Thank you to all the posters in reply to my original question. I think Carla has nailed the problem “Our medical industry has created a monster”. The population is ageing, with fewer people of working age to pay taxes (assuming that they can get a job), and more and more older people who need very expensive care. We prop up the tax base so we can subsidise aged care, by bringing in young workers as migrants, refugees, asylum seekers etc. However unless we have a sustainable spread of population, decent care can’t be affordable. Why does the medical system keep people alive at all costs – costs in money and quality of life to themselves and their relatives, as well as to the country? I have never met anyone who wants to live past the point where they can feed, wash and toilet themselves, without any chance of improvement. Why don’t we get more choice?
Our medical industry has created a monster, and our government backs off from taking any responsibility like it's no one's problem. Then it becomes the problem, and the burden, of whatever family members get dragged into the maelstrom of elder caregiving.
I seriously never thought my mother would live this long (she's 86.5). She's been disabled with balance and walking since her late 70's, and has been on all sorts of medication for diabetes, hypertension, high cholesterol, etc. She has congestive heart failure and moderate kidney disease. She takes like a dozen prescriptions, has medical appointments almost every week, and is in the ER about once a quarter. Plus on a day to day basis, she can do almost nothing for herself.
My maternal grandmother died at 82, and she was in much better shape physically than my mother. So I figured my mother would live to her early 80's, at most. Things have changed, though. Modern medicine has made great progress in keeping people alive when they can no longer function or take care of themselves.
My mother has most of her marbles but is disinclined to manage her own affairs, so my sister and I take care of her finances and her schedule. When she reaches the point of being unable to pick herself up to go to the bathroom, I don't know what we're going to do, because neither my sister nor me has any intention of changing diapers, but Mom has no intention of going into a nursing home. She is used to handing her problems over to someone else and expecting them to come up with a solution that works for her. The idea that adult children are responsible for their parents has not evolved to take into account these lengthy periods of disability and the burden that places on adult children who are themselves aging and facing illnesses and disabilities.
I could have written any post in this thread. My 80 year old mom who had endless energy to take on the world now can't even dial a phone, cook a meal or read a paper. She's otherwise healthy as a horse and could go on like this for years. Dad is her primary caretaker and is exhausted by the constant cycle of meeting one need only to have another pop up. I never want to end up like they are. This is way too common. Wish there was better elder care in this country.
OMG...KatieKay. I get that. I live it. I just haven't said the words out loud. I take care of mom. I'm the youngest kid at 54. She's 92. Was a real go getter, worked full time and drove till she was 78 and her eyesight stopped all that. Growing up and as I raised my kids, she was a pain in the butt because she was all up in my business...like RoseMarie on Everybody Loves Raymond. Of course I love her, always have. But, nowadays- that woman who used to do too much, and know too much, had a spotless home and didn't respect the boundaries of my own...now she is like having a toddler that smokes and has a debit card and also like a dissatisfied "tween" girl. I don't feel hateful about this, but dealing with her ain't easy and when my kids have finally become adults and I've earned the freedom to come and go....we can't do anything that doesn't accommodate and include her. Getting someone that can hang out with her, or heaven forbid be with her overnight, is MUCH more difficult than finding care for kids. All the medications and the delicate nature of administering them properly is a daunting responsibility. I've had to quit my job. I only have a good 10years left to work at a tax paying job and build up my own SSI , I have nothing invested or saved for retirement. I am getting worn down, plus I am starting to fear the real possibility of ending up with dementia, too. It's scary, because when I look at how my mom is confused and unwillingly dependant on being cared for properly. I would kill anyone who mistreated her when she is in no position to think her way out of a bad situation. The thought of placing her somewhere unfamiliar with people she won't know is heartbreaking. I do not want to end up that way. I raised my kids mostly without a man. I worked alot. I had my first right out of high school and spent the last half of my 40's (once the kids had grown up and left) muddling through the ugly side if menopause. Once I hit 50, the worse of menopause fading, I began to feel myself revive. The hormonal changes had leveled off...I was blossoming into the beautiful side of being an older woman. I was becoming happy and healthy. Then I had to face the fact that my mom could not stay by herself anymore, even with daily visits from me and everyone else close. I was hung-go and felt like this must be my purpose, that first year. We are in the third year now and I am often stressed out and numb to any joy of being with her. All if her needs are all consuming. Even when all the tasks required are accomplished I can't even poop without her seeking me out or calling for me to ask me the same irrelevant question again and again. What will come of all this? Idk.
My grandmother lived to be 98. Her daughter, my dear Aunt Ethel, said repeatedly that she hoped she didn't live that long. She took no medications and did nothing special about her diet, except watch her weight. She lived 3 months past 100. Unlike her mother, she was lucid all that time, and seemed reasonably content. She didn't want to live that long, but she really had no choice. And she made the best of it.
Maragret, no, I don't think that stopping your blood pressure med would cause your death. The bigger risk is you'd have a stroke, and not only continue living but be disabled as well. And I doubt that taking your drugs would hasten your husband's death.
A very insightful and thought-provoking book on this subject is "Being Mortal: Medicine and What Matters in the End" by Atul Gawande.
I'm all for living a long HEALTHY, ACTIVE life. Once you need handfuls of meds, 24/7 care, having others give up their lives to care for you.. it is too much and I don't want my parents to hang around in this state for years.. nor do I want to live in that condition for years either.
My parents have dementia and I can't imagine anyone wanting to live years and years with a broken brain. Dementia has to cause suffering for the dementia person but also untold suffering for the poor person left to care for them.
One of my clueless relatives (my moms younger sister) is always harping on my parents health and how they should eat this and that (organic foods), stay away from sugar, exercise (she even asked the memory care if they had an exercise room or if they teach yoga and Pilates there.. lol ). She stated once.. maybe they will live into their 100's if they take care of themselves.. wow.... what about me? I would be long gone by then if the stress and expense of having dementia parents continues for that many years.
I feel guilty having thoughts that I don't want them to live for years in the state they are in.. but I also know I would miss them in my life because I do love them. I know if I had dementia or a terminal illness or a severely low quality of life I would do the same as you Sue.. stop all but the meds to control pain (if I had the means and ability to do so).
I'm afraid I get more and more bitter and angry at sick old people who just stick around to make lives miserable for their families. Of course, this sounds mean, but I do feel that. I guess i am at the burn out point.
Sue888- I absolutely agree with you. I plan the same for myself.
As for many others, this comment hits too close to home. Mother has long since "outlived" her sell-by date. She is not happy, we are not happy, she meddles and fusses and drives us all crazy. I've long since forgotten who she used to be---and I am afraid I will only remember the "batty" years.
Medicine is all about keeping the patient alive, as long as the patient wants to do extraordinary means to STAY alive. Actually, the fear of death is an enormous reason a lot of people hang on so tenaciously. She is kept alive by insulin, cholesterol meds, HBP meds, constant antibiotics....and all whatever else she has. I look at her life and say "absolutely not for me!!".
Mom's QOL of life is ok, I guess. She adores attention and she seems to get that from enough people that she is willing to live a very cloistered life.
Mom's mind is going, and that frustrates her. When she says "What is wrong with me?" b/c she can't remember something, I just say "You have 88 years of memories stored in your brain. Of course you'll forget things."
It's not fair, that's for sure. And I personally HATE that longevity is a big factor in the women in my family. I DO NOT want to live like mother is.
BOTH of my grandmothers were 100% independent until their deaths at ages 94 and 91, respectively. Mother has required 24/7 since she was 72.
I agree Margaret! After watching my MIL suffer with dementia for over 7 years, my husband and I both know we don't want to live that way. When our quality of life gets bad we will stop ALL medications except for pain relief. Either that or freeze our bodies until they find the fountain of youth:)
I have been reading so many posts about people whose bodies are outliving their minds, and the awful consequences for them and for the people they have always loved. We have seen our own olds live to 100 and 95, and neither of them wanted to be there. Neither I or my husband want to be there either. Living to 90 is quite long enough. We heard a doctor say that few people would live longer than 85 without constant medication, and it seems that the important drugs are for blood pressure and cholorestol. I take them now, my husband doesn’t need them. If we were to reverse it when we have had enough (ie he takes my drugs instead of me), will this make it easy for us? Let God take us, instead of the doctors playing at being god? What do others think about this option?
Living to a ripe old age is overrated. Outliving one's spouse and having to live with painful infirmities, whether physical or mental doesn't appeal much. Right now I'm trying to focus on quality of life: cultivating loving relationships with my family and friends, taking care of my physical and mental health, and strengthening the spirit. Witnessing my mother's decline over the past few years has been a sobering lesson I don't want to repeat. It really made me look closer at my priorities. I still have a lot of work to do in that area.
I agree that it's a terrible thing to be fairly well physically, but lack the mental capacity to care for yourself and have to be cared for like an infant. It's one reason that I am perplexed with the latest marketing advertisement by the American Alzheimers Association. Their slogan is that one day we will survive having Alzheimers. Well.....I'm not sure who told them that should be a goal, but, it sure shocked me. I thought curing or stopping the damage was the goal. People already live with Alzheimers for many years, but, they don't know it, because their brain is broken. I'm just not sure how that marketing plan ever saw the light of day.
MargaretMcKen, one thing I had notice is that one would have a healthy physical body but the brain is broken, or the person's mind is healthy but the physical body is broken.
In a recent local newspaper article for example, this gentleman use to walk 3 miles a day and always came home. He and his wife were at Costco, when she notice that while walking into the store, he had disappeared. The husband did have dementia but he was doing ok. Frantic searches began, day after day. Eventually his body was found many miles from the store, cause of death the outside elements.
Another person comes to mind, former President Ronald Reagan. To look at him he looked healthy after he had left office, he was horse back riding, etc. One would never know by looking at him that he was dealing with Alzheimier's.
I seriously never thought my mother would live this long (she's 86.5). She's been disabled with balance and walking since her late 70's, and has been on all sorts of medication for diabetes, hypertension, high cholesterol, etc. She has congestive heart failure and moderate kidney disease. She takes like a dozen prescriptions, has medical appointments almost every week, and is in the ER about once a quarter. Plus on a day to day basis, she can do almost nothing for herself.
My maternal grandmother died at 82, and she was in much better shape physically than my mother. So I figured my mother would live to her early 80's, at most. Things have changed, though. Modern medicine has made great progress in keeping people alive when they can no longer function or take care of themselves.
My mother has most of her marbles but is disinclined to manage her own affairs, so my sister and I take care of her finances and her schedule. When she reaches the point of being unable to pick herself up to go to the bathroom, I don't know what we're going to do, because neither my sister nor me has any intention of changing diapers, but Mom has no intention of going into a nursing home. She is used to handing her problems over to someone else and expecting them to come up with a solution that works for her. The idea that adult children are responsible for their parents has not evolved to take into account these lengthy periods of disability and the burden that places on adult children who are themselves aging and facing illnesses and disabilities.
I get that. I live it. I just haven't said the words out loud.
I take care of mom. I'm the youngest kid at 54. She's 92. Was a real go getter, worked full time and drove till she was 78 and her eyesight stopped all that. Growing up and as I raised my kids, she was a pain in the butt because she was all up in my business...like RoseMarie on Everybody Loves Raymond. Of course I love her, always have. But, nowadays- that woman who used to do too much, and know too much, had a spotless home and didn't respect the boundaries of my own...now she is like having a toddler that smokes and has a debit card and also like a dissatisfied "tween" girl.
I don't feel hateful about this, but dealing with her ain't easy and when my kids have finally become adults and I've earned the freedom to come and go....we can't do anything that doesn't accommodate and include her. Getting someone that can hang out with her, or heaven forbid be with her overnight, is MUCH more difficult than finding care for kids. All the medications and the delicate nature of administering them properly is a daunting responsibility. I've had to quit my job. I only have a good 10years left to work at a tax paying job and build up my own SSI , I have nothing invested or saved for retirement. I am getting worn down, plus I am starting to fear the real possibility of ending up with dementia, too. It's scary, because when I look at how my mom is confused and unwillingly dependant on being cared for properly. I would kill anyone who mistreated her when she is in no position to think her way out of a bad situation. The thought of placing her somewhere unfamiliar with people she won't know is heartbreaking.
I do not want to end up that way.
I raised my kids mostly without a man. I worked alot. I had my first right out of high school and spent the last half of my 40's (once the kids had grown up and left) muddling through the ugly side if menopause. Once I hit 50, the worse of menopause fading, I began to feel myself revive. The hormonal changes had leveled off...I was blossoming into the beautiful side of being an older woman. I was becoming happy and healthy.
Then I had to face the fact that my mom could not stay by herself anymore, even with daily visits from me and everyone else close.
I was hung-go and felt like this must be my purpose, that first year. We are in the third year now and I am often stressed out and numb to any joy of being with her. All if her needs are all consuming. Even when all the tasks required are accomplished I can't even poop without her seeking me out or calling for me to ask me the same irrelevant question again and again.
What will come of all this?
Idk.
Maragret, no, I don't think that stopping your blood pressure med would cause your death. The bigger risk is you'd have a stroke, and not only continue living but be disabled as well. And I doubt that taking your drugs would hasten your husband's death.
A very insightful and thought-provoking book on this subject is "Being Mortal: Medicine and What Matters in the End" by Atul Gawande.
My parents have dementia and I can't imagine anyone wanting to live years and years with a broken brain. Dementia has to cause suffering for the dementia person but also untold suffering for the poor person left to care for them.
One of my clueless relatives (my moms younger sister) is always harping on my parents health and how they should eat this and that (organic foods), stay away from sugar, exercise (she even asked the memory care if they had an exercise room or if they teach yoga and Pilates there.. lol ). She stated once.. maybe they will live into their 100's if they take care of themselves.. wow.... what about me? I would be long gone by then if the stress and expense of having dementia parents continues for that many years.
I feel guilty having thoughts that I don't want them to live for years in the state they are in.. but I also know I would miss them in my life because I do love them. I know if I had dementia or a terminal illness or a severely low quality of life I would do the same as you Sue.. stop all but the meds to control pain (if I had the means and ability to do so).
Sue888- I absolutely agree with you. I plan the same for myself.
Medicine is all about keeping the patient alive, as long as the patient wants to do extraordinary means to STAY alive. Actually, the fear of death is an enormous reason a lot of people hang on so tenaciously. She is kept alive by insulin, cholesterol meds, HBP meds, constant antibiotics....and all whatever else she has. I look at her life and say "absolutely not for me!!".
Mom's QOL of life is ok, I guess. She adores attention and she seems to get that from enough people that she is willing to live a very cloistered life.
Mom's mind is going, and that frustrates her. When she says "What is wrong with me?" b/c she can't remember something, I just say "You have 88 years of memories stored in your brain. Of course you'll forget things."
It's not fair, that's for sure. And I personally HATE that longevity is a big factor in the women in my family. I DO NOT want to live like mother is.
BOTH of my grandmothers were 100% independent until their deaths at ages 94 and 91, respectively. Mother has required 24/7 since she was 72.
In a recent local newspaper article for example, this gentleman use to walk 3 miles a day and always came home. He and his wife were at Costco, when she notice that while walking into the store, he had disappeared. The husband did have dementia but he was doing ok. Frantic searches began, day after day. Eventually his body was found many miles from the store, cause of death the outside elements.
Another person comes to mind, former President Ronald Reagan. To look at him he looked healthy after he had left office, he was horse back riding, etc. One would never know by looking at him that he was dealing with Alzheimier's.