Preparing for death – your death

Elizabeth Quinn and her mother join forces to add life and humour to the death talk.

Preparing for death – your death

Elizabeth Quinn is a writer, francophile and single mother of three young adults. She knows the value of support networks after almost losing her life in a car accident 10 years ago – on the day she planned to leave her marriage. Her website, diywoman.net, was created to provide a similar support network. There, she writes from practical experience about issues of interest to people over 50. Today, she recounts a conversation with her mother about her end-of-life wishes.

•••

The ageing process has mostly been kind to my mother. She is still ambulant, a natural brunette (with touches of grey around her face), a gardener and an avid crossword fan. The fact that she has lost inches in height does not concern her, although she finds it interesting that all of them are from her upper body. We discover this by accident one day at the cinema. Despite our seats being on a raised dais, Mum finds herself looking straight at the head of the person in front.

“I must have lost the height from my torso,” she says, smiling sweetly at the discovery. From that day onwards, we always take a cushion.

Where the ageing process has not been so kind is in the memory department. She acknowledges and compensates for her short-term memory loss by making notes and writing her activities on a calendar. Occasionally she surprises me by remembering some obscure fact mentioned in passing. At other times, she forgets quite major things.

“If it’s important,” she says, “say, ‘This is really important’.”

“I don’t want to treat you like an idiot,” I say. Because she is far from an idiot.

“Well,” she says, her eyes disappearing in a crinkly line, “I’m kind of half an idiot.”

We roar with laughter. And that’s the thing about my mother. In spite of her cognitive impairment, she is the same person she’s ever been. Engaged, wise, humble, interesting, funny.

The longer our parents live, the better we get to know them as individuals. The nature of our relationships may change when carer becomes cared-for, allowing us to demonstrate our love in new ways. Doing whatever we can to maintain quality of life for our elderly loved ones is a privilege afforded only to the children of long-lived parents.

The time has come for Mum and I to work out an advanced care plan for her. It is no easy thing, talking about one’s end-of-life wishes. Mum does it with her usual grace. Like most of us, she fears being a burden. I ask her for her definition of ‘a burden’.

“When I’m no longer able to contribute,” she says.

I tell her she will continue to contribute to my quality of life while ever I can seek her opinion, tell her my stories, make her laugh. She pauses to digest this information.

“While I am pain-free, lucid and able to converse intelligently, I would like to live.”

We are both happy with that.

The next question on the form forces us to imagine the hours before death. What is important? We cross out Spiritual Care with a conspiratorial eye roll. Customs or Cultural Beliefs goes the same way. We are left with Family Present (tick) and Music.

During my father’s lifetime, the crackle of the open fire and the music of Mozart was the soundtrack of life at home. It’s only in the 18 months since his death that Mum has spoken of her own love of music and of the oboe in particular.

Mum has been in a kind of reverie since Dad died – at times visited by ghosts, at others comforted by memories of her youth. At breakfast one morning, she reminisces about a composer she discovered as an 18-year-old when holidaying with a beloved aunt.

“He was an Italian,” Mum says. “His name started with ‘Ch’.”

I consult my phone. “Cimarosa?”

Mum’s face lights up. Yes, she’s sure it’s him. I find his Oboe Concerto in C and within the first bar, I know we’ve found it. I recognise it from my childhood; it is etched into my muscle memory. Across the kitchen table, my mother’s face, usually so smiley, is melting like a Dali painting. I get up and stand beside her, heads touching, until the music ends.

“Funeral selection, Mama?”

“Yes, please.”

We have talked about what we both wish for her final days; that she will see them out from the comfort of her aptly named sunroom, the centre of her universe, looking out at the native garden she has created over 55 years. Perhaps a little Cimarosa playing in the background. Kept safe by familial love.

This article was first published in The Big Issue.

Have you discussed your end-of-life wishes with family? Have you documented these wishes?

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    COMMENTS

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    Paddington
    2nd Jun 2019
    9:58am
    That is beautiful! Burden is something lots of oldies mention. How could any child see their mother as a burden. Whilst ever there is breath there is a contribution/a presence by the mother in her family. It is nearly 40 years since my mother died and I wish every day she had lived long enough to become a burden and I had her for longer. Her passing inflicted a void on the family that was never filled. Her wisdom at controlling any divides or problems was a huge loss. She was needed and missed and still is.
    KB
    5th Jun 2019
    12:47pm
    I agree with you. I miss my mother. She was never a burden. I took care of her, I miss my mother too.
    KB
    5th Jun 2019
    12:47pm
    I agree with you. I miss my mother. She was never a burden. I took care of her, I miss my mother too.
    PlanB
    2nd Jun 2019
    10:05am
    My Mother left her Body to the Uni and I am contemplating doing the same -- I spoke with my Son about this the other day, as he said it is a personal thing and it is totally up to me what I choose to do
    MICK
    2nd Jun 2019
    1:07pm
    Not sure the uni would want mine. Then I am reminded of my own days at university when I found out about some med students who leant out of the first floor window and asked the gardener if he wanted a 'hand'. You can work out what happened when the guy made the mistake of saying yes.
    older&wiser
    2nd Jun 2019
    10:53am
    Well you are lucky if you have family. I have no family to even discuss this with, let alone act for me. I am on Aged Pension, but paid a considerable amount of money to do up a will and instructions, only to have the main inheritor (single like me) pass away suddenly. Do I burden my (few) friends, of similar age, with this discussion - those who have their own families, and allot of problems? I have made it very clear what I want done 'at the end' - but haven't a clue how to ensure this is done, both with my body and estate.
    Hardworker
    2nd Jun 2019
    11:18am
    I empathize with you in2sunset but just because some of us have family doesn't necessarily mean we are any better off. I keep delaying finalising things as I don't know that I fully trust any of them even though they are good people. It really also depends on how they interpret your wishes as well as we all know interpretations can be quite different. As none of us can predict what is likely to happen to us, or when, it is difficult to know what decisions to make. The last thing we want is for others to take over controlling our lives too soon. But we have to give the authority to someone otherwise it ends up truly being a mess. Best of luck. I hope you find a solution.
    Rosret
    2nd Jun 2019
    11:40am
    You don't need to pay to redo your Will. Just retype the Will and put in the hands of a lawyer and they will administer the Will at days end.
    That lovely man in Queensland, Geoffrey Carrick, who donated $5 m to the Royal Flying Service has been remember with his name on one of their aircraft. A fitting tribute for his generosity.
    You can arrange with a funeral parlor long in advance what you would like done and then just forget about it and enjoy your life.
    A friend donated all her estate to a child of someone who had been kind to her and they took care of everything at days end.
    You have lots of choices. I hope you have lots of friends as well. :)
    QuickeyeQld
    3rd Jun 2019
    9:54am
    Yes I agree, it was a nice story, for someone to have a daughter/family interested in final wishes, and be able to carry them out. I have found that most families are very busy these days and don't often live in the same town, and aren't able to provide last wishes. In actual fact things don't often go as planned anyway. Most people would end up in the system for there final journey. Yes wills can be made, at a huge expense, and that helps to give some idea of ones wishes, but that doesn't always go according to plan either. Someone will get ill or pass away at an inconvenient time and totally change the dynamics.

    We all do our best, and its probably best to just spend as much time with family as possible while alive, because we may just have to go with the flow at the end. My husband has dementia and I am terrified about what I will have to achieve and cope with at his end, which will surely take place in the not too distant future, let alone what me end will entail. The wills are done, he has his doctors, as required, and unfortunately it will be up to me to decide when I've had enough of managing him and his issues, and hand him over to the carers.

    I am only human. I have my own life to get on with and finish up, and that won't involve someone running around looking after me, that's for sure. There would be a lot of us in the same boat. And I consider myself lucky because I will probably be able to afford what I decide to do as I age.

    I'm not terribly concerned about the details, but my biggest concern is that i will struggle with what is happening at the end, because I am deaf and use cochlear implants, and I'm worried that those around me at the end, won't know how they operate and won't know that I need new batteries etc. andI'm afraid I am going to miss my own death.
    Diogenes
    2nd Jun 2019
    11:19am
    This is a wonderful well written article. Many years ago patient of mine had a daughter, who to me seemed to be giving up her entire life for her beloved Mum, her comment was "It's not hard, it's not a burden, it's a privilege". I have retained that message for many years, particularly looking after my own dear Mum (my Dad died 50 years ago) , who passed away last year. Every moment was a privilege (though sometimes difficult), that I was granted. Other family members were too far away, so yes the "care" fell on me but I had the privilege of spending all that time with her and sitting with her as she died. My poor brother would have loved to have had that opportunity but lived in another country.
    ElizabethQ
    2nd Jun 2019
    11:48am
    Thank you for that comment Digby. It's not difficult to care for loved ones who are undemanding and appreciative of our efforts, as my mother is and it seems your mother was. I hope to do the same for my children when that time comes. I've told them I would like to write my Advanced Care Plan with them in the next few months. I think it's a good idea for anyone over 60. It gives comfort to both sides of the equation I think.
    Rosret
    2nd Jun 2019
    11:29am
    From experience I have found if they don't have the conversation with you they don't want to have the conversation with you. So no matter how difficult it maybe you are going to have to make all the decisions when the time comes.
    There is an element in our population who see themselves as immortal and all their possession are their equivalent of the crown jewels. It is that determination that saw them survive the odds of war and depression. So no matter how difficult the process at days end we just have to deal with it as it comes.
    MICK
    2nd Jun 2019
    1:34pm
    Very factual. Been there done that. Its difficult but also good when its all over.
    gerry
    2nd Jun 2019
    1:59pm
    I,m 80 very fit ,but when the time comes for someone to stuff a pipe up my nose I should be allowed to pop a pill or pop a painless button..,but because of one demented religion I will have to endure years of pain and indignity..So I intend to load up my car with diesel .fertiliser and a flame and drive at the first Catholic church I come accross
    Troubadour
    2nd Jun 2019
    4:04pm
    Feel so sad for you with this cynical attiude.
    QuickeyeQld
    3rd Jun 2019
    10:02am
    A bit dramatic but I get your point, and agree we should all have that final choice. It wouldn't matter if we change our mind because we would be dead anyway. I'm hoping I will be active till the end, will just drop dead in the veggie garden. Obviously I can't speak for others, but I believe that final journey would be the ultimate experience.
    gerry
    2nd Jun 2019
    1:59pm
    I,m 80 very fit ,but when the time comes for someone to stuff a pipe up my nose I should be allowed to pop a pill or pop a painless button..,but because of one demented religion I will have to endure years of pain and indignity..So I intend to load up my car with diesel .fertiliser and a flame and drive at the first Catholic church I come accross
    gerry
    2nd Jun 2019
    2:11pm
    years ago while back packing I met Fred Hollows doing field surgery and he asked if I was in the medical field and I replied no but did all my vetenary work on my farm,so he said that I would have no problem doing this ,,I politely refused so he made me buy him a beer that evening as penance .I saw the joy on kids faces and old people .Although I have always been a hard hearted batler I planned to do something about it at the end of my life so have willed everything to the Foundation which should pay for a hell of a lot of operations
    I wonder if I should have looked into a way to ensure the foundation lost no money on tax
    gerry
    2nd Jun 2019
    2:11pm
    years ago while back packing I met Fred Hollows doing field surgery and he asked if I was in the medical field and I replied no but did all my vetenary work on my farm,so he said that I would have no problem doing this ,,I politely refused so he made me buy him a beer that evening as penance .I saw the joy on kids faces and old people .Although I have always been a hard hearted batler I planned to do something about it at the end of my life so have willed everything to the Foundation which should pay for a hell of a lot of operations
    I wonder if I should have looked into a way to ensure the foundation lost no money on tax
    gerry
    2nd Jun 2019
    2:14pm
    I wonder how many people have willed that they have a giant cell phone as a headstone
    gerry
    2nd Jun 2019
    2:14pm
    I wonder how many people have willed that they have a giant cell phone as a headstone
    SKRAPI
    2nd Jun 2019
    2:59pm
    SOUNDS A VERY NICE WAY OF HANDLING IT . BETTER THAN A STERILE ATMOSPHERE OF A HOSPITAL WHICH CAN B SO LONELY EVEN IF U R THERE IT FEELS COLD & LONELY 4 THE PATIENT & U CAN'T DO LITTLE EXTRAS LIKE U CAN @ HOME 2 MAKE LOVED 1 FEEL MORE @HOME
    Moo
    3rd Jun 2019
    12:33pm
    Ah yes, everybody wants to die at home. Even my wife, after many years of illness, wouldn't ask for a Doctor or Ambulance or Hospital any more. She knew her time was up and didn't want to be a burden, kept it to herself. Found her passed away in bed early one morning not long after. The shock of ringing for an Ambulance with Paramedics was bad enough, but because she didn't die in Hospital or a Nursing Home, the Police had to attend to make sure there was no foul play. Then it also happened to be a Public Holiday, and her usual Doctor was away on holidays. When and where was a Death Certificate coming from? Thank God there was no problem in the Police releasing the body to the Undertakers. I now tell everybody, yes, it would be good to die at home, but not when the Police have to be called.
    KB
    5th Jun 2019
    12:44pm
    I have written down my wishes for my funeral and where I wish to go. This makes I easier for loved ones who are grieving. I have also included a letter for my daughter including many different things so she can be hopefully comforted.
    KB
    5th Jun 2019
    12:44pm
    I have written down my wishes for my funeral and where I wish to go. This makes I easier for loved ones who are grieving. I have also included a letter for my daughter including many different things so she can be hopefully comforted.


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