Post by Banjo on Aug 9, 2022 6:41:55 GMT 7
I'm not a fan of The Australian but thought this article was worth reading.
It's pay-walled so I'll copy it in it's entirety.
Confessions of a reluctant carer
By The Reluctant Carer
The Weekend Australian Magazine
12:00AM August 6, 2022
Facebook
Twitter
Email
No one was certain which of my father’s ailments had jumped the queue, but there were plenty of contenders. Heart, kidneys or those beleaguered low-tar lungs? These calls come, sooner or later. Wherever you are in your “journey”, as they say. The collapse of a loved one, or someone you are supposed to love, will abduct you into another reality. The question is how readily we sign up for the ride.
Dad was 86 then. Mum, 88, fitter than my father, but fragile all the same. They were in their 40s when they had me, 12 years after my sister and nine since my brother. On holidays the other kids sometimes thought my parents were my grandparents. This worried me, but I was worried already. It is the answered prayers that we have to watch out for, and their long lives were mine.
Dad spent four decades in the Merchant Navy and I watched his fettle turn for the worse in recent years as slowly and surely as one of his ships. This call was different. I could sense it, and I knew because I didn’t want to know. Despite decades of planning, fretting and elaborate internal bargaining, I felt no more qualified to take this on board at 47 than at seven.
I went downstairs to tell my wife. “Dad’s in hospital again. I don’t know what difference it makes if I’m there. Maybe I can wait and see what happens…” Having helped to nurse her mother through a quarter-century of cancer, she said simply, “Go.”
Out of one life and into another. In the months that followed, Dad managed a partial rebound, which allowed him and his rolling buffet of comorbidities home and, shortly after, I abandoned mine. My marriage, like my father, was less stable than it seemed and my wife and I are in the foothills of divorce. Irreversibly so. In what turned out to be a synchronous skip fire of a season, my work evaporated at the same time as one grand self-employed gamble went gratuitously wrong. So my somehow recovering father was tended to by a quietly collapsing version of his son.
As the year trudged on I found myself subtly absorbed into my parents’ house and rituals, the gaps between what they can, can’t and shouldn’t do. Gradually, I became a carer. My siblings have kids of their own. They work. I have no children, job, money or anyone else to worry about now. This is how I came to be back in the town and the bedroom I left in the late ’80s, caring for people in their late 80s. Sure, I care. But I am also captive.
November 1
The first question in this house is always, “Did we make it through the night?” If a rustle, a cough or a groan confirms our group survival then the big issue dissolves into the everyday details and desires of any other household – can I make it to the bathroom before you? Dad’s ablutions unfold at a subglacial rate, which means I do not want to miss my slot before he gets in there and stays put for the duration of the average movie. That he gets to the bathroom at all is a wonderful thing. But I still don’t want to get stuck behind him.
If nothing else, being back at home has proven a radical affirmation that you can be grateful and selfish at the same time. Joint first on the everyday wish list is that my mother – presently felled by shingles – doesn’t make it downstairs before me and start doing things for herself when she is this unwell. She has a determination which, through infirmity, borders on self-destruction. She will, like some crazed Olympian, attempt everything she can unless someone intervenes.
Once we are up and running (there is no running), I conduct a series of interviews with the key players and get a sense of what we might do today. The first conversation of the day is always about sleep. How did you sleep? Did you sleep OK? How are you? Out of this comes a kind of competitive insomnia. “Oh, it was awful.” “Up all night.” “Not so good, son, couldn’t get off … then woke up again.”
I make Dad his breakfast more out of expediency than necessity; he moves so slowly it is painful to watch him do this stuff alone. Not as painful as it is for him. His greatest ailments are unseen: chronic obstructive pulmonary disease, diabetes, extensive arthritis, assorted rheumatic disorders, prostate cancer and ongoing complications from what we know now were a series of heart attacks that called me home all those months ago when Dad was taken to hospital.
Since then he has made remarkable progress, not least by staying alive. After a few abortive bedside goodbyes and more than a month in hospital, he carefully cast aside a pessimistic prognosis and a walking frame, embraced the complexities of catheterisation and now enjoys, if that’s the word, a tremendous quantity of drugs and a small measure of independence. That measure is everything. Though living at home he is a kind of Frankenpensioner, animated and sustained by outside forces, an array of tech, pharma and family that keep this person, so much of the previous century, participant in the present day. In recent years this declared functionality has been enabled only by his annexing of my mother as a kind of vassal state. He depends on her. My return and then her illness have slid the baton to me.
Mum’s vivacity and disdain have been consumed by the shingles. Although the condition has now condensed into a few red welts on her right arm, the pain and anxiety emanating from it are beyond all proportion to these outer signs. She doesn’t even want her tea today, which is most irregular.
Dad, meanwhile, is simply surprised to have lived this long. It was never his intention. He was, I think, determined to smoke, drink and sit his way into an early grave, only to discover his body had other plans. Our father’s pessimistic slogans, “I won’t make old bones” (which he was still saying in his early 80s) and “You won’t have to worry about me much longer”, echo like the broken campaign promises of some now entrenched regime. Harrowing as it can be when he takes a turn for the worse, it’s expected. We know the terrain. Mum’s pain is less familiar, and so plays harder on my mind.
November 3
Sleep is our squad goal. When my parents are unconscious I get a clear sense of relief, of a job well done. When we sleep, no one is hungry, hot, cold, uncomfortable, confused or annoyed. “Nature’s soft nurse”, as Shakespeare called it, is kinder than I could ever be, yet we have become reliant on doctors for our supply.
I forget when I realised my dad had a repeat prescription for powerful tranquillisers. It feels like 15 years or so, back in the benign lowlands of his early 70s – turf I no longer consider to be old age. I was emerging then, belatedly, from an indulgent narcotic phase that had lasted since my late teens. I would frequently purloin his pills in subtle quantities to “take the edge off” this or that.
Despite largely cleaning up from prescribed and recreational drugs, I still deploy bits of my father’s cache at the end of whatever I deem to be a difficult day. At least, I imagine the quantities of pills purloined are subtle. For all I know this might be another of our silent bonds. Perhaps he knows but says nothing. In a way I hope so. I can go without, but the Old Man goes into an anticipatory tailspin (like most of us, he is more panicked by the foreseen than the experienced) whenever supplies are low.
The economy of bedtime has been complicated by Mum’s arrival on the sickness scene. Dad is more than happy to include her in the hustle. Undone by her illness, she neither sleeps well nor devours the days as she once did. Proud of nearing her 10th decade on nothing more than a daily aspirin, the moment she asked for some of “Dad’s tablets” was doubly significant since it betrayed a depth to her discomfort she might not otherwise express. Soon there are so many drugs changing hands here it is like an ancient, all-white version of The Wire.
November 13
Mum says her pain is worse. I call the doctor and in the afternoon the practice nurse pays a visit. She has brought Lidocaine patches for Mum, which can be applied directly to where she feels pain. In her case, the red marks that run like bites along her forearm. The nurse knows my folks. “Mum seems confused.” I’d love to argue, but this is undeniable. Instead I shrug. “I’ll come back, take some blood and run the tests on her.” She means dementia and Alzheimer’s, but we don’t say as much lest mention of the devil might summon it up.
December 11
When everyone seems OK, I tend to flee. Nowhere special, just not here. I am blessed by how many allies I still have here. Without others to turn to, my life might be a crushing errand. Today I ride to my friend Dave’s house. He and I have been close since we were 13. The relief of talking things over with someone who knows me this well, but with whom I share no DNA, is incalculable. It is confession, in a sense.
There and elsewhere I drink, complain and make light of it all. Sometimes a truth slinks out. “It sounds like looking after children,” says Dave’s partner. “If you wish your children sudden, painless deaths each time you say goodnight and leave their rooms,” I reply. This is the fact of it. Dad first, and soon, ideally. If only for practical reasons. Mum could get by without him, up to a point; the reverse is impossible. The longer this lasts, the worse it will be and perhaps the worse I will become. The more of us there are, the faster we sink. Our life is a leaking lifeboat. Or so it seems to me.
“You do the best you can,” I confess. “But you can’t help wishing it was over.” Dave’s kitchen falls silent, not with shock but recognition. Even those who have not faced it expect to feel the same. Hugged and heard, I ride home on all the guilt and conflict that such a troubled love evokes.
December 15
This morning I find Mum crying beside the washing machine. She can’t remember how to switch it on. I bring her back into the kitchen and she sits down, sobbing. “I’m useless.” She has her head in her hands. It is the most despondent I have seen her, or perhaps that she has let me see her, since her mother died, almost 40 years ago. Mum is hanging on to something more fundamental than the iron, the shopping and the car keys. How do you let someone so fragile but determined be themselves? This is our conundrum.
December 17
I am halfway down the stairs when Mum lurches from the bathroom with several toothbrushes and a pressing question. “Are any of these yours?” Between the banisters I glimpse that she is naked. This is new – her naked, not the nakedness itself. Dad spearheaded that months ago. From Mum, however, it is an innovation, or whatever the reverse of that may be. This is not an emergency, the toothbrush question. If it plays as one to her, however, then perhaps we have a problem. Decades of discretion undone by fears about dental hygiene.
What does this say about her state of mind? What I am also seeing but not wanting to admit here is that as Mum’s outlook worsens, my parents are becoming more and more the same. The stages of decline seem to erase the individual.
December 18
While their selves are merging and their friends are dying out, a decent haul of Christmas cards tumbles onto the mat each morning. Some of this is down to dutiful offspring who manage the seasonal post of their less capable folks. We are not there yet, at least. Mum can still write; I do the posting. We set the cards around the hearth and admire the scene.
The cards function like the old things in the kitchen. They tell my parents who they are, who cares, and where they once were together. One card propels Mum down memory lane, but this is no stroll. Behind the glittered robins and Bible kings she treads a path of ancient grievance. The note comes from an old neighbour who says her husband is now too ill to drive. Mum explains this with an unfamiliar smile.
“He mocked me,” she recalls of the now immobile man. “For learning to drive in an automatic. This was 1968.” She looks off into the distance, half a century of deferred justice dancing in her eyes. “Now he’s not going anywhere.” Talk about a dish served cold.
“Learning to drive and having children were the best things I ever did,” she announces.
I am proud of her, if somewhat shocked by the duration of her vengeance. I am also mindful and a little sad that these, her most beloved accomplishments, kids and car skills, have not been among mine.
December 23
My brother and his youngest daughter pop round. Mum is sufficiently emboldened by this that she agrees to visit her oldest nearby friend, Florence. Since this constitutes progress and because I think I am going insane here, I go along for the ride.
It is great to see Mum and her former neighbour chatting. Kids and professionals might help, but there’s nothing like an old friend. I take a picture of them talking and send it to Florence’s son, my friend from early childhood. These images are helpful among the network of absent children; we trade them when they come. It’s good just to see something that merits a photograph.
“It’s helpful in old age,” her friend says, “to have a wide range of interests.”
“Migraines and incest?” Mum says, without a hint of contrivance. She fiddles with her hearing aid as we laugh but is happy to see us doing so.
“What did I say?” she asks knowingly.
“MIGRAINES AND INCEST!” we reply, more than once, until the joke is clear. I don’t remember when this many of us had this much fun. It is like old times.
Extracted from The Reluctant Carer: Dispatches from the Edge of Life, (Picador $34.99) out now.
amp.theaustralian.com.au/weekend-australian-magazine/confessions-of-a-reluctant-carer/news-story/b94d2fcc95fe67b12220247057f83b97
It's pay-walled so I'll copy it in it's entirety.
Confessions of a reluctant carer
By The Reluctant Carer
The Weekend Australian Magazine
12:00AM August 6, 2022
No one was certain which of my father’s ailments had jumped the queue, but there were plenty of contenders. Heart, kidneys or those beleaguered low-tar lungs? These calls come, sooner or later. Wherever you are in your “journey”, as they say. The collapse of a loved one, or someone you are supposed to love, will abduct you into another reality. The question is how readily we sign up for the ride.
Dad was 86 then. Mum, 88, fitter than my father, but fragile all the same. They were in their 40s when they had me, 12 years after my sister and nine since my brother. On holidays the other kids sometimes thought my parents were my grandparents. This worried me, but I was worried already. It is the answered prayers that we have to watch out for, and their long lives were mine.
Dad spent four decades in the Merchant Navy and I watched his fettle turn for the worse in recent years as slowly and surely as one of his ships. This call was different. I could sense it, and I knew because I didn’t want to know. Despite decades of planning, fretting and elaborate internal bargaining, I felt no more qualified to take this on board at 47 than at seven.
I went downstairs to tell my wife. “Dad’s in hospital again. I don’t know what difference it makes if I’m there. Maybe I can wait and see what happens…” Having helped to nurse her mother through a quarter-century of cancer, she said simply, “Go.”
Out of one life and into another. In the months that followed, Dad managed a partial rebound, which allowed him and his rolling buffet of comorbidities home and, shortly after, I abandoned mine. My marriage, like my father, was less stable than it seemed and my wife and I are in the foothills of divorce. Irreversibly so. In what turned out to be a synchronous skip fire of a season, my work evaporated at the same time as one grand self-employed gamble went gratuitously wrong. So my somehow recovering father was tended to by a quietly collapsing version of his son.
As the year trudged on I found myself subtly absorbed into my parents’ house and rituals, the gaps between what they can, can’t and shouldn’t do. Gradually, I became a carer. My siblings have kids of their own. They work. I have no children, job, money or anyone else to worry about now. This is how I came to be back in the town and the bedroom I left in the late ’80s, caring for people in their late 80s. Sure, I care. But I am also captive.
November 1
The first question in this house is always, “Did we make it through the night?” If a rustle, a cough or a groan confirms our group survival then the big issue dissolves into the everyday details and desires of any other household – can I make it to the bathroom before you? Dad’s ablutions unfold at a subglacial rate, which means I do not want to miss my slot before he gets in there and stays put for the duration of the average movie. That he gets to the bathroom at all is a wonderful thing. But I still don’t want to get stuck behind him.
If nothing else, being back at home has proven a radical affirmation that you can be grateful and selfish at the same time. Joint first on the everyday wish list is that my mother – presently felled by shingles – doesn’t make it downstairs before me and start doing things for herself when she is this unwell. She has a determination which, through infirmity, borders on self-destruction. She will, like some crazed Olympian, attempt everything she can unless someone intervenes.
Once we are up and running (there is no running), I conduct a series of interviews with the key players and get a sense of what we might do today. The first conversation of the day is always about sleep. How did you sleep? Did you sleep OK? How are you? Out of this comes a kind of competitive insomnia. “Oh, it was awful.” “Up all night.” “Not so good, son, couldn’t get off … then woke up again.”
I make Dad his breakfast more out of expediency than necessity; he moves so slowly it is painful to watch him do this stuff alone. Not as painful as it is for him. His greatest ailments are unseen: chronic obstructive pulmonary disease, diabetes, extensive arthritis, assorted rheumatic disorders, prostate cancer and ongoing complications from what we know now were a series of heart attacks that called me home all those months ago when Dad was taken to hospital.
Since then he has made remarkable progress, not least by staying alive. After a few abortive bedside goodbyes and more than a month in hospital, he carefully cast aside a pessimistic prognosis and a walking frame, embraced the complexities of catheterisation and now enjoys, if that’s the word, a tremendous quantity of drugs and a small measure of independence. That measure is everything. Though living at home he is a kind of Frankenpensioner, animated and sustained by outside forces, an array of tech, pharma and family that keep this person, so much of the previous century, participant in the present day. In recent years this declared functionality has been enabled only by his annexing of my mother as a kind of vassal state. He depends on her. My return and then her illness have slid the baton to me.
Mum’s vivacity and disdain have been consumed by the shingles. Although the condition has now condensed into a few red welts on her right arm, the pain and anxiety emanating from it are beyond all proportion to these outer signs. She doesn’t even want her tea today, which is most irregular.
Dad, meanwhile, is simply surprised to have lived this long. It was never his intention. He was, I think, determined to smoke, drink and sit his way into an early grave, only to discover his body had other plans. Our father’s pessimistic slogans, “I won’t make old bones” (which he was still saying in his early 80s) and “You won’t have to worry about me much longer”, echo like the broken campaign promises of some now entrenched regime. Harrowing as it can be when he takes a turn for the worse, it’s expected. We know the terrain. Mum’s pain is less familiar, and so plays harder on my mind.
November 3
Sleep is our squad goal. When my parents are unconscious I get a clear sense of relief, of a job well done. When we sleep, no one is hungry, hot, cold, uncomfortable, confused or annoyed. “Nature’s soft nurse”, as Shakespeare called it, is kinder than I could ever be, yet we have become reliant on doctors for our supply.
I forget when I realised my dad had a repeat prescription for powerful tranquillisers. It feels like 15 years or so, back in the benign lowlands of his early 70s – turf I no longer consider to be old age. I was emerging then, belatedly, from an indulgent narcotic phase that had lasted since my late teens. I would frequently purloin his pills in subtle quantities to “take the edge off” this or that.
Despite largely cleaning up from prescribed and recreational drugs, I still deploy bits of my father’s cache at the end of whatever I deem to be a difficult day. At least, I imagine the quantities of pills purloined are subtle. For all I know this might be another of our silent bonds. Perhaps he knows but says nothing. In a way I hope so. I can go without, but the Old Man goes into an anticipatory tailspin (like most of us, he is more panicked by the foreseen than the experienced) whenever supplies are low.
The economy of bedtime has been complicated by Mum’s arrival on the sickness scene. Dad is more than happy to include her in the hustle. Undone by her illness, she neither sleeps well nor devours the days as she once did. Proud of nearing her 10th decade on nothing more than a daily aspirin, the moment she asked for some of “Dad’s tablets” was doubly significant since it betrayed a depth to her discomfort she might not otherwise express. Soon there are so many drugs changing hands here it is like an ancient, all-white version of The Wire.
November 13
Mum says her pain is worse. I call the doctor and in the afternoon the practice nurse pays a visit. She has brought Lidocaine patches for Mum, which can be applied directly to where she feels pain. In her case, the red marks that run like bites along her forearm. The nurse knows my folks. “Mum seems confused.” I’d love to argue, but this is undeniable. Instead I shrug. “I’ll come back, take some blood and run the tests on her.” She means dementia and Alzheimer’s, but we don’t say as much lest mention of the devil might summon it up.
December 11
When everyone seems OK, I tend to flee. Nowhere special, just not here. I am blessed by how many allies I still have here. Without others to turn to, my life might be a crushing errand. Today I ride to my friend Dave’s house. He and I have been close since we were 13. The relief of talking things over with someone who knows me this well, but with whom I share no DNA, is incalculable. It is confession, in a sense.
There and elsewhere I drink, complain and make light of it all. Sometimes a truth slinks out. “It sounds like looking after children,” says Dave’s partner. “If you wish your children sudden, painless deaths each time you say goodnight and leave their rooms,” I reply. This is the fact of it. Dad first, and soon, ideally. If only for practical reasons. Mum could get by without him, up to a point; the reverse is impossible. The longer this lasts, the worse it will be and perhaps the worse I will become. The more of us there are, the faster we sink. Our life is a leaking lifeboat. Or so it seems to me.
“You do the best you can,” I confess. “But you can’t help wishing it was over.” Dave’s kitchen falls silent, not with shock but recognition. Even those who have not faced it expect to feel the same. Hugged and heard, I ride home on all the guilt and conflict that such a troubled love evokes.
December 15
This morning I find Mum crying beside the washing machine. She can’t remember how to switch it on. I bring her back into the kitchen and she sits down, sobbing. “I’m useless.” She has her head in her hands. It is the most despondent I have seen her, or perhaps that she has let me see her, since her mother died, almost 40 years ago. Mum is hanging on to something more fundamental than the iron, the shopping and the car keys. How do you let someone so fragile but determined be themselves? This is our conundrum.
December 17
I am halfway down the stairs when Mum lurches from the bathroom with several toothbrushes and a pressing question. “Are any of these yours?” Between the banisters I glimpse that she is naked. This is new – her naked, not the nakedness itself. Dad spearheaded that months ago. From Mum, however, it is an innovation, or whatever the reverse of that may be. This is not an emergency, the toothbrush question. If it plays as one to her, however, then perhaps we have a problem. Decades of discretion undone by fears about dental hygiene.
What does this say about her state of mind? What I am also seeing but not wanting to admit here is that as Mum’s outlook worsens, my parents are becoming more and more the same. The stages of decline seem to erase the individual.
December 18
While their selves are merging and their friends are dying out, a decent haul of Christmas cards tumbles onto the mat each morning. Some of this is down to dutiful offspring who manage the seasonal post of their less capable folks. We are not there yet, at least. Mum can still write; I do the posting. We set the cards around the hearth and admire the scene.
The cards function like the old things in the kitchen. They tell my parents who they are, who cares, and where they once were together. One card propels Mum down memory lane, but this is no stroll. Behind the glittered robins and Bible kings she treads a path of ancient grievance. The note comes from an old neighbour who says her husband is now too ill to drive. Mum explains this with an unfamiliar smile.
“He mocked me,” she recalls of the now immobile man. “For learning to drive in an automatic. This was 1968.” She looks off into the distance, half a century of deferred justice dancing in her eyes. “Now he’s not going anywhere.” Talk about a dish served cold.
“Learning to drive and having children were the best things I ever did,” she announces.
I am proud of her, if somewhat shocked by the duration of her vengeance. I am also mindful and a little sad that these, her most beloved accomplishments, kids and car skills, have not been among mine.
December 23
My brother and his youngest daughter pop round. Mum is sufficiently emboldened by this that she agrees to visit her oldest nearby friend, Florence. Since this constitutes progress and because I think I am going insane here, I go along for the ride.
It is great to see Mum and her former neighbour chatting. Kids and professionals might help, but there’s nothing like an old friend. I take a picture of them talking and send it to Florence’s son, my friend from early childhood. These images are helpful among the network of absent children; we trade them when they come. It’s good just to see something that merits a photograph.
“It’s helpful in old age,” her friend says, “to have a wide range of interests.”
“Migraines and incest?” Mum says, without a hint of contrivance. She fiddles with her hearing aid as we laugh but is happy to see us doing so.
“What did I say?” she asks knowingly.
“MIGRAINES AND INCEST!” we reply, more than once, until the joke is clear. I don’t remember when this many of us had this much fun. It is like old times.
Extracted from The Reluctant Carer: Dispatches from the Edge of Life, (Picador $34.99) out now.
amp.theaustralian.com.au/weekend-australian-magazine/confessions-of-a-reluctant-carer/news-story/b94d2fcc95fe67b12220247057f83b97
