What are the lessons that we caregivers learn from those whose lives are so prolonged? - AgingCare.com

What are the lessons that we caregivers learn from those whose lives are so prolonged?

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I see so many people in the NH where mom is and I question the quality of their lives. I know I have no right to do this; it is not my place and there is a Higher Power that has a plan for all of us. But what about days when things seem so hopeless, optimism seems a dim memory; the elderly seem deeply lost in a world we can't enter. I force myself to visit mom every single time because the sadness just engulfs me sometimes. Often I cry after I've left, walking toward my car. I feel selfish and guilty and helpless and so very sad. Does anyone else experience this? Sometimes all the tricks and pep talks I give myself just fall flat.

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Where else are people to go when their families can't care for them or when families can no longer care for them at home? Or if they don't have any family at all? We have to have places for our elderly loved ones to go. Having said that, it's very sad and I get angry (?) that these elderly people are on medication that will keep their bodies alive long after their minds are gone or medications that will keep their hearts and lungs working long after they've had several strokes, a pacemaker, dialysis, an MI and Lord only know what else.

My dad was in a nursing home and had quality of life up until 6 months before he died. He had liver failure and his body would swell with toxic fluid that the liver couldn't filter so every 2 weeks I would take him to the hospital and he would have that fluid drained. My dad had hepatic encephalopathy which affected his mind and was beginning to show errors in judgement. These procedures to drain off his fluid were so hard on him. It was a day long process for us both filled with incontinence and pain and stress....And the more fluid they drained off of him the more fluid they had to drain off so at one point, as his medical representative, I said, "enough". I spoke to my brother about it and we both agreed that these horrible treatments which were prolonging my dad's life had to stop. I had to make that decision on my dad's behalf because the liver failure had caused brain injury. I didn't want my dad's life prolonged in that state. His quality of life had disappeared when I wasn't looking and the only things these procedures did was prolong his life slightly but he filled up with fluid faster than they could drain it and it was out of control. And it became a question of just because the technology was available does that mean my dad should keep having these procedures done? And my answer was no. He died soon after.

My parents had very definite ideas on how they wanted the end of their lives to be and not in any of those plans that they discussed with me and my brother did they say that they wanted to be out of their minds, that they wanted to refuse medical treatment, that they wanted to fall over almost everyday because their legs no longer held them up, that they wanted pain and depression and to be put into a nursing home because they were in too bad of shape to be cared for at home. No. My parents wishes were to die with dignity and I think that only happens occasionally. Everyone hopes to die in their sleep at the age of 78 after having a fulfilling retirement with travel and grandchildren. Life just isn't like that for most people. The people who die like that are d*mn lucky. I've seen more people whose bodies were worn out to the point that they were only a husk and whose minds were totally gone than I've seen twinkly-eyed, active, busy, loving and vital grandmas dying in her sleep content and at peace.

I've already told my family that if I am diagnosed with dementia I will take 1 year to get my affairs in order (such as they are) and be with my family and at the end of that year I am going out on my terms. I've been a caregiver to 2 parents who have died and as a nurse I have seen too many elderly people who are, through no fault of their own, a burden on their family and who cause nothing but stress and anxiety for years for the people who care for them. I won't do that to my family and I won't leave it up to fate like my parents did. My parents found that talking about death was unpleasant and would change the subject when I would try to pin them down on what they wanted. As a result it all landed on my shoulders and I was not the least bit prepared.

kthln, when my dad was in a nursing home and I'd leave I felt selfish and guilty and helpless and sad too. It was horrible. My heart physically ached everyday, a pain in my chest where my heart is. No one tells us that when our parents end up in a nursing home the caregiving doesn't stop. It gets different but it doesn't stop because we are obligated to visit. And each visit was a fresh heartache, at least it was for me. I didn't want my dad to be one of those people whose family never visited but now I understand why some families don't visit (even if I don't agree with it). It's unpleasant. It's depressing. Some people proclaim that they won't go to a funeral because they hate funerals. Everyone hates funerals! And people say that visiting a loved one in a nursing home is too much for them, they can't take it. No one can take it! And maybe it's not just our loved ones but the other patients. The ones lined up against the hallway because they need supervision. The ones who can't feed themselves. The one who holds a babydoll in her lap all day.....No one wants to end up like that but as caregivers we know how easy it is to end up like that.

You visit your dad as much as you can and don't beat yourself up about anything. When my dad lived alone I didn't visit him 3-4 times a week for 2-3 hours at a time. You can only do so much until it begins to affect your physical and emotional wellbeing. And my saying "don't feel guilty" probably won't help but don't feel guilty.
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I agree with what you've written: keeping a human being alive just because we can seems the ultimate travesty. I for one do not want this. And yes, I agree: our society is definitely headed towards warehousing our elderly. I desperately wanted to keep mom at home but her immobility and the fact that her mind was completely gone simply prevented it. Our society makes it easier to just shove them into a NH where they can be forgotten. Some of the residents where my mom lives have not had a visitor in the almost-3 years that mom has been there. This is unbelievably heartbreaking, that a human life can be forgotten!
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For me, it's reinforced my belief in the way I personally want to die.

It's shown me, in no uncertain terms, what "quality over quantity" really means in one's life. It's helped me to understand what horror-show deaths a loved one sometimes suffers at the hands of family...giving me a new and frightening definition of 'selfish.'

It's caused me to question whether or or not our constant fight for longevity is worth the struggle. To ask the question, "Just because we can?? Does that mean we should??"

And finally. To wonder what is to become of a society that chooses to warehouse our seniors and strive to keep them alive at all costs for the sake of profit.
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