We feel every ache and pain, see to every infection, bout of pneumonia, nutrition needs, bathrooming needs, etc., with people who can, sometimes, only be described as extremely difficult to get along with. Every daily need is seen to in an effort to prolong lives that would have already been over without us. So we stretch out the years for them...years spent doing nothing, sometimes in some trance-like state.

I think this may be far too existential a forum for such a question but what is the value of all of this?

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I feel your pain.  We don't caretake because we are appreciated. There are a myriad of reasons why we are there. We do it because we made a commitment, because we feel guilty, because we would want it done for us, because it's the right thing to do, because of our proximity, i.e. we're the last living family member in town, or because of our culture. It's complicated. In an alcohol or drug addiction situation, this would be considered co-dependency, and we would be considered to be, or accused of being co-dependent (dependent on the needs of another, or manipulated by the needs of another with a pathological or mental illness.)  But in the case of our elders or spouses, it is considered an obligation or commitment, yet the caretaking results are the same as codependency; physical, mental and emotional exhaustion and depletion.  We might not be judged harshly for leaving an addict or alcoholic, but then might very well be judged harshly for admitting a loved one to a nursing home. It's very complicated. I have cared for elderly that are controlling and difficult to get along with, and others who were a pleasure to care for.  If they are historically difficult to live with, then caretaking is extremely complicated emotionally.  Their needs are being met, and our needs are falling by the wayside one at a time, until we don't even know who we are anymore.  Their lives are extended, often with little quality, and ours are very likely shortened, or what quality we had saved and hoped for is slowly being depleted. I have had cancer, and horrible treatments, but have been extremely healthy for 12 years now, and was very healthy before cancer, always ate properly and exercised, only to find myself caring for a demented husband with cancer, heart disease, hernias, replaced hip and knee, who never ate or exercised properly, smoked and drank. 

I have issues with a worldwide medical community that has given and continues to give so much time, money and research efforts to healing heart disease, cancer and other illnesses that we now have a growing population of people who are surviving multiple chronic illnesses only to be left with dementia for a decade or even two not even knowing who they are or who their family is.  I doubt anyone in their right mind would consider this to be "quality of life" or would choose to live out their last years this way. If I were diagnosed with dementia, I would not engage in treatment or would stop all treatments for other chronic illnesses.  The government funnels funds into research, maybe they can funnel more funds into helping healthy people survive caretaking!
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Reply to TerriLou
ExhaustedOne Aug 23, 2018
This was one of the most well thought out responses. It really struck a chord with me. Thank you.
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I like how TerriLou said it. I agree that modern Medicine has kept us alive too long. Yes, the heart is still good but the brain is dying and the body giving out.

None of us want a parent to die but watching my Mom lose her mind and get frailer and frailer was awful. Yes, I think her decline was maybe faster once she was in an AL then a NH. But, I knew having her here longer was not going to bring back my Mom. She was well cared for and passed peacefully.
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Reply to JoAnn29
Ahmijoy Aug 23, 2018
I agree. I felt the same way about my mom. She always had such a high opinion of herself and to witness her falling into the dementia pit was beyond heartbreaking.
I tell people my simpilistic philosophy about "the path of least regret " which i may repeat from time to time ...

we have choices ... both difficult/both "bad" ... so we need to look down the road and try to pick the one we hopefully will regret least in the future.

Sometimes we need to be caring and understanding and helpful and tho it may extend a life that doesnt seem like a good one at least we know we have made it better for another person.

So we do the best we can and come here where people understand and are supportive.
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Reply to Betsysue2002
Fitzgerald Aug 26, 2018
Betsysue, your phrase is brilliant. I will be quoting you. Often ❤️
We do it for ourselves as much as for them, because part of what gives life meaning is helping others.
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Reply to cwillie

I often wonder the point myself exhausted. My husband and I both have decided that if we have no quality please do not make us have quantity. To be a burden on anyone because we fear dying is not in our cards. We know where we are going and are looking forward to getting there.

I believe that there are individuals that the lights are on but nobody is home and to prolong their lives takes resources that could be put to better use. Just my opinion.
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Reply to Isthisrealyreal

Bottom me, we are living too long. And medicine just keeps on extending life past beyond what is normal. This has been eye opening for me. I feel so sorry for my dad have to just wait out his days hating how his life turned out. Read the book Being Mortal. Very insightful
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Reply to Harpcat
scotchtape2112 Aug 26, 2018
Throughout all these replies, I have been thinking of “Being Mortal”. The message there is that we need to have THE talk with our families. If it is decided by individuals, while they are still able to decide, what measures they want to be taken to extend their lives, then caregivers are relieved of that decision. I have had the talk with my children. I would rather leave sooner than later!
I am not dragging them through what I have been and still am going through as a perpetual caregiver since 2003. In the meantime, without having that talk about mortality and what our relatives’ individual decisions are, our hands are tied. And as it has been pointed out, at the very least you won’t be guilt ridden after they have passed. You know, hospice discontinued my parents’ medications except for antibiotics and pain meds. The body is valiant in its struggle to survive.
As Mom creeped toward “crossing the line,” she and I did a dance of denial. For years.

Mom denied that she was the needy, deteriorating mess that she really was. And I chose to believe Mom’s sh*t, even though I always had a knot in my stomach about “why is she so damm weird?”

After every phone conversation.... after every visit...... I’d shake my head and ruminate about Mom’s odd priorities.

In hindsight, I misread years of Mom’s diminishing executive function.

For as long as I could remember, Mom HAD to do things her crackpot way — and went ballistic (or shut down) when anyone challenged her alternate universe. This was Mom in her 20s, 30s, 40s and 50s.

This trait of Mom’s really escalated in her 60s and beyond. I thought she was just being stubborn and selfish and intractable. Ya know, all the “pat” things people say about old folks.

When Mom lost her smokescreen (her husband died), she was in a pickle. She had enough $ to pay for home help or put herself in a supportive residential environment. But Mom had her stubborn, made-sense-to-her reasons why she would not touch that nest egg.

And OF COURSE Mom was legally competent. (Are we all cringing yet?)

I am Mom’s only biological child. Mom’s only other relative was her 70-something sister. My aunt lives near Mom and had plenty of free time to help. But seven decades of personality clashes loomed large. There was only so much time they could spend together.

Another big part of Mom’s “act” during her decade-long slide was freezing out her friends and adult stepkids. Mom wanted as few witnesses as possible. Wanted no one to ask her the hard questions.

Again, I just thought Mom was being a major-league azz. And yeah, it bugged the sh*t out of me. But I was at that age (middle age) when my peers were feeding me the classic “oh, our parents get so stubborn and goofy as they get older, don’t they?”

I found the whole syndrome rather disappointing. But I didn’t question it too much.

After the curtain dropped — and it was obvious that Mom needed real help — I fell into that maddening blend of hands-on and logistical caregiving.

I gave personally when it made the most sense and had the most impact. I delegated certain things to Aunt, whether either of those 2 old biddies liked it or not. I fielded phone calls from concerned and helpful neighbors.

A biggie: I perfected my script for the (many) people who came out of the woodwork to tell me — explicitly or implicitly — that as The Daughter, I “needed to” (in so many words) take out a 2nd mortgage to turn MY house (full of steps, hardwood floors, sharp corners and narrow bathrooms) into an ad-hoc nursing home. While Mom sat on 3 paid-off homes and a long-term care policy with generous coverage. SIGH. Hello, high blood pressure.

While (barely) keeping all the plates in the air with my career and my home life. Did I mention that??

I spent a lot of time trying to tell myself, “It’s not all about me.” Then I took a good, hard look at the cast of characters.

•Rickety, blank old Mom, sliding down a chute of 2 forms of dementia and a rare neurological disorder (all undiagnosed while Mom was alive; ain’t autopsies grand?)
•70-something Aunt who meant well, but does not possess one iota of common sense or self-awareness
•Fully-functioning me

Of the 3 of us, I was the only one who finished high school, let alone college. Only one who was computer-literate. Only one who could make a grocery list in less than 1 hour. Only one who could drive on a highway without being a danger to myself and others. Only one who could follow directions to someplace new — and successfully reverse the directions to find my way home.

Which brought on my epiphany: It really was all about me.

I did not have to do everything (and I didn’t). But I had to be the brain for 3 people. No way around it.

And that’s why I tried so hard.
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Reply to BlackHole

I don't see any value in it. When it became clear that nothing would "fix" what was wrong with my mom (CHF, repeated pleural effusions, stroke and vascular dementia) we got her palliative care at her NH.

My mother was not hard to get along with and appreciated all that we did for her.

If you are not appreciated, why are you there?
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Reply to BarbBrooklyn
poetry21 Aug 23, 2018
If you are not appreciated, why are you there?
I dont know the answer, I wish I know. I am not appreciated....and I am still there for her.
I couldn't agree more TerriLou.  
Medical science has made so many advances over the years but along with these advances now comes a whole new set of problems for seniors, the worst in my opinion, dementia.  Right now my family is experiencing 4 of our loved ones with this horrible disease.  My aunt (92) is not expected to live more than a few days now, my uncle (96) who we feel will shortly be following her, my father (94) and now my husband who is only 71 is also beginning this terrible journey with a vascular dementia diagnosis just recently.
Yes the 3 older family members have enjoyed a wonderful long life but I know had they been able to predict the end of life they are experiencing now they would rather have passed on years ago.
Many of us have been fortunate enough to secure our future financially but what good is that when our minds start to fail us?  What kind of living arrangements do we have to look forward to?  Our governments have not looked after our seniors in the past, present and I predict, the future.
I, for one, am very scared of what is to come.
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Reply to givingup1
Fuzzman Aug 26, 2018
My sister and I talk about this issue all the time. We are surrounded by people that financially are able to keep their loved ones alive but they don’t have the cognition to enjoy any aspects of life. Even going so far as to have expensive medical tests/treatments just because they CAN. I, like you, am scared.
I have been reading the questions/answers in this forum for a few months now and am so glad this existential topic was initiated. As a daughter with 5 siblings, my older sister and I talk about this issue often. So many people whose bodies are living but whose brains are not functioning. And not enough people (women or men) choosing to go into the nursing professions - a dire shortage of care staff even if you can afford it. Our mom passed away last year (dementia), our dad is in AL (vascular dementia, Afib, arthritis) and an aunt (81) who has no major health problems but has incontinence and dementia in Memory Care. And we thought it was hard watching our grandparents die from cancer......
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Reply to Fuzzman

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