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I agree. My mom still has quality of life at 91, but my aunt who passed away recently had declined into what was a miserable existence. Hard to believe when I think back to her younger years. she was sharp, bright, and very quick witted. I didn't know her passing would hit me so hard
My step father is 90, he has been on dialysis for 6 years, has bladder cancer, heart issues, high blood pressure, is in diapers....and totally deaf. The dialysis is keeping him alive...I guess...he has no quality of life. The doctors keep him alive because they make a fortune on him...last year alone 2.2 million dollars was paid by Medicare. This is a travesty!
I share your frustration. My spouse and I often discuss the state of our parents and we wonder what value these final years are to them. All of them have expressed the wish to go to sleep and not wake up. I really believe they are just tired of living at this point (95, 89, 85). That said, these choices are so individual, it is impossible to decide what is "right" for any individual. It's up to the individual and their loved ones to try to navigate and make the appropriate choices. I guess I'm fortunate my parents have been clear about their wishes, but it still leave a lot of grey area I have to navigate.
She was put on Arricept (sp ?) and it's making her miserable- cramps, diarrhea- and it's seriously taking away any quality of life she may have left.
We decided to halt the drug for a bit- it's not like her Alzheimer's is going to disappear anyway and there is NO clinical proof it even does anything at all.
Has anyone else stopped this dreadful medication because of the side-effects? At least if it were chemotherapy for cancer, there would be a goal or possible positive outcome to compensate for the misery it inflicts.
I'm wholly supportive of your point of view, David, as long as you and your wife discussed this with the prescribing doctor (I'm sure you did).
There is a very interesting article about the use of dementia medications on Healthline, which quotes the apposite term "indication creep" - nice description of the problem, I don't know who coined the term.
I suspect it's one of those situations where communication breakdown is a big factor in the problem. People read the newspapers, and go to their doctor saying "can we try this?" and instead of taking the time - which to be fair they don't really have - to do the risk v. benefit analysis PLUS explain all that to the hopeful patient and family members, doctors have a strong incentive to say "sure let's try it, why not."
I actually do blame the media, more than I do anyone else. Stupid headlines, stupid half-baked articles, stupid hyperbole; and then if you live with a competitive healthcare system, where enthusiastic doctors offering novel treatments are going to attract more patients than conservative sceptical ones with no hopeful alternatives to offer, it isn't surprising that doctors feel they have to try *something*.
Unless I am wrong and I have missed studies, there is no alzheimer's drug that is clinically proven. Basically our elders become another cash vending machine for our medical industry. And it is an industry. They are cash cows. It makes good sense to at some point have power of attorney that says that you would want to have palliative care only when you reach a time of being unable to care for yourself and more importantly make your own decisions. If you have an ongoing MD let him or her know that today. Those of us dealing with end of life issues that we are know this. The general population doesn't. You are so right to scream, as it is so worth screaming over.
Sometimes we need to look at the elders who keep wanting tests.
I remember taking my Mom for her yearly mammogram. Been doing this for years. She was now 97 years old. Her doctor tried to talk her out of doing this years ago, but Mom insisted. The mammograms were terrible for her as she had now had a bent back, couldn't keep her balance, so it took two techs to help her. The reason Mom insisted on having this test was due to her sister passing away from breast cancer 40 years prior. None of my Mom's other elderly sisters ever had this cancer.
Mom insisted on having her yearly appointment with her oncologist who said she didn't need to come anymore. Same with her audiologist as that doctor said there wasn't anything more she could do. Same with her urologist. Dermatologist. And a bunch of other "ologists".
My Mom didn't die from anything related to the above doctors. She died from complications from a serious fall.... refused to use a walker.... [sigh].
Apologies for following my tangent, but I just wanted to back up my mini-rant about reporting with this prime example.
Headline in my (eminently respectable) newspaper yesterday:
"CONCEIVING IN WINTER RAISES LEARNING DISABILITY RISK"
Before anyone is alarmed, the headline should be: "Vitamin D is important."
The kicker is the penultimate paragraph of the article. 'Dr Claire Hastie, who conducted the analysis, said: "We really hope the study does not worry pregnant women. We hope this is just useful information so people know it would be a good idea to get supplements, especially in a high-latitude country like Scotland. The risk is still tiny." '
I wonder what Dr Hastie's reaction to that headline was, given that we are now in late June and women who did conceive in February, March and April - when Vitamin D reserves tend to be lowest - will be hyper-alert to all such concerns.
If I were a scientific researcher I wouldn't let a journalist within five miles of my lab.
freqflyer, wow about the mammograms for your mother! My mother had her last mammogram at age 90, and at that time the doctor suggested a 2-year schedule. (This was the last time I was permitted back with her until she was hospitalized/then rehab/then NH this past fall). My mother said the past mamogram really hurt and the technician was nasty, so that was the reason she didn't insist upon a yearly mammogram.
She was never going to undergo chemo or radiation if there was cancer, and I told her that. But she said she might just have the surgery, then. I thought otherwise, but, as usual, said nothing.
If she'd scheduled the mammogram, I was going to drive her there and then pick her up (my job as the dummy daughter driver), but I was NOT going to stay with her and become her personal care attendant. And that's what she would have needed -- someone to hear her name called, bring her to the back, help her get undressed to put the gown on, help her to put her clothes in the locker and keep the key, hear her name called to go back to the mammogram room...and then reverse the whole process. Nope. If the medical monopoly wanted her money for a useless mammogram (and get more than they should have, because she got no discount for having one breast), then they were going to earn it by taking total care of her while there instead of me.
I have observed many people wanting to restrict their elderly parents activities because "they might have a heart attack/stroke and die". I think this is the worse possible reason to try to restrict an activity. Someone in their 80s or 90s has lived a full life and completed their family responsibilities. They should be able to garden or take long wakes or go fishing or ride/work horses or golf or whatever and if they have that major heart attack or stroke and die then that's the right way to die in my opinion - still on your feet doing what you enjoyed till the day you died.
As my mother aged, I did ask her to avoid doing some of her yard work during 90+ degree weather and do it earlier or later in the day (when it was only 80+ degrees), but I never asked her to stop. Now that Mom is restricted to a walker or wheelchair, we have more plants in the house and vegetables in planters on/around the porches. I am looking for a good used golf cart so that we can drive around the yard.
Now that Mom's aging and cognitive decline has started to impact her quality of life, I have stopped (as per Mom's earlier directions) the mammograms and other tests for cancers; any treatments would be restricted to reducing pain and side effects, not curative. Although Mom's general health is good and she could easily live another 5+ years, she is not strong enough to endure chemo and I see no reason to allow medical treatments to turn any remaining good days into torture in some hope of extending the shear number of those days.
I will admit turning the page to this phase of Mom's life has been difficult for me. As someone who has advocated that Mom be treated by the state of her health and activity level not just her age for more than a decade, I had great difficulty accepting she could not really recover from this last fall; that Mom took her last long walk just a couple of hours before that fall. I worry about the cognitive decline that followed the fall is a result of the down time when she couldn't walk at all and was confined to just her room. I know seniors often become disorientated during hospital stays and I wonder if being confined to the room and her bed caused a similar disorientation. With PT, she was walking again with the walker and cognitively improving when my father died. Following Dad's death, she began having "time displacement" ?? episodes where she thinks it's 30-60 years ago but usually snaps out of that when you ask her how old she is and how old she was in that memory, yet in the last month there's only been 1 of those. I'm left thinking Mom is cognitively fragile but not certain if she's really advanced from MCI to the dementia zone yet. This last week she has started several conversations about newspaper articles and is moving around the house much better; much closer cognitively to her pre-fall status. I pray Mom's current reasonably good quality of life (some pain with and following movement but nothing that cannot be relieved, able to enjoy company and short trips) continues until her death.
Almost 2 years ago, my mother was diagnosed with congestive heart failure. The doctor started discussing medications with me and I immediately interrupted with the question, "for what purpose?" As I pointed out to the doctor, mum is 90 years old and had just pissed herself 10 minutes prior sitting on the exam table. She didn't understand a single question they had asked her during the appointment. What exactly are we trying to save here?
I got a dumbfounded, speechless look in return.
Don't get me wrong, I'm grateful for those who go into the medical profession in service to us all. But sometimes I think some of them struggle to see the forest for the trees.
I just cannot recommend more to all of sound mind and a certain age that they now discuss this with their doctors and make out the proper medical paperwork. I recommend Barbara Ehrenreich's newest book (the Nickled and Dimed author) Natural Causes, about what we do to the aging. She is my age, I do believe, 76. I stopped mammograms at age 70 and that knowing I had breast cancer 30 years ago. I am perfectly willing to go now, at nearly 77. Just give me the good meds, hospice, palliative care, and usher me gently out, because as a retired RN I have no guts for serious old age. I hope everyone will consider their wishes, set them in chisled stone, discuss with family, do paperwork and appoint a medical poa who will carry forth their wishes when they are unable to.
How true. Health professionals look at you dumbfounded when you say no to a treatment. My husbands younger onset Dementia that causes a lot of drool at times. Of course he thinks if he can fix that he will be well again. Neurologist says “oh we could give you Botox into your saliva gland. A colleague of mine does it”. No “ oh fraid not your wife says no”. His eyesight is regressing. Insists on seeing his GP. Can’t get into see him so insists on another GP who knows nothing about his condition. Says, “I should send you to an ophthalmologist I know”. I say no. DH gets agitated so we go to ophthalmologist who says”Oh, I can do an operation to fix the squint. However it isn’t always successful “. I say no. Pointless. General Anesthesia could make Dementia worse and cause delirium No clue whatsoever. Says, “ I will write to your neurologist and psychiatrist about it”. WHAT. This guy thinks he will go over my head to get his money The sick, elderly and infirmed are nothing but cash cows for many medical professionals and their mates. The GP has a financial benefit in the X-Ray down the road and the pathology place down the street. Gets a kickback on every person sent there or even owns part of it. The specialist is part owner in the private hospital he wants you to have the operation at Handed around and around getting their bills sent off to Medicare and such.
My my father went into nursing home to die. They stopped most of his meds and did palliative care only. That’s how it should be
I would like to add that some of us need to just stop taking our elders to useless medical appointments and check ups. Just say no. My father went to everything his GP suggested because at his age it was all free. All of it including dental. It gave him something to do
Medicare is not "free". Medicare is comprised of several distinct parts. Part A covers hospital care and, for most enrollees, it's free. Part B, which covers doctors visits, and Part D, which covers prescriptions, charge enrollees premiums. In 2019, the standard Part B monthly premium is $135.50 and higher earners pay a surcharge. The cost of Part D varies from plan to plan. Then there's Part C - AKA Medicare Advantage - and premium costs depend on the plan chosen. But it's not free.
Both enrollees and their caregivers seem to forget that Medicare beneficiaries are also responsible for deductibles, coinsurance, and copays. In 2019, the standard Part B deductible is $185 per year and, once met, typically enrollees will pay 20% of the Medicare-approved amount for the services they receive. This often adds up and is far from "free". And original Medicare will not pay for dental care, vision care, and hearing aids.
Ignorant patients and unscrupulous doctors who take advantage of Medicare because they think it's "free" ought to be ashamed. To push back against Medicare waste by unscrupulous doctors and ignorant elders, look at the US Preventive Services Task Force recommendations that are based on a wonderful thing called science, which gives us actual evidence of what works and what does not work.
NYDIL - that was a very clear and thorough explanation of Medicare. I am always a bit confused with all the various parts of Medicare and all the plans that many companies send mailers out to get seniors to sign up. I ought to copy your explanation and save it somewhere for when I need it to help my mom.
Pandabear, is your dad on Medicare and Medicaid? That' s how all the treatments could be free.
I looked up the current US budget, the total budget for our whole country is $4.4 TRillion ($4,407,000,000,000).
Social Security's price tag is $1.05 TRillion. Medicare/Medicaid/Health grants total $1.08 TRillion
SS and Healthcare costs eat up almost 50% of the total budget. And that percentage goes up each year. So, no, it's not free at all.
Now, some politicians are pushing to give healthcare to people who come here illegally. So, expect the price tag to go up.
Polarbear, California has just decided to tax legal citizens who cannot afford health insurance, so that they can give free health insurance to non-citizens. Illegal immigrants will now be able to get Medi-cal. While legal citizens who are uninsured (because they don’t qualify for medi-cal and can’t afford private insurance probably because the state is taxing them to death!!!) will be taxed!
Yeah, this is what insane people in charge look like. It's not about anything but votes.
Do the moronic powers that be ever look at sustainability? They will open the flood gates if illegals will get more freebies. So why should anyone work hard to better themselves and have some savings if the government is just going to steal it to pay for vote generating bad ideas?
NYD, that was a terrific summary of the Medicare variations, thank you. I've squinted at many Medicare-related information sites since joining AC, whether out of academic interest or sticking my nose into other posters' business, and they're rarely as lucid.
But all the same - 😭
Regarding taxation and eligibility, we have a parallel brouhaha going on. NHS staff are now officially refusing to require payment from non-UK citizens on the grounds that such demands are racist (no, really, that is the objection). Health "tourism" has long been a problem and no doubt does exist, just as benefits cheats do exist, but then - what's the answer? Medical and nursing staff flatly refuse to go anywhere near the question. Of course it should be the job of administration teams to verify who's paying, but admins trying to do their job in teeth of hostility, or at best indifference, from their clinical colleagues get demoralised and do a terrible job. You can sit in front of tv programmes like 24 Hours in A&E or GPs Behind Closed Doors and find yourself musing on what proportion of the featured patients are ever going to be paying National Insurance Contributions and feeling a bit testy about it; but then which patient would you kick off the ward or snatch a px from? And if you have large untreated populations, then you also have an epidemiology problem: diseases like TB don't respect immigration status.
I couldn't agree more that the situation feels increasingly out of hand and the attempts to get it in hand feel increasingly... inept. But I don't have any suggestions and I don't really expect any government of the kind we'd entertain to have the answers either.
Hmmmm... You can always go uninsured and take your chances, I guess? We can't! But then again, neither do we have to choose which Medicare package to buy. I will count my blessings.
Our health system is geared towards the success of bottom lines and is beholding to stock holders. The patient is just a cash cow for them to pursue their monetary goals. Common sense must prevail for elderly (all) patients. There are a lot of moving parts to make the right decisions based on individual needs, but certainly quality of life and dying with dignity should be a significant part of the equation. Scream into the void indeed....because apparently very few are listening.
I agree with you. I feel the decision to end one's life should rest with the individual. Like abortion. It's a choice the woman makes.
We had wonderful years of golf, tennis, fishing, traveling, etc. especially after retirement. We made sure we had time for fun together. That's how I would like to remember our lives on this planet.
Now at 75, my husband has no short term memory, gets agitated easily, no longer reads, blames me for everything that goes wrong, etc. He wakes up and tells me he wants to die. I told him to let the doctor know. He did last week.
What's in store for him? I have my own health issues. I could go before him. But I would like to hang on. I promised him I would take care of him until death. When?
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So whose to say. Every case is different.
That said, these choices are so individual, it is impossible to decide what is "right" for any individual. It's up to the individual and their loved ones to try to navigate and make the appropriate choices. I guess I'm fortunate my parents have been clear about their wishes, but it still leave a lot of grey area I have to navigate.
She was put on Arricept (sp ?) and it's making her miserable- cramps, diarrhea- and it's seriously taking away any quality of life she may have left.
We decided to halt the drug for a bit- it's not like her Alzheimer's is going to disappear anyway and there is NO clinical proof it even does anything at all.
Has anyone else stopped this dreadful medication because of the side-effects? At least if it were chemotherapy for cancer, there would be a goal or possible positive outcome to compensate for the misery it inflicts.
But this drug has no good outcome. Thoughts?
There is a very interesting article about the use of dementia medications on Healthline, which quotes the apposite term "indication creep" - nice description of the problem, I don't know who coined the term.
I suspect it's one of those situations where communication breakdown is a big factor in the problem. People read the newspapers, and go to their doctor saying "can we try this?" and instead of taking the time - which to be fair they don't really have - to do the risk v. benefit analysis PLUS explain all that to the hopeful patient and family members, doctors have a strong incentive to say "sure let's try it, why not."
I actually do blame the media, more than I do anyone else. Stupid headlines, stupid half-baked articles, stupid hyperbole; and then if you live with a competitive healthcare system, where enthusiastic doctors offering novel treatments are going to attract more patients than conservative sceptical ones with no hopeful alternatives to offer, it isn't surprising that doctors feel they have to try *something*.
I remember taking my Mom for her yearly mammogram. Been doing this for years. She was now 97 years old. Her doctor tried to talk her out of doing this years ago, but Mom insisted. The mammograms were terrible for her as she had now had a bent back, couldn't keep her balance, so it took two techs to help her. The reason Mom insisted on having this test was due to her sister passing away from breast cancer 40 years prior. None of my Mom's other elderly sisters ever had this cancer.
Mom insisted on having her yearly appointment with her oncologist who said she didn't need to come anymore. Same with her audiologist as that doctor said there wasn't anything more she could do. Same with her urologist. Dermatologist. And a bunch of other "ologists".
My Mom didn't die from anything related to the above doctors. She died from complications from a serious fall.... refused to use a walker.... [sigh].
Headline in my (eminently respectable) newspaper yesterday:
"CONCEIVING IN WINTER RAISES LEARNING DISABILITY RISK"
Before anyone is alarmed, the headline should be: "Vitamin D is important."
The kicker is the penultimate paragraph of the article. 'Dr Claire Hastie, who conducted the analysis, said: "We really hope the study does not worry pregnant women. We hope this is just useful information so people know it would be a good idea to get supplements, especially in a high-latitude country like Scotland. The risk is still tiny." '
I wonder what Dr Hastie's reaction to that headline was, given that we are now in late June and women who did conceive in February, March and April - when Vitamin D reserves tend to be lowest - will be hyper-alert to all such concerns.
If I were a scientific researcher I wouldn't let a journalist within five miles of my lab.
She was never going to undergo chemo or radiation if there was cancer, and I told her that. But she said she might just have the surgery, then. I thought otherwise, but, as usual, said nothing.
If she'd scheduled the mammogram, I was going to drive her there and then pick her up (my job as the dummy daughter driver), but I was NOT going to stay with her and become her personal care attendant. And that's what she would have needed -- someone to hear her name called, bring her to the back, help her get undressed to put the gown on, help her to put her clothes in the locker and keep the key, hear her name called to go back to the mammogram room...and then reverse the whole process. Nope. If the medical monopoly wanted her money for a useless mammogram (and get more than they should have, because she got no discount for having one breast), then they were going to earn it by taking total care of her while there instead of me.
As my mother aged, I did ask her to avoid doing some of her yard work during 90+ degree weather and do it earlier or later in the day (when it was only 80+ degrees), but I never asked her to stop. Now that Mom is restricted to a walker or wheelchair, we have more plants in the house and vegetables in planters on/around the porches. I am looking for a good used golf cart so that we can drive around the yard.
Now that Mom's aging and cognitive decline has started to impact her quality of life, I have stopped (as per Mom's earlier directions) the mammograms and other tests for cancers; any treatments would be restricted to reducing pain and side effects, not curative. Although Mom's general health is good and she could easily live another 5+ years, she is not strong enough to endure chemo and I see no reason to allow medical treatments to turn any remaining good days into torture in some hope of extending the shear number of those days.
I will admit turning the page to this phase of Mom's life has been difficult for me. As someone who has advocated that Mom be treated by the state of her health and activity level not just her age for more than a decade, I had great difficulty accepting she could not really recover from this last fall; that Mom took her last long walk just a couple of hours before that fall. I worry about the cognitive decline that followed the fall is a result of the down time when she couldn't walk at all and was confined to just her room. I know seniors often become disorientated during hospital stays and I wonder if being confined to the room and her bed caused a similar disorientation. With PT, she was walking again with the walker and cognitively improving when my father died. Following Dad's death, she began having "time displacement" ?? episodes where she thinks it's 30-60 years ago but usually snaps out of that when you ask her how old she is and how old she was in that memory, yet in the last month there's only been 1 of those. I'm left thinking Mom is cognitively fragile but not certain if she's really advanced from MCI to the dementia zone yet. This last week she has started several conversations about newspaper articles and is moving around the house much better; much closer cognitively to her pre-fall status. I pray Mom's current reasonably good quality of life (some pain with and following movement but nothing that cannot be relieved, able to enjoy company and short trips) continues until her death.
Almost 2 years ago, my mother was diagnosed with congestive heart failure. The doctor started discussing medications with me and I immediately interrupted with the question, "for what purpose?" As I pointed out to the doctor, mum is 90 years old and had just pissed herself 10 minutes prior sitting on the exam table. She didn't understand a single question they had asked her during the appointment. What exactly are we trying to save here?
I got a dumbfounded, speechless look in return.
Don't get me wrong, I'm grateful for those who go into the medical profession in service to us all. But sometimes I think some of them struggle to see the forest for the trees.
The sick, elderly and infirmed are nothing but cash cows for many medical professionals and their mates.
The GP has a financial benefit in the X-Ray down the road and the pathology place down the street. Gets a kickback on every person sent there or even owns part of it. The specialist is part owner in the private hospital he wants you to have the operation at
Handed around and around getting their bills sent off to Medicare and such.
My my father went into nursing home to die. They stopped most of his meds and did palliative care only. That’s how it should be
Both enrollees and their caregivers seem to forget that Medicare beneficiaries are also responsible for deductibles, coinsurance, and copays. In 2019, the standard Part B deductible is $185 per year and, once met, typically enrollees will pay 20% of the Medicare-approved amount for the services they receive. This often adds up and is far from "free". And original Medicare will not pay for dental care, vision care, and hearing aids.
Ignorant patients and unscrupulous doctors who take advantage of Medicare because they think it's "free" ought to be ashamed. To push back against Medicare waste by unscrupulous doctors and ignorant elders, look at the US Preventive Services Task Force recommendations that are based on a wonderful thing called science, which gives us actual evidence of what works and what does not work.
Pandabear, is your dad on Medicare and Medicaid? That' s how all the treatments could be free.
I looked up the current US budget, the total budget for our whole country is $4.4 TRillion ($4,407,000,000,000).
Social Security's price tag is $1.05 TRillion.
Medicare/Medicaid/Health grants total $1.08 TRillion
SS and Healthcare costs eat up almost 50% of the total budget. And that percentage goes up each year. So, no, it's not free at all.
Now, some politicians are pushing to give healthcare to people who come here illegally. So, expect the price tag to go up.
to death!!!) will be taxed!
Do the moronic powers that be ever look at sustainability? They will open the flood gates if illegals will get more freebies. So why should anyone work hard to better themselves and have some savings if the government is just going to steal it to pay for vote generating bad ideas?
This is what no accountability creates.
But all the same - 😭
Regarding taxation and eligibility, we have a parallel brouhaha going on. NHS staff are now officially refusing to require payment from non-UK citizens on the grounds that such demands are racist (no, really, that is the objection). Health "tourism" has long been a problem and no doubt does exist, just as benefits cheats do exist, but then - what's the answer? Medical and nursing staff flatly refuse to go anywhere near the question. Of course it should be the job of administration teams to verify who's paying, but admins trying to do their job in teeth of hostility, or at best indifference, from their clinical colleagues get demoralised and do a terrible job. You can sit in front of tv programmes like 24 Hours in A&E or GPs Behind Closed Doors and find yourself musing on what proportion of the featured patients are ever going to be paying National Insurance Contributions and feeling a bit testy about it; but then which patient would you kick off the ward or snatch a px from? And if you have large untreated populations, then you also have an epidemiology problem: diseases like TB don't respect immigration status.
I couldn't agree more that the situation feels increasingly out of hand and the attempts to get it in hand feel increasingly... inept. But I don't have any suggestions and I don't really expect any government of the kind we'd entertain to have the answers either.
Hmmmm... You can always go uninsured and take your chances, I guess? We can't!
But then again, neither do we have to choose which Medicare package to buy. I will count my blessings.
Scream into the void indeed....because apparently very few are listening.
We had wonderful years of golf, tennis, fishing, traveling, etc. especially after retirement. We made sure we had time for fun together. That's how I would like to remember our lives on this planet.
Now at 75, my husband has no short term memory, gets agitated easily, no longer reads, blames me for everything that goes wrong, etc. He wakes up and tells me he wants to die. I told him to let the doctor know. He did last week.
What's in store for him? I have my own health issues. I could go before him. But I would like to hang on. I promised him I would take care of him until death. When?