You won’t get two legs out of that

In less than four months, the change is profound. Mum is wasting away bit by bit. A necrotic wound on her hip is slowly rotting. In April her hip broke and was repaired. Since then she can no longer walk, she is incontinent, she hardly speaks and when she does she seldom speaks in a context, she is bird thin, and she sits, day after day, parked in front of a fake wood fire and a television screen.

 

She recognises dad and sometimes she knows who I am. She lives in tiny, small world, muddled and foggy. Sometimes we feed her meals to her. She is better using her fingers.

 

She picks at scabs, she folds and unfolds the napkin, she is bored and sedated. She is no longer in our care and we have to put our trust in this untrustworthy system. They mush her drugs up in apple puree. When I ask what is in the mush the carers are secretive. “Coloxyl and Panadol,” she says when pushed but everyone is so sedated on this particular Saturday morning that I suspect there is something else in the mix. On the weekends there are less staff and the residents seem less distracted.

 

Dad and I are visiting. We have joined her by the fake fire.

She looks at me, a puzzled expression on her face.

“You won’t get two legs out of that,” she says.

Dad has no idea what she is talking about but I do.

“Are you sure,” I say, “If not I think I can get some more material.”

 

We are transported back to the lounge room. I have brought my sewing machine down to Geelong and we are about to have a sewing day. We are on the floor on our hands and knees. Material has been folded down the centre line and a pattern is laid out on it. We haven’t pinned it yet. Mum is moving the pieces, and refolding the fabric in an attempt to get a pair of trousers out of fabric that is too short. I haven’t bought quite enough.

 

Mum was brilliant at this. She would always work out a way to make the pattern fit. When we sewed together she always did the hard bits: collars, cuffs, setting in sleeves.

 

Yesterday my daughter came down to visit me. She brought with her the fabric from Africa that she bought when she was there last month. She asked if we could make some cushion covers with her.

 

A little bit of mum alive and well.

A Dilemma

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It has been two months since mum fell and broke her hip.

When we discussed options with the medical team at the hospital, the only real option was surgery to mend her hip. This was palliative surgery. It was unlikely that she would ever bear weight on the leg again and so, it was explained to us,  the surgery was to prevent mum from being in pain. At this stage of her dementia, she was too well and alert to just offer her pain relief rather than surgery. Down the track ‘though, it would be an option.  This was a difficult conversation and we made sure that we were all present, her three daughters and dad, so that no one person could be held responsible for the outcome.

Nursing home care was the only option for mum but we all felt the weight of guilt at leaving her there. She went in feisty, defiant, ambient, continent and alert. She was immediately labelled as difficult and hard work. Two months later she is passive, drowsy, incontinent and confined to a chair. How much of this is the natural progression of Alzheimer’s?

Last night the nurse on duty gave mum her evening medication mushed up in pureed apple. Mum took the medicine from the spoon like a baby.  Out of curiosity I asked what she was taking. Endone and Panadol. She has this combination of pain relief three times a day. My concerns go a bit like this: Should she be on this level of Endone? Should she be on Endone at all? (The surgery to repair her hip was palliative and she should not still be experiencing pain bad enough for this amount of Endone). Is it chemical restraint? Is it better for her to be in this state of non-comprehension or should she be allowed to be more awake and aware? Are we being kind to her or cruel? Should we leave all decisions up to the staff and medical team at her nursing home or should we advocate for pain relief that is less dependent on medication; such as massage, diversion, hot and cold packs? Aged care, like everything else, is budget driven. What is our role as family now that her care is in the hands of others?

It is so hard to visit now. I punch in the code and open the door to the dementia unit. The smell of pineapple scented disinfectant is overpowering. Mum tackles her dinner – sandwiches, soup, raspberry fluff, milk and cup of tea – all served at once. She takes a bite of sandwich then a spoon of the fluff then she tries to take a spoon of sandwich. Realising this is not going to work, she goes back to the fluff. She is propped up uncomfortably in a chair and parked in front of the television. The volume is up high. It is an old Western and no-one is watching it. There is nothing to talk about. I just sit with her and tune in to the film.

 

 

 

Down to the River

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My mother, as her situation got more and more unbearable, often threatened to go down to the river and drown herself.

To this dad’s reply never changed.

‘Don’t be ridiculous. You wouldn’t even know how to find the river.’

 

I am in the queue. My expected wait is over 30 minutes due to high demand o customer service officers. The music loops over a few bars of Mozart and my dog howls as the violins leap into the high notes. I have headphones on to stop this. Every so often the looping bars are interrupted by a woman who tells me I can simply go online to my.gov.au and find what I am looking for.

 

I am making the call for my 88-year old father. He is blind. My mother’s Alzheimers got too much for him to manage and we have just put her into a nursing home and paid a $300.000 bond. To do this my father sold shares and now he must report his new asset position to Centrelink. It is a requirement. I did this for him last week. The customer service officer needed to know what shares he sold and the number and the amount he received. My dad says,

‘My assets have been reduced by $300.000, isn’t that enough information for them?’

 

Centrelink has sent him a document listing his new asset position and we cannot make sense of it. A note at the end of the figures says,

If any of the above figures are incorrect please contact us as soon as possible.’

 

I have worked carefully through the figures and none of them match those on his bank statements. We cannot work out how they have calculated the value of the shares that he still has. To sort this out, I took him to his financial adviser and even he was dismayed when he looked at the document we received from Centrelink.

 

‘It isn’t even written in accounting language!’ he said.

 

He printed out copies of the shares and an up to date statement of his holdings. We called in on his banks and got current statements. All this running around: My father can do nothing on line. Even making a phone call is almost impossible for him

Yesterday, when I dropped my father at home after our trip into town to get the documents and the information we needed to make this call today, he said,

‘I don’t know why they make it so hard. I think they want us to just drop of and not bother them.’

I said,

‘I think they just want you to go down to the river.’

Breaking up

A powerful dream wakes me up.

I am observing a woman who is being punished by her husband. This is a regular thing and she tolerates it. She takes it with great dignity.

He grinds up a ceramic plate, mixes it with some liquid and makes her eat it. As the ground up plate makes its way through her small then her large intestines she is in great pain. I am reading Gut a book about the digestive system, and I know that the particles will not be digested and that she will pass them. This too will be painful.

The woman and her husband and children want to buy my dog Rufus. We are out observing his behavior and making sure that he will be a suitable dog for the family. They decide to buy him. I ask for one last hug before I part with him. I hug him and realise how much I love this dog. I tell them that they cannot have him and they walk away, angry.

The dream stays with me. I realise that the woman is me and her husband is my partner. Rufus is Rufus. As our relationship moves painfully through its final days, I realise that I have been eating ceramic plates for too long.

Walking the dogs …

I waited until 9.00 and called my parents’ doctor. The day before dad had had a ‘turn’. When he described it to me it sounded like it needed to be followed up. He insisted it could wait until next week when they already had a doctor’s appointment scheduled. I felt it was more urgent. I made an appointment for 10.45 and called him to tell him that they needed to be ready, that I would pick them up at 10.30. He agreed without the opposition that I anticipated.

 

Mum dithered. We were impatient with her. She wandered about, uncertain of what she was looking for; over to the chair where her coat and hat now seem to live, then to the hall stand where she ruffled through some stuff, and then all the washed containers underneath it. Were any of them mine she asked? Did she need her bag?

 

“No!” we urged. “We have an appointment and we need to get going”.

We hurried her into the car. She stuffed around taking ages longer than she normally did. Now I wonder if she knew. If she knew it was the last time she would be at home.

 

The doctor sent us to the A & E room for further tests. She told us to expect to spend a few hours there. She was concerned about inconclusive results on an ECG the nurse ran.

 

In the hospital waiting room, dad told me to get her away from him as she bossed and fussed. Mum kept the men waiting for dialysis entertained. She wandered. “I have been here before” she repeated. “I know this place. I was here last year”. She went into the room where men were hooked up to machines and was escorted out. To pass some time and to distract her, I took her for lunch. She was angry with me and we hardly spoke in the car. At lunch she pulled the waitress aside and whispered to her, “I don’t know who this person is but I think she is related to me. She is a fucking bossy bitch”.

 

We always anticipated that something would happen to change the way they existed at home. This was it. Dad was admitted overnight for monitoring. I rang around and found emergency respite care for her. Emergency care for one night became two then three then we were advised that she should not go home. Emergency care became full time residential nursing home care.

 

Two weeks later, walking my dogs, I fell into conversation with a fellow dog walker. I don’t know his name but we often circle the oval chatting and hurling balls at our dogs. We chat about our daughters, our dogs, our Airbnb experiences. I told him about my latest Airbnb disaster, then I added, that it was made worse as it was the day I put my mum into full time care. It was as if we both knew that each other carried a shared grief as our conversation turned to our elderly parents. His father’s funeral is tomorrow and his mother had just gone into emergency respite pending full time care.

 

We talked about the tears we had both shed over the past two weeks; the hardest weeks we had ever endured. We talked about how our fathers had carried the burden of caring for out demented mothers and how they just ‘broke’. We shared stories of our mothers wanting us to take them home, the indignity of the disease, of holding their clothing and weeping and then at the point where he normally heads off in one direction home and I head off in the other, we acknowledged that we had done the right thing and we laughed about the ‘support group’ we had just started.

Missing mum …

This is a very self indulgent post.

I turned that corner and hit a bleak time and whilst I am trying hard to overcome my fears about the future, I feel very alone.

I called up to see mum and dad. I had scallop pies and stewed quinces for them. Mum was lost and it seemed like she was in another world. She repeated every thing dad and I said. Dad was asking how every one was: my daughters, my grandson, my partner and his daughter. Mum wasn’t even trying to work out who we were talking  about, but asked each time, “who is Elena, who is he, who is she? ”  just to stay in the conversation.

Then she looked at me and asked,

“who is looking after you?”

“No-one,” I said.

Some where in that muddled confused mind of hers … she understood.

Interpreting art

Rius Carson

Rius Carson The Other Side

It was the caravan that hooked me. It recalled a dramatic moment for me.

Between Gisborne and Bacchus Marsh in Victoria is a spectacular stretch of road. It runs along the top of a razor back. When you drive it, you feel like you are on the top of the world. It’s scary and exciting to have so little hold on the earth.

My aunt and uncle did a road trip years and years ago, pulling their 1960s caravan from Queensland to Victoria. On that stretch of road, a gust of wind caught their van and it came away from the car, plummeting down paddocks and into the valley below where it disintegrated into pieces so small that when dad drove us out from Geelong to take a look, there was no trace of it.

Two weeks ago I drove this road and told my partner the caravan story. I was surprised to be reminded of it after such a short interval.

Rius Carson, the artist, spoke about it at the launch. He talked about the stupidity of towing a caravan; of putting possessions in a small home and carting them around. He also spoke about his motivation for the body of work on display that The Other Side belongs to. He had moved to the country from the city and was starting a different sort of life with his partner. They built a house together and then the relationship failed. These works were about coming to a corner, turning it, and finding a whole new set of challenges.

His frank discussion was what turned me from a passive listener and viewer to a buyer. I have just come to a corner and turned it and I am standing at the end of a street that looks terrifying. I am struggling with a new set of challenges. I am 62, underemployed, keeping an eye on elderly parents and living in a city that does not feel like my home, and until the painting, I was miserable. My youngest daughter had just moved out and just like that my life felt purposeless.

But I get it now. It is just another corner like all the other corners I have turned and I just need to get on with it, flip that useless caravan that I am towing around and head down the street.

Quinces

My mother never cooked quinces, so I can only imagine that my love affair with them started in my paternal grandmother’s kitchen. My strongest memories of smells and tastes come from the old house in Rochester. Early memories of ripe peaches on the tree, wet bran, peppercorns and the taste of cucumber and mayonnaise together come from there. And so for now I will allow the peculiar taste and smell of quince jelly to come from her kitchen.

Jane Grigson, my earliest culinary inspiration had a wonderful book called Good Things  and in it was a chapter on quinces. I cooked my first batch of quince paste from this book. Pasta di Membrillo. I peeled, chopped, boiled, drained, mashed and added sugar then boiled the paste until it came away from the sides of the pan and turned a deep burnished red. All the while my hand wrapped in a tea towel to stop the volcano like eruptions from burning me.

Very few years have passed that I have not had a ready supply of quince paste in the fridge all winter and gifted much of my supply to friends. In the years that I have been making it I have learned a great deal.

I have learned that I can make jelly and paste from the same quinces. I have also learned that there is no need to peel the quinces. A Country Women’s Association recipe for boiled quinces instructed to just wipe the fluff off the surface and boil them in a sugar syrup for hours and hours. The syrup then turns to jelly and the quinces can be served whole (and warm) with double cream. This is a magnificent dessert. The best thing I learned was from an early Australian cookbook, that slightly green quinces from the start of the season have a higher pectin content and always make the best jelly and paste.

Until this season I have always bought quinces, when I first see them in the shops, and made paste and jelly.

I wipe the fluff of the quinces, cut them on each side around the core then slice each bit roughly. I cover the pieces with water and boil until they are soft. In another pan, I cover the cores with water and boil them up as well. It is the seeds and peel that produce the pectin. Then I drain off the liquid from both and measure an equal amount of sugar and start boiling it for jelly. For the paste, I mash up the fruit with my bamix and put it in my slow cooker adding an equal amount of sugar. I cook this all day – or until the paste comes away from the sides and is a deep burnished red colour – stirring regularly. When it is cooked I turn it into a Swiss roll tin, lined with kitchen paper and set it in the turned off oven. For the next few weeks, when I use the oven I take it out then put it back in to the cooling oven after my cooking is done. This dries it out. I cut generous wedges of it and smear it on buttered toast or eat it with cheese. Each year it has a taste all of its own.

 

The jelly is ready when it starts to set as it forms drops on the wooden spoon. This is a hard process to describe … it’s a bit intuitive.

Three years ago I started a garden in what was then my back yard. I planted a quince tree. The first summer it just grew. The second season I harvested one quince. This year the tree was covered in blossom in Spring and I have just harvested over 24 big, ripe, bug free quinces. I even left a few on the tree for later in the season. I am so proud of them. I just want to look at them for a while before I chop them up and turn them into this year’s jelly and paste.

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The Team

 

Sometime in the 1970s my mother enrolled in a Council of Adult Education course and made a puppet with Melbourne artist Mirka Mora. I remember having lunch with her whilst she was doing the course and I remember how much she was enjoying it.

I have the puppet she made. Mirka’s influence on its design is very obvious – there is a serious but playful element to it that I think she may have shared with my mother, or at least my mother then. My mother’s creative talent is obvious too. She has painted white flowers on the Mikado-like figure on one side. They are the same flowers that she embroidered on the bunny rugs she made for her grandchildren when they were babies. Her Mikado character has a cheeky grin, his little white teeth showing through partly opened red painted lips. On the other side her harlequin is observant – his lips are sealed, his eyes wide open.

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I have kept this puppet, along with a papier mâché wolf head that my father made for a fancy dress competition my sister and I were in the late 1950s. I remember parading around the hall in West Geelong wearing a Red Riding Hood costume while my sister wore a hessian sack with a furry wolf tail and the papier mâché wolf’s head on top of her head. We were not the winners but we each got an egg cup.

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I sometimes think how lucky I am to have these mementos of my parents. They are curious objects but each in its own way reminds me of an event – a lunch in the city with mum just after I started working and a fancy dress competition with my sister when I was very young. They also say a lot about my parents. Dad would have designed and constructed the wolf head and mum would have sewn the hessian bag into a wearable costume, hand sewing the tail on at just the right spot. Mum had a very creative eye. She loved Gilbert and Sullivan’s The Mikado. Her sense of fun is apparent.

 

Dad is clearly exhausted by his role as her caregiver now yet he refuses to accept help or respite. These objects remind me that they were a team, they have always been a team … and they still are a team.

Places are like Hens’ Teeth

Finding our way through the system set up for the care of elderly Australians is proving to be more difficult than I expected it to be. Mum and dad have both been assessed and have qualified for what is called a Home Care Package. Dad has qualified for low care and mum for the highest level of care. The aim of this is to keep elderly people living safely at home for as long as possible and, I presume, to lighten the load on the residential aged care sector.

Now that they have been assessed and deemed eligible, I thought it was just a matter of contacting some of the registered care providers on the list that that was provided in the letter that notified them of the result of the assessment, and going on a visit, then settling into a new way of managing with a range of people coming to mum and dad to assist them with their daily needs and to give dad some relief from his role as caregiver.

But no: Today I was told that they are now in a queue and they will have to wait until a home care package is offered to them. I was advised to grab it if and when it happened as “they are like hens’ teeth.”

How long will it take? Well, the longest wait, I was told, was seven years and they were still waiting, and the fastest was six weeks. So it looks like there is some prioritizing that takes place once you get into the queue.

In a class I teach, we discuss the queue; its history, its form and how people feel when they are in one. For most, one minute in a queue feels like ten. Frustration levels rise and people get angry and impatient. Some queues are cool to be in – the line for a cool club or a fashionable eating spot for example. But for most the queue is not a good place to be in. Service providers should work towards managing the queue. They can do this by providing something for people to do while they wait or by balancing the service they offer with the people it seeks to assist: Put simply to balance needs with availability.

We can, while we wait, access a thing called “Take a Break”. This is four hours of respite a week, not on public holidays or weekends and only until 8.00 pm. It is not means tested and costs $40 per week. We can also do this privately through the agency. The cost then is $40 something dollars an hour up until 8.00 pm and $50 something after but at least we could get care after 8.00 pm and on weekends and public holidays if needed.For both of these options  a caregiver (with minimum Cert III Qualifications) will come to the house and mind mum while dad takes a break. The service they need, to keep them safe in their home, are not part of this.

But I question, why wouldn’t I just do this privately, place an ad seeking a suitably qualified person to come to the house and mind mum while dad takes a break? Rates for this sort of service on Airtasker are $25.00 per hour. I could, for just a bit more than the weekly price the government will charge, get a person with the qualifications and personality that suits us to come when we need it and have some control over the whole process.

I am trying hard to make sense of an incomprehensible system. I can’t do it. It is simply too complex and too crazy. I have all my faculties and still I struggle. Information is coming at me from all directions. None of it matches and none of it makes sense. I make sense of something then someone else gives me conflicting information that unravels what I previously understood. Yesterday I read a form that said, “If you don’t have a copy of this form, you can get it from …” It is a system where the blind lead the blind and the demented attempt to explain a process to the demented.

Mum has no idea of what we are doing on her behalf. When mum and dad argue, mum often threatens to walk to the river and throw herself in. Dad’s standard response is, “don’t be stupid, you wouldn’t even know how to find the river.”  Dad, half joking, suggested it may not be a bad option after all. I wonder how many elderly Australians just give up, eat toast, and rely on whatever help they can get from family and friends.