get back from your holiday. We shook hands about this so please trust me! (This deal he and I made is another story!)

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Feb 8

The thank you thing
by jmgoyder

It struck me this afternoon, during my shift in the dementia house, that people with dementia don’t get thanked very often. After all, they are the recipients of care so are always saying thank you to us (family/friends/staff).

B, who is always wanting to be busy (because she was one of 12 children and their mother was a perfectionist in every way) is constantly anxious and quite bossy to the other residents sometimes. Her agitation is heartbreaking and, as she is extremely mobile and physically fit, she sometimes challenges the patience of staff.

After dinner tonight I threw the old towels I’d brought in the other day onto a table (an idea suggested by another staff member) and B proceeded to fold them all, meticulously. I helped her with a particularly big towel and, once we had finished, I thanked her rather profusely.

Me: Thank you so much, B. I couldn’t have done this without you.
B: Oh darling, anything I can do to help. I was one of 12 and my mother was a hard worker. Everything was starched and cleaned and perfect, washed, ironed, starched. And we had to get the littlies to bed, changing nappies, cooking tea.
Me: I think you must take after your mother, B.
B: Oh no, I could never do what she did. Do you want me to help you with the dinner, love?
Me: I think I can manage tonight, B, you just sit down and I’ll serve the soup.
B: What about this old lady here?
Me: Just keep her company, B!

I probably haven’t written this very coherently but my point is that when I thanked B for helping me with the folding, she looked at me with her beautiful, bewildered expression, then grasped my hand and said, “So what do we do next?”

Me: I thank you, B!

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Feb 7

Mystery solved!
by jmgoyder

The other evening I finished work in the dementia house at 7pm (new schedule) and headed up to Anthony’s room in the high care section to say goodnight. As I am not usually there so late, I was surprised to see that the hoist was in his room and that he didn’t have a shirt on. His dirty shirt was off and his clean shirt was on the side of his armchair so I put the clean shirt on him and chucked the dirty one in the laundry basket in his bathroom. Then I put his favourite blanket on his knees and we had a chat.

Me: How come you didn’t have a shirt on?
Ants: I was in a fight.
Me: Who with?
Ants: Those kids again! They tie me up.
Me: See this thing, Ants? It’s a hoist and the nursing staff need it to lift you up and to get you into bed.

He wasn’t too anxious but I could see that he had been. So I kissed and hugged him and said my usual goodbye of “Just going up to the shop to get something for dinner”, and turned the television onto the news which he loves.

Then I left. Usually I say goodbye to staff who are around but they must have been busy somewhere else so I let myself out and drove home.

The following day, Anthony said, “I have to tell you something” but he couldn’t articulate anything that I could understand to begin with, then ….

Me: Were you in another fight?
Ants: Yes!
Me: What happened?
Ants: Those boys tied me up again.
Me: I’ll go and speak to someone about this, okay? Back in a sec.

I went to the nurse’s station and asked M if there had been an incident last night and she said Anthony had become aggressive towards staff trying to get him ready for bed so they had had to leave him alone for a bit. Then she looked at me, her expression full of compassion.

M: It’s okay, darl, he settled down.
Me: He seems to think he is in some sort of boxing ring every night. He is terrified of the hoist; do you think that’s it?
M: Okay I’ll tell the staff. One thing we couldn’t figure out was how he got into his clean shirt.
Me: Oh I did that on my way out.
M: Well that’s a mystery solved!

The following day, during my time with Ants and then my 3 -7pm shift, a couple of staff approached me about the previous evening’s mystery, i.e. Anthony had become feisty when various different carers tried to get him ready for bed so they had left him alone for awhile. Not long after that, they came back into his room to find him dressed for bed and with the blanket on his knees, and calm. Nobody could understand how this could have happened because nobody had seen me come and go, so it had mystified one and all until I clarified that it was me who put his shirt on!

Since then, numerous staff have told me the mystery story. You see there is no way anymore that Anthony can put his shirt on – no way at all. His Parkinson’s has pretty much shut down that kind of ability.

I guess the best thing about this experience is that I now know for sure that the carers in this nursing home really do care about him, and, now that I am a staff member too, I get told stories of how he is when I am not there.

As one of the carers said to me yesterday, “I knew straight away that it must have been you who put his shirt on.” Then she said, “You know, he is absolutely besotted with you. I tried to flirt with him a bit and he sort of brushed me aside and said that you were the love of his life.”

I think it is delightful that so many staff are still laughing at the mystery of the shirt and, today, I will tell Anthony the story too and he will SMILE. And I will laugh all over again!

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Feb 3

“Chaos to Clear”
by jmgoyder

“Chaos to Clear” is the name of a local organisation I discovered last week. The lovely woman, Dina, who is the boss/instigator of this innovative organisation, came out to the farm last week for a preliminary glimpse of the chaos and, much to my relief, told me that she had ‘seen worse’ which I found very reassuring!

In order to give Dina a bit of context, I described to her what I think must have happened over the last three years since Anthony moved to the nursing home in December, 2011, just after Ming finished high school. The first part of 2012 was consumed with Ming’s spinal surgery, blurry memories of adjusting to Ants being in a nursing home, enormously difficult efforts to bring Ants home as much as possible, and the decision to resign from my job as a university lecturer of nearly 20 years.

So, in retrospect, that first year was a blur of sorrow during which I probably just functioned in a low-ebb kind of way. During the second year, I began to lose control of the heartbroken house because I just didn’t love it anymore. I stopped winding Anthony’s beautiful chiming clocks; I stopped watering his ancient rose trees; I stopped ordering kerosene for the Aga, stopped getting wood for the fireplace, stopped many of the rituals we had in place (like polishing the silver and brass) because Ants wasn’t here anymore so nothing seemed to matter much. I think that those two years when I lost the plot in terms of organisation of the house was further problematised by my reluctance to get rid of Anthony’s hoard!

And now we are into the fourth year of Anthony’s life in the nursing home, my life out here on a farm he adored, and Ming (just turned 21 and managing the upkeep of the farm to some extent and employed full-time at a popular restaurant in our closest city/town), has become a life I don’t want any more.

I only told Dina little bits of this sob story as she and I decluttered the pantry (and that was a fantastic experience of culling!) But, in telling her these bits and pieces, it made me realise how the fact that Anthony no longer lives here in his own house, with his own things, has prevented me from de-cluttering his hoarded goods.

This morning, I got up really early to clear the floor of the pantry, vacuum and mop it before Dina even arrived! I got the impression from her that she had wanted to de-clutter the floor – haha too late – and I told her she had inspired me! We then worked together – Dina, Ming and me – to classify everything as either (1) rubbish; (2) to be given away; and (3) to be valued by an antique person.

In just three hours, a pantry was transformed from a kind of chaotic junk room into a place of organisational bliss! There were a few glitches, of course, because Ming wanted to check every single bag/box of rubbish I had thrown onto the ute to take to the dump tomorrow. To his credit, he did find two unopened toothbrushes and a brass toast rack, but he also dumped things like banana holders, a multitude of rags, crappy old boxes of crappy old crap, and and some cracked china.

We also found a magnum of unopened Bollinger from before I was born!

Thanks so much, Dina, for helping us sort things out!

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Feb 1

Missing Missy!
by jmgoyder

Well I miss Fergie too but Missy was definitely the most mischievous of the two. No matter what yard we put her in she Houdini-ed her way out of it almost immediately. As a result, we got into the habit of letting all of the dogs (our two and the two we were dog-sitting) out for much of the day.

So, the other day, when Missy was conducting an aerobics lesson with Fergie, Blaze and Jack, I drove up to the local shop to get some groceries and returned 15 minutes later
to
find
that
they
were
GONE!

Not Jack and Blaze; they were resting on the front veranda and initially I didn’t fret about Fergie and Missy having been assured by their owners (my nephew and family) that they would not run away. But, after about half an hour, I began to wonder where on earth they were so I did a preliminary search of the acreage around the house, including the pond,
with
a
growing
sense
of
absolute
DREAD!

Two hours later I was in a state of panic and texted Ming who was at work but he didn’t answer so then, with a lump in my throat, and tears in my eyes, I messaged my nephew’s wife and admitted that I had somehow lost their dogs. Then I went back outside to continue the search. “Where are they, Jack? Where are they, Blaze?” I kept asking our rather subdued dogs but of course dogs can’t talk so they just looked up at me sadly.

When I got back inside, having given up, and having resigned myself to the fact that my nephew, his wife, and their two small children would NEVER forgive me, I checked my messages and was
overcome
with
a tsunami-like
sense
of
RELIEF!

“It’s okay – they’re just across the road with J and P” (my nephew’s parents).

OH! THANK GOD!

An hour or so later J and P returned the little rascals and Missy recommenced the aerobics lesson from her preferred position on the table on the front veranda. I have never seen a dog with such kangaroo-like abilities. With gravity-defying agility she simply springs upwards and lands on whatever happens to be higher than the ground. Extraordinary!

But she was a bit tired after her adventure across the front paddock and over the road, so she concluded the aerobics lesson in relaxed mode.

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