Does anyone else regret the time they saved their loved one from death's door? I

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My mother has been in a very slow steady decline since 2007, the year my father expired. Two years ago, my mother woke-up in the middle night having trouble breathing. I called 911 and had her rushed to the ER. At that time, the staff told me my mother was in septic shock (from a bacterial infection in her bloodstream) and was in kidney failure, heart failure, etc. Her numbers were wildly all off the chart with no steady direction. The staff said the only option to save her life was to hospitalize her for immediate kidney dialysis, big tubes will be inserted in her neck to flood her with antibiotics, etc. I told them no, she' going on hospice. She was already having health challenges before this so to put her through this torture didn't sit well with me. While on hospice I told the staff that Mom can only have an antibiotic and if her body is to recover, to heal then, it will on its own. Miraculously, she recovered - 100%. Everyone was shocked. I wasn't because she had a brutal upbringing so her body was built strong to begin with. Strokes (she already one in 2006 - and recovered from this too!) and brain aneurysms run on her immediate side of the family. Now I'm fret with worry that she'll suffer a series of very slow and painful set-backs (like repeated strokes) that her she'll be in such misery until the day she actually dies. While on hospice I had the opportunity to not have them do anything and just have her pass away right then and there. But I wasn't ready to let her go because she's my only living family member left. She's my Mom, you know?? And to suddenly be put in that position to just let her die...?? You know what I mean? I just wasn't ready. And now I'm so afraid my selfishness will cause her a road of immense physical pain until she actually passes away. My father suffered HORRIFICALLY from the complications of this and that medical treatment and I promised myself I wouldn't let the same thing happen to my mother which is why I'm her full-time caregiver. I don't want my mother to be in pain when she's on her deathbed so whenever something happens, I think of her quality of life, first. I think a family member's last memory of being in pain is just so awful. Yet, I'm also wanting Mom to pass away now so I can have a chance to have a life. I'd like to meet a man who cares for me as much as my father cared for my mother. And I'd like him to have children because I never had the chance to have my own children - Mom is my child! And I'd like to have a career (which I did...eons ago) because I don't want the only thing on my tombstone to be "She was such a good daughter...She took such great care of her parents..." I'm capable of so much more. Before Mom was on a hospice, she was a DNR but it was a general DNR and while on hospice, I escalated the DNR to include no IV, no aggressive measures to restart her heart, etc. And this is her current DNR. Her doctor treats homebound seniors and stated in passing conversation that we're all going to die from something and was in total support of my decision to escalate the DNR. He commented he's seen a lot of his patients suffer because the family members weren't ready to let go. And to dig the knife in my heart even more, Mom is suffering more now than before the hospice incident. It's a slow suffering but nonetheless, she has no quality of life. I promised myself to cut back on the wine - Not now! I'm having a glass to take the edge off. And I drink the wine, I have a lot of thoughts and I wonder what my life would've been like if I decide to let Mom die while on hospice. And then I cry because I'm torn with her being my only family member, now knowing she's suffering even more, and freedom I would've had if I let her pass away.


careisgiving, it doesn't sound like you took any extraordinary measures to keep her alive. You just had her treated for septic shock with a simple antibiotic. Her body did the rest. I don't know if you could have morally done anything less than what you did in providing something to combat the distress she was feeling from the septic shock. IMO, you did nothing wrong.

I do understand the ambivalence of your feeling about her living longer. They can suffer so much and so long, and we are suffering with them, with our lives on hold often for many years. I'm well beyond the child-bearing years, but I also feel the need to get back to my own life. The longer I am here, the more I see the house by the stream in my dreams fading away. It's starting to feel like I'll be ready for a NH myself by the time my mother passes to her next life. I know it is possible to build our new lives from where we are. I just haven't been able to figure out how to do it.

It would be wonderful if one of the hospice staff was the man of your dreams. Then it would all flow together. (Sorry, being silly. I am a hopeless romantic.)
Caregiving word does NOT mean we have to save them every time. If you arent there to take them in to the er time n time again who would? Who would go in with them everytime besides you and piss away more sleep waiting on test results and sitting in the most tortuous chairs for hours only to hear nothings wrong or heres the discharge paper Be sure to follow up w pc doc in the morning. All the entire time your body aches with so much pain your own death looks to be the start of a prayer. On top of the shitty attitude your given by er staff because they think you dont know shit n your patient doesnt belong there, even though everyone including the patient wants to be there, you are treated like a dumb ass and all you say is dismissed. Plus, the chairs they have for patients family to sit in are sh*t.
I know what you are saying, I think a lot of us feel the same way. My mom hasn't overcome any crisis, but the miracle of modern medicine and her body's own resilience have kept her in this seemingly endless state of dying for years now. When her doctor removed most of the meds she was on I was terrified she would have a stroke, now I sometimes hope for one, a massive one, that will end her suffering.
Oh you are not alone. I saved my mother's life twice, once from non-Hodgkins lymphoma and then from a heart attack/pneumonia when she was in rehab. That was six years ago. Her last six years were full of pain and depression, dementia, and losing her hearing and then eye sight. If I could turn the clock back, I would not have encouraged her to take the cancer treatment which put it into remission. The endless doctor appointments, the ER visits that Jillybean65 described to a T, and listening to my mother expressing her desire to die over and over.

Caries giving, I finally listened to one of her doctors who gave me permission to place her in Assisted Living four years ago. I listened and save my sanity. I could not stop working, because I was working for my retirement. I retired in December, and mother passed in June. I have no regrets, because at the end, that person was not my real mother at 97. There were only brief moments of her that would slip through her confusion. I did the best I could, and I am now getting on with my life.
Just a hug. You made the best decision you could at that time, and there isn't anything better that anybody can do. But I understand all about second-guessing yourself (and third-, fourth-, fifth- to infinity) and I'm sorry you're going through it - it's torment. Hugs again.
Thank you to everyone who's responded so far. I just liked you all, individually. I'm not by the book religious, I'm more of a spiritual person; do go and good things will happen. I'm not a Mary Poppin's type of person - but I try to stay positive when faced with a wall of hellish responsibility. And I've always been a believer in "The Universe". Some say "God". I say "The Universe". "Tomato, tomata...It's all the same..." :-) I think my mother's septic shock was also a wake-up call to me, The Universe telling me that it's time to put into motion my dreams and goals of carving a life for me - because as all you know, caregiving is 24/7 and in many ways we lose ourselves, our identity in the process - and then suddenly "Boom" you're loved one is deceased and the caregiver is left hanging with the aftermath and at a loss of what do with all that free time!! :-) My parents immigrated to this country from India and I'm an only child with no other blood relatives helping me care for Mom. My parents faced extreme adversity from a young age (hence, my comment about my mother's brutal upbringing and why she's built so strong) and my father would be so sad right now if knew that I haven't tried to do something for myself. So, I've been putting a plan in place to build a business and hopefully grow it to the point that I can pay for my graduate degree - I'm doing this for me, for my self-esteem. I think of myself as a single working mother and my child is 73 years old! And I completely agree with Jillybean65 - the medical community can be so f*cking arrogant - because they think that a caregiver who doesn't have a "medical degree" doesn't know shit. As caregivers - WE'RE SELF-TRAINED MEDICAL PROFESSIONALS! We've been baptized under fire - AGAIN AND AGAIN. We've earned our stars and stripes over and over in the battlefield. So to all medical professionals who like to spew medical jargon to intimidate us into hospitalizing our loved one so you can make a handsome profit at the end of the day - please do us caregivers the honor to shut the f*ck up and let us make the decision that's right for our loved one! We have a brain, too! And most importantly - we actually do care about our loved one and don't treat them as revolving checkbook. The ER staff told me my mother's death was "imminent" and that hospitalization was the only chance she had to survive - this was two years ago and Mom is still here with me!
I sometimes wonder about the day I went by and made heroic efforts to get my loved one to the door. If I had not.....I'm pretty sure she wouldn't have made it through the weekend due to heat, dehydration and other medical issues. I thought I did a great thing. Now, I wonder. I may have saved her, but for what? She's no longer herself. (dementia) She subsequently underwent so much pain from falls, fractures, incontinence, immobility, fear, confusion, mental distress, and has lost much of her identity. And the worst lies ahead. I'm not so sure now. I think it was the right thing to do. I have to have peace with that.
Care, how old are you? Doing graduate work? That ain't easy........
It's very hard to be objective when a parent is near death. My Mom would have died years ago without numerous ER trips and medical intervention. Her quality of life would be described as "Just Barely".

I would like to think I would help her end it the next time. We've talked about it and I think I could but who knows. Don't beat yourself up. You've got good spirit and you'll figure this all out in time.
Care, we made the best decision with the facts we had at the time. If I'd known then what I know now, it would have just made it more difficult than it already was.
Hugs and friendship.
careisgiving- I can relate to so much of what you are saying here! In particular the part about not being ready to let her go. We put my mom on hospice in mid July after a hospitalization for high potassium levels( which were resolved) but it led to her aspirating and getting pneumonia. Her swallowing was tested and the speech therapists said that she was a risk for aspirating even with pureed foods and thickened liquids. Given she had had a few cases of pneumonia already in the past year she was eligible for hospice. Mom had dementia and had declined quite a bit over the past year though she still knew me. I knew it was time for hospice- every time she had a hospitalization in the past for one thing, she'd end up catching other infections or having other complications. And the stress of going to the hospital was intense. So I was glad to know that hospice meant no more hospital trips...yet I still wasn't quite ready to let mom go. Mom's health was precarious- she managed to recover from the pneumonia through 3 IV antibiotics, but had had no food by mouth for a week when discharged. We got her back to the nursing home and she seemed to crash a bit and sleep all the time. I called my brother who lives in LA and suggested he probably should come out given the hospice status and that we didn't know if she was going to pull through or not. I prayed so hard that she would wake up enough to be with him and at the least they could say good bye. The first two days he was here she didn't respond much, but by the third day she woke up and spoke to him and started getting better and eating more. In fact she rallied......however a few weeks into this I could see that her quality of life was really not what it had been. She could not longer bear wait and even though she was tiny and about 110 pounds required a hoyer lift to get out of bed...was incontinent, eating only pureed food and her speech was very garbled and sleeping alot. At some point I came to terms with this and was willing for her to go. The long and short of it was that she passed away a few weeks ago.

So I know you have this fear that she may live a long time in her current state... the fact is, you don't know for sure. My mother like yours, had always had this extraordinarilly resilient quality- she's been through many hospitalizations and always would rebound and people would be astounded. I really feel that my coming to terms with and being willing to let her go...was felt by her. We were very very close and I think she honestly stuck around because we loved each other so much and I was so attached! I had also moved her to a nursing home closer to me about 3 years ago( she had been 7 hours away before.) In fact one night towards the end I told her it was ok for her to go to heaven if she wanted to and I would be okay. Somehow I think saying that and my letting go of her earlier...might have had something to do with this.

Please don't beat yourself up for having your mom be treated with antibiotics. That's exactly what I did. I said no to a feeding tube but continued with IV antibiotics first before going on hospice. At times I thought, oh no what if she keeps going on and on in this state....but she actually didn't. So though you worry about it, you just don't know. My mom had nine lives like a cat- kept rallying over and over, but eventually that changed as it will with your mom too. Look into your heart and see if you are willing for her to go. It's okay either way, but somehow I have this deep sense that by me finally accepting things it made it easier for mom to go... many blessings to you...

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