Is there a systemic reason why all of us caregivers are suffering so much? And what can we do to change it?

Life spans are increasing but the quality of life isn't. My paternal grandmother lived by herself until her death at age 85 from a stroke. She was a widow for 25 years. My maternal grandfather lived by himself until his death at age 82 from an undetermined cause. He was a widower for 17 years. Neither of my parents were caregivers to their own parents. My dad died in 2004 at age 84 after a month-long illness. My mom didn't want him to die at home. My mom is almost 97 and has needed care at some level (now in memory care) since 2020. She expects to be taken care of and probably would request life -prolonging measures if she were still competent to make such decisions.

Danielle, I like the Anxiety Workbook you recommended to others here on Forum. I have it and have to tell you that it is helping me. It is cognitive therapy which is what I always recommend to others--the only thing I think works.
I find it useful for me as I have always tended toward social anxiety and a bit of agoraphobia. It will show up at certain times for certain reasons and mostly for me the last bout involved breast cancer surgery, then a month of recovery, then radiation, then a month of recovery from THAT and I got myself comfortable, at almost 83, with being in the safe cave of HOME. Now I need to get back out there. Do the things I loved (sewing, gardening, libraries, walking). And it has been difficult.
The Anxiety workbook has given me great insight and some exercises that help a lot.
So thanks for that recommend. I even BRAVED Haight Street yesterday! THAT takes GUTS!

I certainly feel devoured after 10 years of being a primary caregiver for my mother. It changed me, and I’m still struggling to get my life back. I’m in Canada. I have no suggestions, but it’s validating to read your post. Two observations: The Silent Generation is an entitled one, expecting their adult children to give up their lives to care for them. They are also living much longer than previous generations due to advances in medicine.

Everyone is different and it should be taken on a case by case basis. How many are suffering because of circumstances and how many are on the receiving end of systemic issues?

With me, it's the result of circumstances. My parents were north of 40 when I was born. Their bodies were starting to age at the time I was born. My dad started having back and shoulder problems after I was born. My mom has been afraid of things going wrong for most of my life and she told me she thinks there aren't any honest caregivers out there. She also told me while we were talking about an older Facebook friend of mine that's old enough to be her son that she was too weak and feeble to go through a pregnancy at the time she graduated college.

When the caregiving began, I was fresh out of HS. My parents had been divorced for 2+ years and it was all on me for the most part. My mom was 58 and I was closing in on turning 18. My mom did get some outside help for the TMI stuff and she had a friend drive her to work after I left for college and did so for a couple of months. If I was still in town at that time, it likely would've been on me to be the escort. Drop her off in one part of town and then go to the other part of town for HS. My parents weren't the types that regularly sought out help when extra help was needed and would often turn 4-5 person jobs into 2 person jobs, with me getting the majority of the physical work. That wasn't always the case when it came to seeking extra help, but them having a small number of able-bodied friends and living in a small town didn't help matters and I was the youth back that got a lot of work.

And to respond to JoAnn29, you have people who are opting to have kids in their 40s and even 50s. With what I've gone through taking care of one parent sooner than normal and losing the other sooner than normal, no one will convince me that having kids so late in life is a smart move. Should I be childless, unmarried or married to someone around my age, and unable to adopt when I turn 40, I'm not having kids. I don't want my kids to know what I've had to go through to start adulthood. I saw a story from a few years back about an older couple that had a little girl. The mother was 50 and the father was 62. She'll be taking care of at least one of them a lot sooner than normal and we can only hope she doesn't lose her father before she graduates college...or HS.

There is no standardized support system in place. Detailing POAs, general legal aspects. What are nursing homes and other non-in home caregiving required to do and how to determine your loved one's placement. Medical system's overall set up, including basic billing outlined. How to find a good therapist, Online support groups.
Caregivers need help. A good, basic outline of the above could make it easier for many.
For those folks with deeper pockets, perhaps start a scholarship at a local school of nursing.
Be an ombudsman at a local nursing home.
Talk to local and state representatives.
Of course the last two suggestions presumes you have the time and energy to do this. Which is how we get stymied to become more insistent about support. Most, if not all, of us are too exhausted to add one more task to a very large pile.

The boomers are already retired. 1946 to 1964 are the boomer years. Those born in 1946 are now 79. My DH is 68 and retired since 62. My daughter, RN in a NH, says she has a lot of residents younger than us. That means they have children that are still working and probably still raising children of their own. No way can they care 24/7 for a parent. And this will get worse. People are waiting to have children until their 30s. I was 28 with my first and 36 with my second. When I am 85, one will be 58 the other 50. No way can they care for me. They need their jobs to survive.

Hello. I have given this a lot of thought! I am also Gen X (born in 1977). Both my parents were of the "Silent Generation" - people who were children during WWII. I have now been a caregiver for my elderly father (aged 91 this year) for nearly 5 years. Yes, I worry that my physical and mental health will be affected for the longterm (long after my father's death). I doubt very much that I will live as long as my parents (and I don't want to!) This "caregiver" experience, during this present time in human history, is an issue of our time. It's unique. I think there are a few reasons for it. First of all, thanks to modern medicine and surgical intervention, people, possibly for the first time, are living long after their minds have expired. That is why our experiences, for many of us, are so disturbing and perverse. Add to this the trauma that our parents experienced, either directly during WWII (as both of my parents did), or indirectly (if they grew up in North America) and you have people who not only are senile, not only are living to ages well past their natural lifespan (prolonged by medical intervention), but also are affected by war trauma (mental illness, addictions and personality disorders, abusive family dynamics, etc.) ALSO, from what I can gather from others' experiences, OUR parents DID NOT care for THEIR parents, and have no idea. So there is also no appreciation or understanding, just entitlement or complete oblivion. My parents didn't even give one passing thought to aging. The assumption was that they would just keep living, and I would jump in and take care of them. Now, I'm not saying they are to blame or that they made a conscious decision to NOT care for their parents. It was circumstantial, but they were spared the responsibility nonetheless. My father's parents died during WWII. My mother's parents died naturally and early (aged 71 and 80) of age-related illness (heart disease and cancer). So there you go. That is my best guess. The difficulties we are experiencing as caregivers are because of: 1. prolonged life (even after the onset of dementia) due to advanced medical interventions; 2. difficult personalities due to indirect or direct war trauma related to WWII (for parents who were children around the time of WWII); 3. parents who never cared for their aging parents and made absolutely no provisions for their own aging and have no way to relate to or appreciate what we are experiencing. And the issue of "mostly women" being in this role, I also believe that is a generational/cultural issue. That will change in the future (hopefully). My parents were "old school" Eastern Europeans. My father beat my mother. My mother's father beat her. She raised her sons to be as arrogant and self-important as her husband and her father. She raised her daughter (me) to serve everyone in the family, and she even belittled and shamed that daughter if she didn't step up to the task or accept abuse with a smile. She raised me exactly the way she was raised. And no surprise, my brothers disappeared the moment their dear mother died (as she could no longer serve them, and the surviving family members were no use to them). I was left to care for my father alone (my father, who was also abusive to me). Hopefully this generational, ingrained and silent misogyny or sexism will change for the better. But who knows!

I found it exponentially harder to care for my lifelong mentally ill mother with dementia , compared to my mentally stable father without dementia who had cancer and CHF .

I hope that the stigma of mental illness fades and more people are willing to be treated for such . My mother always refused any meds for her mood and behaviors which only got worse with dementia .

I also have been very open with my own children about what my caregiving experiences were and that I am preparing as best I can to spare them the same .

I believe the pendulum has swung too far and caregivers need to push back for our rights . The problem is the cost of care , trapping families into caregiving.

I'm wondering if much of the issue is people not accepting death, if this is a US thing or not??

The societal expectations with me and other girls in our generation started in eighth grade. In eighth and ninth grades, we were required to take and pass home ec. State law, they told us. The boys were allowed to take science or woodworking, if the school was equipped for that. Many schools didn't offer woodworking, so it was often two extra years of science that boys had, which helped them on yearly placement exams as well as the placement exam that we had to take before high school graduation.

In home ec, we had units on home nursing and first aid. We learned bed baths, binding wounds, all the things a home caregiver needs to know to take care of a sick family member. I have been grateful for those lessons because I've recalled and used that knowledge as a caregiver for four family members.

But guess what - home nursing and home ec weren't on the state placement exam. The boys with their science classes placed higher in percentiles. They are (mostly) the ones who were admitted to college where science was a big deal. Their higher placement scores produced scholarships. I'm not saying that girls didn't qualify to major in science careers. Many did. But it was harder for them. Harder to be accepted into med school, dentistry, engineering.

But easier to become a caregiver! We knew how to roll old pantyhose into donuts to ease pressure on the elbows and prevent bedsores. We could do first aid for a compound fracture. So who gets to take care of demented Grampy when he slips and breaks his ulna? The ones with the ovaries! Women!

These days, I doubt that home ec, first aid, and caregiving are in curriculums. Many caregivers are coming into the fold with no preparation for the job that is thrust upon them. They're computer engineers, doctors, lab techs.

Where are the caregivers coming from now? Where will they come from in the future? Maybe it would be better to give every elder a magic pill when they reach their expiration date. But who would decide when that is?

Perhaps this should be decided by the same people who determined that I not be allowed to take science classes but home ec instead. They were allowed to diminish my chances of entering a science profession by sacrificing me on the altar of caregiving when I was only 13. So why not give them the power to declare that an elder reaching age 90, let's say, is no longer useful to society and buh-bye?

Noooo. NO! We don't want to do that. We want them to live as long as possible! Anybody in favor of girls taking home ec and learning to roll nylon donuts these days? To the detriment of their careers as physicists and engineers? Ha!

The only way to get to people is though education, the issue with that is , no one knows or understand what us caregivers go through daily, then we are hit with a big dose of education, when reality hits!!

When you live in a small town, like myself, I didn't know there was any other way, I felt like a prisoner with no choices. I feel the only way is to keep reaching out to people, when the caregiving subject arises. Recently an old gf of mine said something to me about, who is going to take care of me when I'm unable to take care of myself, since you have no Girls. I told her, girls or not , I didn't have children, to ruin there life taking care of my old a&&, I love my children to much for that!! The look of utter terror in her face , was actually priceless, and she said well , her daughter is going to take care of her. I also go on reddit a lot to show people there is another life out there, this is not the way it has to be. You do not have to feel like your parents slave , the rest of your life!!

So I'm very vocal about this to others.

There are so many aspects of caregiving that no one really talks about. All I ever see is "It all fell on me because my siblings wanted no part of it." There are many reasons why one person often does it all. It can be due to geographic distance or it can be due to dominant personalities etc. In the 25 years that my parent/parents have needed help of one kind or another I've run through all my emotions so many times that I know when my mom passes the only emotion I will have left is peace. It's been a very long road and I said goodbye to the mom I knew growing up many years ago.

@KNance

There is a saying that dementia does not befall only the person directly suffering from it but the whole family system around him/her. And from my personal experience with a demented mother I absolutely agree. After she died I was "only" caring for my physically frail but mentally healthy father which comparatively was like a walk in the park.

Love
Unkraut

@AlvaDeer
Yes, I thought as well this might be rather a topic for the discussion section. So I am not at all against my question being transferred there.

As you mentioned the problem of care is clearly connected to the demographical shift. But both are mainly deriving from women rejecting to accept non-paid care work while being financially dependent of their husband's good-will anymore (starting from hormonal contraception in the 60s - a reason why already the late boomers reproduced less).

The other reason is the pharma industry having contributed to elderly folks to live longer and longer. While caring for an elderly relative in the 1950's lasted in average 6-10 months until their death nowadays the span of caring for old parents lasts rather 6-10 years.

So many of today's women experience a stretch of unpaid care work over 20-30 years, starting with childcare in their 30s and blending into care for the elderly in their late 40s to 50s without any break.

In my years on Earth I never heard much about Alzheimers or Dementia . Were people embarrassed or felt to be Judged ? There is a large percentage of us woman caregiving after the age of 50 for our Parents , siblings or other relatives . The rest of the Family abandon the one caregiver . People dont Understand what a devastating illness this is and I think as a society we are still comprehending the aftermath . Not Only does the person with Dementia suffers but the caregiver as well .

I wonder if the admins might move this to Discussions?

For myself I did not take on direct 24/7 caregiving. As an RN I learned early on I was not mentally, physically, emotionally able to do 24/7 care for anyone. My family had no expectations of such a sacrifice and would not have allowed it, nor would I allow my child to do that.

I would say that there is, however, no way to avoid the pain and loss that family stands witness to when their parents, spouses, siblings become ill and aged. There are many times in life when we have difficult issues to face, and this is certainly one of the most difficult of all.

I would say the one thing that we do learn here on AC is that it take a lifetime of good luck, good timing, good savings habits, determination and good jobs to come to a place where one is "self insured" and able to afford decent care. To pay for the care of a relative is to make one's self not only UNSAFE in age, but dependent on family who may or may not be able to afford contributing to care.

There are many issues afoot here. Part of it is medical community and a failure to address with elders exactly what prolonging life at any cost and risk amounts to. Elders often fail to appoint family qualified to act as POA, avoid making wills (which should be done when young) and advance directives, and fail to speak with doctors about catastrophic illnesses.

The government currently spends much much much more money on Medicare, Medi-cal and Defense than on anything else. How long it can sustain the costs when the younger generation isn't having as many children as past generations, is a question for the future; I will be long dead. All of my grandchildren range from 20 to 34. There are four in my combined family with my partner. Not only do they not one have children nor have married, but they have no intention of doing either.