How did elder care used to work?

[GracieJane]

Several people in my life are taking care of aging parents (in their 90s). In one case, the estate pays $17,000 per month for 24/7 caretakers. In the other cases, a child (usually daughter) does the caretaking. Universally it seems to be really hard. There are a lot of doctors visits and tests.

It’s really striking to me how many designated caretakers each elderly person needs. Generally at least one assigned adult, which is more than most children need. Which makes me wonder: what did people used to do historically? I’m assuming nobody had the money to pay for 24 hour caregivers, but did they have adults to watch a parent with Alzheimer’s? Or wash and groom them? Was it servants? 

I’m curious if anyone knows how this worked even 100 years ago.

 

[Starr]

Heath care was different and life expectancy was shorter. And women were home taking care of everyone best they could. 

[Katy]

It was rare to get old enough to get alzheimers. Generally people in nursing homes are on multiple medications that are keeping them alive.

[Nart]

In the past when elderly people became that incapacitated, they rarely lived long. Life expectancy was much shorter as well. 

[Carol in Cal.]

People didn’t last as long once they were frail in earlier times.  So someone might receive care for 6 months, and then a few years later, someone else would need care for a few months, and so on.  It was more often short duration, sequential help.

And also, there were ‘spare’ housewives who could sort of lightly watch over someone in that circumstance, as well as ‘maiden aunts’ who could live in, pretty often.  

I was fascinated to see adult sized cradles in a museum in Vermont.  They looked like coffins with runners.  The materials accompanying this said that if someone was bedridden, the family would put them in these cradles during the day, near the big fireplace, and people would take turns rocking them with their feet, sometimes while doing other chores like spinning.  This helped to prevent bedsores.

Edited March 1, 2022 by Carol in Cal.

[Sharpie]

In my grandparents generation, families were much larger.  The family unit stayed together geographically compared to today.  My grandparents lived with their children in their "retirement years" either alternating between kids a month at a time, or physically living in part of the house while a child lived in the other part. 

My grandparents didn't live as long and health care was a fraction of the cost it currently is.  The entire family rallied to care for them.  It wasn't perfect back then either but the monetary cost was very different.  Hospital beds were set up in living rooms and the caretaker role was split up among the large families.  My dads side had 18 kids, my mom 5.  Five was a small family. 

[1234]

My parents took care of my grandparents and my cousins took care of/are taking care of my aunts and uncles. I remember going to lots of doctor visits with my favorite grandma.  My mom is heathy right now but she is taking complete care of her much older husband, and my siblings and I will work something out to take care of her when she needs it. No one in my family has ever gone into a nursing home but none have had things like Alzheimers either. We’ve just always found a way to have someone with them.

[BusyMom5]

I think that many didn't live in as bad of health for prolonged periods of time.  They did not go to the Dr every week or two for a check-up. It's one reason I think we need to really reconsider before agreeing to procedures, medications, and treatments for every illness.  Having just lost an elderly family member with dementia for the last several years- during Covid- i do not want to ever inflict that on my children. 

Women took care of children, then the elderly, and it was unpaid labor, but still a lot if work.  In my family that I'm aware of, end-of-life type care was relatively short- less than 6 months, and usually more like 1-2 months from the first major episode.  

[freesia]

Idk totally. I know my grandmother cared for her MIL in her last years (1960’s) and it was so hard she swore never to do that to her kids. She was in a graduated senior living situation and died in a nice nursing home. My other grandmother died in the 1970’s in a nursing home. My great-great grandmother lived into her 90’s and was a tyrant to the end, cared for by spinster daughters at home. The stories are legendary. She died in the 30’s. So, I don’t know if it was ever easy, but I do think/know that far fewer people lived past their 60’s which meant the care was shorter. 

[prairiewindmomma]

We also have handed down family stories about elder care. None of them are pleasant. 

Before the 1960s, we didn't really have any sort of effective cancer treatment.  Cancer was a death sentence, and without prolonged treatment, even if a mastectomy or radiation through X-rays or the like was attempted, death often followed within a couple of years. Heart bypass and angioplasty likewise didn't become available until the 1960s.  People died much younger. 

While most families didn't have the finances for hired care, some did.  One side of my family hired in-home nurses in addition to the other house staff. (On the other side, great-great-granny was apparently locked in a room occasionally to keep her from wandering.) Still, that was far better than the poorhouse. https://socialwelfare.library.vcu.edu/issues/poor-relief-almshouse/

[kristin0713]

My grandmother, who lived into her 90's, took care of her mother, who lived to be almost 100, who also took care of her mother who also lived well into her 90's.  But like others have said, people are living longer today because of the medical care that we have that was not available way back when. 

[Innisfree]

In general, once people became seriously ill, they died faster.

Remember, antibiotics weren't widely available until after WWII. 

Lifespans weren't necessarily shorter, once higher infant, childhood, and childbirth mortality are factored out. Lots of folks made it into their seventies and eighties. But anything we'd treat today with antibiotics had the potential to kill, often quickly.

Today we have technology which lets us diagnose and treat people, we do surgeries which are practically miraculous, we treat infections with antibiotics.  People survive conditions which would have killed their great grandparents.  That means that in old age, they linger in a frail state for longer.

In the past, family members or paid (or, let's face it, unpaid enslaved) caregivers looked after the elderly and ill. It just didn't always last as long. Sometimes it still lasted for years. 

[Shoeless]

Cancer and other diseases were not detected as early as they are today. By the time great grandpa was diagnosed with cancer, it was advanced and there was nothing to be done about it. There weren't decent meds to treat high blood pressure until the 1950s. 

Basically, people were mostly fine until one day they weren't fine, and then they died. They needed a few months of care and then they were gone.  Women were home, multigenerational living was more common, and the family could manage for a few months.

Modern medicine has extended the quantity of life for a lot of people, but it doesn't always improve the quality.

[KidsHappen]

Multigenerational households. In my family my great grandma lived with my grandma, my grandma lived with my mom and her brothers, my mom lived with us. When the grandparents were younger they helped with the grandkids and then as the grandkids got older they helped with the grandparents. When my larger extended family lived close we all got together every evening for dinner and tasks were divided. Once people reached a point of needing end of life care they usually moved to nursing homes but I do remember hospital beds in living areas where people aged at home until the very end. Plus back then not a lot of the women worked so they were available to help care for elders and in general to help each other out. 

[catz]

People died much faster.  Expectations for care were not what they are now.  

[Acorn]

All of my grandparents died between ages 45-75. One of them did need nursing home care for about a year.  The rest died suddenly at home or acute inpatient. 
I knew one of my great grandparents. She spent two months at a time in the homes of each daughter. 

Edited March 1, 2022 by Acorn

[Grace Hopper]

All of the above. Families didn't spread out quite so much before modern transportation, now folks move away from family for college, jobs and other reasons. I believe it was an expectation that homemakers would take care of their elders and probably had more family, friends and neighbors near enough to share the load. I don’t think it was ever easy, but I don’t think it was a multi year responsibility as it is these days, with life extending medical technology. 
 

I also think people had lower expectations for activities and entertainment, and getting their own way when living in community, the kind of things that can exhaust caregivers. 

[Laura Corin]

My paternal grandmother had a stroke, was cared for at home by my grandfather and a visiting NHS nurse, but didn't live much longer - 1970s. My paternal grandfather was diagnosed with advanced cancer and died a few weeks later in hospital - 1990s. My maternal grandfather died after a short illness - 1950s.  My maternal grandmother did not have a natural death - 1970s.

No long illnesses. No dementia.

 

Edited March 1, 2022 by Laura Corin

[shawthorne44]

My Great-Aunt had her life basically destroyed by this.   The expectation was that the youngest daughter was the caretaker.   She was the youngest daughter and her grandmother needed to be moved every couple of hours otherwise bed sores and there were diapers.  Caring for someone 24/7 leaves no time for socializing and courting.   But that was OK, because the youngest daughter was supposed to be a spinster and care for everyone else.   
She ended up marrying the first person who asked her.   He was scum.    Only thing I can say good about him was that he likely didn't abuse children because a child wouldn't get close to him.   

[Annie G]

My grandfather had cancer and died at home after about 6 months of my grandmother caring for him. (1950’s) My grandma has a stroke and died in her sleep (1960’s)  My great grandmother died at home at age 96, and her son and his wife cared for her for a few years until she passed. (1960’s). My grandfather passed at home after about a month of my grandmother caring for him with occasional help from a woman they knew.  (1970’s).  My grandmother lived with my parents after I moved out and they cared for her, with me occasionally helping, until it became too much for us and she was put into a nursing home, where she had a heart attack and passed. 
Dh’s family history is much the same.  Most family members were cared for between 6 months and 3 years before they passed. 
 

Our most recent experience is with MIL,who had dementia and cancer, and we tag teamed her care for about 2 years between FIL, us, and dh’s sister/her dh.  Had no help until the last month, and then only a few times a week for an hour or two.  They could afford more care but didn’t want it. It was a big mistake, but not my decision to make.

[Katy]

I read something about how Queen Elizabeth’s grandfather’s death was “hastened” by his doctor to hit the morning papers instead of the evening ones. I’ve also heard stories of a doctor telling an older relative how much morphine would put his dying of cancer mother “out of her misery.” And I heard a story from a WWII soldier when I was a kid that they had a guy who had been shot, he was doing the death rattle breathing, and they were hiding. The Japanese were searching for them and that death rattle was so loud they knew they would all be found and killed, so they injected his vein with a shot of air so he would die quickly.

I wonder how frequently that happened in history, if someone was clearly dying soon anyway. 

When I was in nursing school I had a patient who was dying and their 60 year old children weren’t ready so they were repeatedly resuscitated, and they weren’t fully conscious so it was only prolonging suffering. The nurses started prolonging rounds to the legal limit, hoping he would pass in between rounds and not found in a state needed to be resuscitated. He was resuscitated three times before they finally decided to let him go.

[Mrs Tiggywinkle]

People often lived long, but they didn’t live sick as long.  They weren’t bed confined for years on end.

Most of my great grandparents and especially my great great grandparents had large(10+ kids) farming families. A couple kids and their spouses and grandkids would live on the farm and care for them when they got old. One great great grandmother rotated houses among her daughters, she’d stay for a month at a time. She had seven daughters and all lived close together, so it worked.  Some in my family formed multigenerational households.  Single women lived at home; women weren’t working outside the home and better able to care for their parents.

My grandmother is in her late 80s and has advanced Parkinson’s.  She will not consider a nursing home.  She absolutely expects family to care for her, because she grew up with grandparents being cared for next door and other elderly family members in multigenerational living arrangements with ten or eleven children and hundreds of progeny nearby(I have one set of great-great grandparents who had over 120 living descendants when they died). I don’t know if it’s old age or stubbornness or what, because she’s very intelligent and usually grasps nuances, but she can’t seem to make the leap that she is close to bed bound and she doesn’t have 120 descendants who live nearby.  My mom is it. Six of my seven sisters have moved states away and the one remaining is disabled. I work 60 hours a week and my one remaining local cousin and my aunt also both work full time.  But she didn’t save money specifically to pay for round the clock care and won’t consider draining her assets in a nursing home and going on Medicaid.  It’s magical thinking, which I see a lot of in elderly people.  My mom is bad at boundaries and frankly likes to be the martyr, but she has two grandkids across the country she’s never even met because she can’t leave my grandmother for more than a few hours. Even when they finally made the decision to hire help, all the home care agencies have long waiting lists, the one girl they hired privately called off or forgot the first three days she was supposed to work and the other one had surgery and is out for two months.

Elder care is a nightmare in today’s culture on so many levels.  

Edited March 1, 2022 by Mrs Tiggywinkle

[73349]

100 years ago...

no emergency medical care (e.g., EMT services) in most places, and a less urbanized population without quick transportation to hospitals;

no antibiotics;

no complex diagnostic tools like MRIs or even EKGs in most hospitals;

minimal effective treatment for cancer even if it was detected;

fewer workplace protections (fire, carcinogens, machinery).

 

Most people just died quickly if they developed any serious illness.

[GracieJane]

15 minutes ago, Mrs Tiggywinkle said:

People often lived long, but they didn’t live sick as long.  They weren’t bed confined for years on end.

Most of my great grandparents and especially my great great grandparents had large(10+ kids) farming families. A couple kids and their spouses and grandkids would live on the farm and care for them when they got old. One great great grandmother rotated houses among her daughters, she’d stay for a month at a time. She had seven daughters and all lived close together, so it worked.  Some in my family formed multigenerational households.  Single women lived at home; women weren’t working outside the home and better able to care for their parents.

My grandmother is in her late 80s and has advanced Parkinson’s.  She will not consider a nursing home.  She absolutely expects family to care for her, because she grew up with grandparents being cared for next door and other elderly family members in multigenerational living arrangements with ten or eleven children and hundreds of progeny nearby(I have one set of great-great grandparents who had over 120 living descendants when they died). I don’t know if it’s old age or stubbornness or what, because she’s very intelligent and usually grasps nuances, but she can’t seem to make the leap that she is close to bed bound and she doesn’t have 120 descendants who live nearby.  My mom is it. Six of my seven sisters have moved states away and the one remaining is disabled. I work 60 hours a week and my one remaining local cousin and my aunt also both work full time.  But she didn’t save money specifically to pay for round the clock care and won’t consider draining her assets in a nursing home and going on Medicaid.  It’s magical thinking, which I see a lot of in elderly people.  My mom is bad at boundaries and frankly likes to be the martyr, but she has two grandkids across the country she’s never even met because she can’t leave my grandmother for more than a few hours. Even when they finally made the decision to hire help, all the home care agencies have long waiting lists, the one girl they hired privately called off or forgot the first three days she was supposed to work and the other one had surgery and is out for two months.

Elder care is a nightmare in today’s culture on so many levels.  

I’m seeing a lot of elderly people who are not able to be alone for a few hours, which means they need a designated adult who is with them at all times. That’s what got me so interested in this shift; are adult children just more „selfish“ nowadays because they outsource this task to a paid non-family member, and in former days women just did this routinely? It seems like a „new“ issue, but I’m wondering if it’s the adult children or the aging parent who are not what they used to be historically (it that makes sense).

[Katy]

3 minutes ago, GracieJane said:

I’m seeing a lot of elderly people who are not able to be alone for a few hours, which means they need a designated adult who is with them at all times. That’s what got me so interested in this shift; are adult children just more „selfish“ nowadays because they outsource this task to a paid non-family member, and in former days women just did this routinely? It seems like a „new“ issue, but I’m wondering if it’s the adult children or the aging parent who are not what they used to be historically (it that makes sense).

I suspect if someone was in the house with them anyway it was one thing, but when people had to work or starve     people were left alone. If they wandered off or set the house on fire they would die. 

[mlktwins]

1 hour ago, GracieJane said:

I’m seeing a lot of elderly people who are not able to be alone for a few hours, which means they need a designated adult who is with them at all times. That’s what got me so interested in this shift; are adult children just more „selfish“ nowadays because they outsource this task to a paid non-family member, and in former days women just did this routinely? It seems like a „new“ issue, but I’m wondering if it’s the adult children or the aging parent who are not what they used to be historically (it that makes sense).

I think a factor today is that people are having children later in life and this makes it difficult for them to care for their elders without paid help. The sandwich generation is no joke! Speaking from experience, I am 54 with twin 16 year olfs who are homeschooled. I have been caring for my dad for 3.5 years and my in-laws required a lot of care their last couple of months of life. I would have more in my tank to care for my dad if I was not also still raising my kids. 

Edited March 2, 2022 by mlktwins
should not type on my phone -- LOL

[GoVanGogh]

Cancer and high blood pressure have been mentioned upthread, but diabetes is a major health care crisis in today’s society. Insulin wasn’t around 100 years ago, but neither were highly processed, calorie heavy foods. What percentage of the population today has type two diabetes? That often leads to complications, putting them at risk of amputation and higher risk for stroke/heart attacks. Insulin keeps patients alive much longer today, but also puts the emphasis on meds and not lifestyle changes. 

 

Edited March 2, 2022 by GoVanGogh

[Carrie12345]

Even in more recent times, my family members have been cared for by family members in their “frail/old/need some assistance” stages, but turned to professional care when round the clock/intense care became needed. Because there’s care, and then there’s CARE.  I don’t think many people got to the point of long-term CARE way back when.
 

[Tap]

My mom has nursed many people from serious illness thru to their deaths.

My maternal grandfather

My paternal grandfather

My father 

My maternal grandmother

My maternal aunt an 2 uncles. 

of the 7 above, 4 passed away in her home, 2 in another home while she cared for them and 1 in the hospital just hours before he was to be discharged to her home after a hospital stay.

She and many others in my family have done the same. Generation after generation. She is now the one being cared for and will likely be the next to pass away in the same home. The house is over 100 years old. I wonder how many people took their last breath there ❤️

[Bootsie]

Three of my grandparents died 50ish years ago.  Grandfather 1--dropped dead; Grandfather 2 died 3 months after being diagnosed with cancer; Grandmother 1 had a stroke that left her bedridden--she lived for about 2 years; she was in a nursing home for a while, but one of her daughters wanted to move her home and take care of her, that was too much for her daughter to do alone, a young adult cousin was hired to be a sitter during the day (no professional training and was probably paid a low wage).  My fourth grandparent died in her 80s.  She lived alone until the last six months or so of her life after a broken hip left her bedridden and she was in a nursing home.  

One great grandparent (dad's grandmother) was in a nursing home when I was a small child; I was fairly young when she died so I don't know the details.  I know that my mother's maternal grandmother lost her hearing as an adult.  She had five daughters and would stay with each one for 6 months or so at a time; I do not know that she needed much health care and died by the time she was in her early 70s.  I don't know of any long-term health issues of any of my other great grandparents, but they all died more than 70 years ago. 

[JennyD]

All of my grandparents -- and DH's grandparents -- died after relatively short illnesses.  Both of my grandfathers literally dropped down dead from heart attacks -- one at 65 and the other at 73.  None of them required years of extensive caretaking, as is so often needed today.

In my extended family, there are a couple of instances in which a daughter never married and instead spent her life living with and caring for her parents until they both died.  Not a great model for elder care, IMO.

[HS Mom in NC]

100 years ago families were much bigger, meaning care was divided between more people.  Both my maternal grandparents were born in 1922 and one was of a 7 child sibling set and one was of a 10 surviving sibling set (I forget if it was 2 or 3 babies that died.) Neither were Catholic or Mormon. (The two groups in the US with larger than average sibling sets.) That meant lots of adult children, adult grandchildren, adult nieces, and adult nephews to help with eldercare.  Most people didn't move far away then.

People married younger, had babies younger, empty nested younger.  Most women didn't work outside the home-home kept them sooooo freaking busy with all those babies and society pooh poohed the idea for white women.  When they were empty nesters, they weren't working for pay outside their homes, they were helping postpartum daughters and daughter-in-law and any elders that needed it.   

100 years ago there wasn't much in the way of preventive medicine.  If you had high blood pressure, you had a massive stroke and died immediately or quickly.  If you had a heart blockage, you died of a massive heart attack.  If you got an infection, you died if your immune system couldn't get it under control on its own. Cancer killed most people who had it very quickly because chemo and radiation weren't available. I'm going to boldly say it: it's not a bad system.

That's why I'm very interested in not having much in the way of preventive care and testing after a certain point. (Maybe 55 or 60? My baby is 16 now and I'm 49 this year.) I have no interest in doing the "long dwindle." I watched my grandparents and several elderly extended relatives go through eldercare.  Grandad didn't intervene for his leukemia and had hospice care at my mother's house with his family all around.  It was 6 months maximum that he wasn't self-sufficient. Grandmother spent more than 3 years with dementia. That was hell on earth and she had outstanding care.  At first Grandad cared for her at their house, then it was at Mom's house for 2.5 years when Grandad got sick, then when she had her stroke, she was at a hospice facility for that last month of her life. Again, it was outstanding care. I wouldn't wish that ending on my worst enemy.  

Another elderly relative (early 70s) had what was probably a cancerous tumor on his jaw.  He opted not to test or intervene and just had hospice at home.  He died within a few months. That's a much more merciful way to go.

I have no intention of sitting around unable to live a life, stuck in bed or a chair watching TV or being demented which usually means continual confusion, fear, and/or anger.   I have no intention of prolonging the inevitable. I'd give up 10-20 years of longevity for significantly improved quality of life as soon as my youngest child is an adult. If other people want testing, intervention, daily care, a long, slow decline, I think they should get it, but it's not for me.  No.way.

[Frances]

7 hours ago, MissLemon said:

Modern medicine has extended the quantity of life for a lot of people, but it doesn't always improve the quality.

So. Much. This.

[Melissa in Australia]

1 hour ago, HS Mom in NC said:

100 years ago families were much bigger, meaning care was divided between more people.  Both my maternal grandparents were born in 1922 and one was of a 7 child sibling set and one was of a 10 surviving sibling set (I forget if it was 2 or 3 babies that died.) Neither were Catholic or Mormon. (The two groups in the US with larger than average sibling sets.) That meant lots of adult children, adult grandchildren, adult nieces, and adult nephews to help with eldercare.  Most people didn't move far away then.

People married younger, had babies younger, empty nested younger.  Most women didn't work outside the home-home kept them sooooo freaking busy with all those babies and society pooh poohed the idea for white women.  When they were empty nesters, they weren't working for pay outside their homes, they were helping postpartum daughters and daughter-in-law and any elders that needed it.   

100 years ago there wasn't much in the way of preventive medicine.  If you had high blood pressure, you had a massive stroke and died immediately or quickly.  If you had a heart blockage, you died of a massive heart attack.  If you got an infection, you died if your immune system couldn't get it under control on its own. Cancer killed most people who had it very quickly because chemo and radiation weren't available. I'm going to boldly say it: it's not a bad system.

That's why I'm very interested in not having much in the way of preventive care and testing after a certain point. (Maybe 55 or 60? My baby is 16 now and I'm 49 this year.) I have no interest in doing the "long dwindle." I watched my grandparents and several elderly extended relatives go through eldercare.  Grandad didn't intervene for his leukemia and had hospice care at my mother's house with his family all around.  It was 6 months maximum that he wasn't self-sufficient. Grandmother spent more than 3 years with dementia. That was hell on earth and she had outstanding care.  At first Grandad cared for her at their house, then it was at Mom's house for 2.5 years when Grandad got sick, then when she had her stroke, she was at a hospice facility for that last month of her life. Again, it was outstanding care. I wouldn't wish that ending on my worst enemy.  

Another elderly relative (early 70s) had what was probably a cancerous tumor on his jaw.  He opted not to test or intervene and just had hospice at home.  He died within a few months. That's a much more merciful way to go.

I have no intention of sitting around unable to live a life, stuck in bed or a chair watching TV or being demented which usually means continual confusion, fear, and/or anger.   I have no intention of prolonging the inevitable. I'd give up 10-20 years of longevity for significantly improved quality of life as soon as my youngest child is an adult. If other people want testing, intervention, daily care, a long, slow decline, I think they should get it, but it's not for me.  No.way.

One of the people on my street just finished himself 2 weeks ago. it was determined he couldn’t live by himself anymore.  

Edited March 2, 2022 by Melissa in Australia

[Melissa in Australia]

My grandmother looked after her mother for about 7 years  in the 1970s after she had a stroke and was paralysed on one whole side of her body. I remember being a child and visiting and seeing great grandma propped up in a chair, half her face twisted and her arm all twisted up.

[Shoeless]

My grandfather was in his 80's when it was determined he had kidney cancer. The doctors convinced him that having the kidney removed was a good idea. Grandpa never left the hospital after the surgery; he threw a blood clot and died. The last two weeks of his life was misery in post op "recovery" from this stupid, pointless surgery. 

What was the point? It was a slow-growing cancer that was unlikely to kill him within 5 years.  He was 82, for crying out loud. How many more years did they really think he had in him?

That's the kind of stuff that needs to stop, IMO.

[regentrude]

My grandmother took in her mother when she couldn't live alone anymore at 88. That went fine for seven years until great grandma had a stroke at 95 and spent her last year in a nursing home needing full time medical care.

When we talk about causes of death, let's not forget war. My great grandfather was shot dead in the war. My grandfather was shot dead in the next war. 

(Btw, at least in my country, 100 years ago, lots of women worked. My great grandmother born in 1890 did, as did my grandmother b.1915. All those widows had to support themselves and their kids.)

 

[Arcadia]

7 hours ago, GracieJane said:

It seems like a „new“ issue, but I’m wondering if it’s the adult children or the aging parent who are not what they used to be historically (it that makes sense).

My grandparents all passed away before they reach 80 years old. I was 11 years old when my last grandparent died. None of them needed 24/7 care and none needed a wheelchair or was bedridden. 
My husband’s grandma passed away after she turned 100. He was 48 years old and his parents were 73 and 81 years old. His late grandma needed a live in help because she has dementia for close to twenty years and was wheelchair bound for the last few years.

Medical advances have increased longevity for my parents generation but not necessarily maintained their quality of life. 

[Katy]

6 hours ago, MissLemon said:

My grandfather was in his 80's when it was determined he had kidney cancer. The doctors convinced him that having the kidney removed was a good idea. Grandpa never left the hospital after the surgery; he threw a blood clot and died. The last two weeks of his life was misery in post op "recovery" from this stupid, pointless surgery. 

What was the point? It was a slow-growing cancer that was unlikely to kill him within 5 years.  He was 82, for crying out loud. How many more years did they really think he had in him?

That's the kind of stuff that needs to stop, IMO.

This is actually a controversial area of medicine. When doctors decide these things for themselves they are much more likely to treat aggressively. When deciding for patients they are much less likely to suggest anything aggressive. Many people think it’s age discrimination and that unless you have dementia or some fatal illness it’s best to be aggressive so people can live healthy as long as possible. 

[Laura Corin]

8 minutes ago, Katy said:

This is actually a controversial area of medicine. When doctors decide these things for themselves they are much more likely to treat aggressively. When deciding for patients they are much less likely to suggest anything aggressive. Many people think it’s age discrimination and that unless you have dementia or some fatal illness it’s best to be aggressive so people can live healthy as long as possible. 

It's difficult. My FIL had a heart valve replaced in his 80s. He experienced severe depression after the operation,  which is apparently not uncommon. He had been persuaded to have the operation and regretted it.

[shawthorne44]

Also, if someone was in a multi-generational household, elder care would be easier and more automatic.  There also would usually have been automatic babysitting with multi-generational housing.  

My mother, for example, was largely raised by her grandfather.   My maternal grandmother was the youngest daughter, so she never actually left the house.    She married and they both lived with her father.  My grandparents owned and ran a pub across the street and it wasn't a problem that they were both working since my mom had her grandfather in the house.   He wasn't feeble until the end and my parents tell stories of him of when they were dating.    

 

[Dmmetler]

My mother and I were talking about this the other day. The fact is, had she been able to respond, and had the hospital gotten in touch with me much earlier, had it not been a MedEvac level situation where they don’t wait, both of us would have declined that first wave of treatment,  because she had been clear that she didn’t want to go on a ventilator. Once she was on, though, and had survived the first surgery, she’s fought every step of the way. She wants to live, but more importantly, she wants to go home and get her life back. But she’s also stated that she’s added “God, when it’s time to go, please take me quickly” to her prayers, because she has had two months of being totally dependent on others, with hope and clear signs that things were getting better, and doesn’t feel she could handle it without the hope of improvement. 
 

And I have to be honest, I couldn’t handle it either. This has been hard enough. 

[HS Mom in NC]

8 hours ago, Melissa in Australia said:

One of the people on my street just finished himself 2 weeks ago. it was determined he couldn’t live by himself anymore.  

That's too bad.  I'm sure it was traumatic for his loved ones.  I'm not opposed to living in a care facility or with relatives at the end, but I don't want that last chapter to run for years in a state of constant confusion where I can't really live and I just wait to die.

My dad (79) is an example of something I didn't really understand. He wants to live completely alone and independently, which I get, but know it's unrealistic.  Usually people need help, even in the old way, for at least a while, maybe a few months.  He has said he wants to die quickly.  10 years ago he was diagnosed with a heart blockage the doctor called The Widow Maker  because it's completely asymptomatic then causes a massive heart attack killing the person before they hit the ground. Sounds like the death he says he wants. Now here's the weird part, he opted to have the surgery to remove it before he told us about it.   I said nothing; he's a grown man fully mentally competent to make his own decisions. But I'm worried he traded the death he wanted and will get a much longer, much more dependent ending where he's absolutely miserable for years.

[Mrs Tiggywinkle]

1 hour ago, Katy said:

This is actually a controversial area of medicine. When doctors decide these things for themselves they are much more likely to treat aggressively. When deciding for patients they are much less likely to suggest anything aggressive. Many people think it’s age discrimination and that unless you have dementia or some fatal illness it’s best to be aggressive so people can live healthy as long as possible. 

And I can’t tell you how many people sign DNRs and when they pass at home, the family calls 911 and demands everything done.  Doctors(not all, but many) dance around the death conversation. They don’t explain to families and patients that most of the time CPR and all it entails is violent and futile.  Doctors don’t want to have end of life discussions and don’t want to suggest anything less than aggressive treatment, because so often they get such pushback by the families and even the patient

Also—remember that the primary care doctors are usually not the ones who see the end of life decline and issues.  When it gets really bad, that’s the ER doctors, ICU doctors, hospitalists and nursing home or home care providers.   PCPs aren’t involved when things get really bad.

[skimomma]

I think changing ethics are also a factor.  I am dealing with someone who has dementia but is otherwise physically healthy when properly medicated.  They could very well live for 10+ more years.  But they cannot live alone or even be left alone by today's standards whereas, they probably would/could have 50 years ago.  The reasons they cannot live alone now is that they cannot manage their complicated medication regimen (most of which did not exist 50 years ago) and is prone to getting lost (something that might have been an acceptable risk 50 years ago).  In these times, it is my ethical obligation to protect them from these risks whereas 50 years ago, they would probably still be living alone and called "eccentric."  They will now live in their demented state for much longer due to my "ethical obligation" to be sure they are treated for medical problems that would end their life much earlier 50 years ago.  

[Clemsondana]

I also wonder if the push to get to college and on a career path affects this.  These days a young adult without a particular career direction is often encouraged to pick something, anything, and get a degree or get a job.  I'd expect that historically these people might have helped the family for a year or 2 - a nanny for a relative with littles, a part-time caregiver who lived with an elderly relative, someone who helped out around the family farm/business to take over some of the burden from an aging person.  We don't think in those terms much any more, or feel that the person is being taken advantage of.  Obviously, like any situation this could be done in a way that is detrimental to the people involved, but I'm not confident that a young adult get a job and then the family paying a home health aide is always a better choice than having family take care of it and contribute to paying/providing room and board for the young adult.  We don't want to see kids get stuck or derail somebody's career path, but I wonder if this could be a short-term solution more often than it is for some families.  

[Pam in CT]

Economically, "spinsters" had no option but to attach themselves as unpaid household workers; and medically, incapacitated people seldom lived very long. 

Between that greater-than-nowadays supply of unpaid labor, and that vastly lower-than-nowadays demand for longterm care services, the "market" roughly cleared. 

 

It is, obviously, better that people today have more economic options and people today live longer. But it's created a huge and hard-to-address need that once was much smaller.

[wathe]

2 hours ago, Mrs Tiggywinkle said:

And I can’t tell you how many people sign DNRs and when they pass at home, the family calls 911 and demands everything done.  Doctors(not all, but many) dance around the death conversation. They don’t explain to families and patients that most of the time CPR and all it entails is violent and futile.  Doctors don’t want to have end of life discussions and don’t want to suggest anything less than aggressive treatment, because so often they get such pushback by the families and even the patient

Also—remember that the primary care doctors are usually not the ones who see the end of life decline and issues.  When it gets really bad, that’s the ER doctors, ICU doctors, hospitalists and nursing home or home care providers.   PCPs aren’t involved when things get really bad.

Worst possible circumstances to initiate goals of care discussions:  While in crisis, in an overcrowded ED with 6 hour wait times and 45 in the waiting room, on a hallway stretcher, with a distracted doc who has several other critical cases on the go, by phone with multiple different POAs who all have different opinions and none whom have realistic expectations about what resuscitation actually involves or probable outcomes because real medicine is nothing like Grey's Anatomy  or whatever other medical drama is in vogue. 

High proportion of actual goals of care discussions:  see above.

[wathe]

I'll add:  decision making in the kind of scenario above becomes necessarily paternalistic - the patient or POA is simply not equipped to make a genuine, patient centred decisions in these circumstances.

Really great, patient-centred, goals-of-care planning needs time and space.  Patients and POAs need a realistic understanding of their state of health, and realistic expectations about what might happen next, and what the probable outcomes of their decisions will be and  how each decisions will help them to achieve their goals of care.   This does happen.  Some of our nursing homes are really, really good at this.  Our palliative care service is excellent at this.  Doing it well is difficult - it takes a lot of time.  (Time that's usually not properly remunerated for providers.)

Everyone should read "Being Mortal".

[Mrs Tiggywinkle]

10 minutes ago, wathe said:

Worst possible circumstances to initiate goals of care discussions:  While in crisis, in an overcrowded ED with 6 hour wait times and 45 in the waiting room, on a hallway stretcher, with a distracted doc who has several other critical cases on the go, by phone with multiple different POAs who all have different opinions and none whom have realistic expectations about what resuscitation actually involves or probable outcomes because real medicine is nothing like Grey's Anatomy  or whatever other medical drama is in vogue. 

High proportion of actual goals of care discussions:  see above.

Yep.  I should have clarified that I meant primary care physicians tend to not have these conversations. Unfortunately it seems to get dumped on emergency physicians; with a heightened, emotional family who doesn’t know the doctor and doesn’t understand.

My 85 year old grandfather had a massive heart attack, had a stent put in and then went into third degree heart block that he didn’t come out of.  Trying to have the DNR discussion at that point was ridiculous and his primary care doctor should have discussed his wishes years before when his health turned. It didn’t help that the resident cardiologist assured my family it was not a fatal heart rhythm(I said, well not yet, but he can’t live in a third degree block forever) and a pacemaker would solve everything, regardless of the fact that the heart attack had been massive, he had significant damage and would have CHF now, had dementia and uncontrollable diabetes anyway, but no one wanted to talk about his quality of life.  He got the pacemaker and passed away the next day anyway, and fortunately there was a DNR in place by then.  But none of the cardiology team or the hospitalist ever asked about his quality of life.

I know this is my soapbox.  But attempting resuscitation on an elderly body that I know is futile but the family is expecting great grandma to sit up and hug everyone after I shock their fibbing heart is one of the most traumatic things ever. At least to me, and my own personal experience.

Someday my kids will be asked if they know my end of life wishes; if we’ve discussed them. And my kids will be able to say, yep, Mom has been discussing them with us since we were four!

All that to say, if you haven’t, please discuss your end of life wishes with your family.