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ExhaustedOne- I hear much pain in the question you asked. So many people here have offered their sincere and honest answers. My Father thrives only because of the care he receives from my husband and me. Without us, he would surely give up. Other family members could help more if they wanted to but they don't. My question is how can people not help? How do they turn away and pretend it doesn't exist? What's wrong with them not us! For me, I honestly could not put my head down on my pillow every night if I didn't help my Father. The same goes for my husband. Why do we suffer for our loved ones? I believe those of us who do this day in and day out know the why. We have to only look into our heart, and we will find the answer. It's an overwhelming and intense feeling to do what is right. Our empathy and caring for someone who needs us and our strength is a powerful force. Even when someone is undeserving we offer our help.
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I sort of went through this with my brother who was our dad's chief caretaker and he kept insisting that hospice bring in iv fluids so Dad would perk up - and I remember saying - perk up for what ? so he can have another week of no eating, no drinking, continuous sleeping (except at night) - and truly no real quality of
life -
Yes i also wanted my dad back to where he had been - but that just wasn't going
to happen and this was the new normal in our lives. It only lasts for so long - and we grieve the person they were. There will come a time - I do know what you are feeling.
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I am blessed (per others, though I sometimes question it, in moments of deep frustration!) with two elder parents...mom almost 96 with dementia, and dad who everyone thinks is SO cute at 101, a role model for us all, active engaged, energetic...driving, golfing, mowing, volunteering, gardening....and making me exhausted. In the past week while I was recuperating from some significant oral surgery and admitted I did not feel good, we still went to pick out a new fridge HE wanted, and opted for stainless (i.e. FINGERPRINT SHOWING) steel and due to the deafness, the low limit credit card he wanted to us, I probably spent 4 hours on it all. The next night it was a crisis rash...hives. The evening spent running braless to the urgent care to get there before they closed at 9 (he told me it was spreading at 8:40 PM) after hearing their commercial while on hold earlier trying to get an appt for the next day for over a half hour. We arrived at 8:53 to find the door locked and a patient inside who kindly opened the door and then Nurse Retched was furious and said they couldn't take any more patients for the evening, which resulted in a run to an ER. Why? Because we care, we're good kids, and it is the right thing to do. Who are we to judge and make these decisions that life is over? Maybe if things are as bad as you say for your loved one than you pull back a bit and start focusing a bit more on you, a bit less on them.
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BarbBrooklyn Aug 2018
Have you ever said "no, Dad I can't possibly do that right now"?

When, three days running, my Mom, who lived an hour from where I lived and worked, had an "emergency" that demanded my immediate presence, I sat her down and said "I can't do this anymore".

Can't do what? she wanted to know.

"Respond to your emergencies. Which are not really emergencies. I'm going to lose my job and your son (favorite child) is going to die of a heart attack responding to this stuff; we need to figure out how you're going to live somewhere so that you have people around who can respond to these things".

She was terribly upset, but we stuck to our guns and got her moved, first to AL then to a nice Independent Living place. Mom thrived there, although she was not a social person.

It also helped that she started being seen by a geriatric psychiatrist who got her anxiety under control.
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We don't do it for "appreciation." We do it out of KINDNESS and simply stated, it's the right thing to do. I am not referring to prolonging long.
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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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Fitzgerald Aug 2018
Betsysue, your phrase is brilliant. I will be quoting you. Often ❤️
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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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I do not think there is a person doing this who has not asked this question. I think you are brave to ask. I take care of a pretty nasty narcissist because EVERY Time I see her happy, have one healthy moment - I know I am not her. That is why I do it.
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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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Fuzzman Aug 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.
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My mom, God love Her, but she was just Irish Tough, and the ONLY medication she EVER received until she entered Hospice Care, was an antibiotic for an upper respiratory infection, perhaps 3 or4 times during her last 3 or so years, and Xanax to relieve her anxiety, which seemed hard wired in her and continued even after she’d lost the ability to communicate verbally.
So I, as her sole POA, didn’t “try so hard”, and we (her tenacious family) were all Blessed by a residential care center that DID appreciate US, just by the luck of the draw.
We chose her residence because we’d originally been forced to admit her there on a moment’s notice (thrown out of her hospital bed after she was “cured” a week after hip surgery), and found to our amazement that the rehab staff was able to get her to DO stuff. Then after living with me for 9 unsuccessful months, when she again had to be placed on literally a day’s notice, they had a bed for her and we took it.
I think I actually never expected, or looked, for “appreciation”. My mother was a tough cookie with a heart of gold, wracked by anxiety her whole life, and I was used to that when she was well, and continued to admire and cherish her foibles when she became dependent on me.
Although I too thought I’d die of exhaustion while we were living through the end of her life, I treasure the little joys that were hers through her family AND her care team.
She died at 95, and we still have contact with some of the staff members who were so good to her.
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Bottom line...to 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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scotchtape2112 Aug 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.
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I think it is just what we do. We keep people alive and care for them as long as they will live. Sometimes you begin to question why and wonder if they want to live or or are they just existing. Sometimes it's hard to know.
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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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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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Ahmijoy Aug 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.
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We do it for ourselves as much as for them, because part of what gives life meaning is helping others.
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Too existential a question for this
forum?

Perhaps. I expect there are almost as many answers to the questions of why and to the inherent value of being a caregiver- as there are people who come here.
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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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ExhaustedOne Aug 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 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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poetry21 Aug 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.
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