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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.

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careisgiving you can never know. I guess thats the way God intended it. My Mom died in May at 92. For some reason I expected her to live to be 96. I don't know where I got that number from. But I was always prepared for when it would happen. I never ended a conversation with her without saying I love you.

The week before she died there was something in her voice. I don't know but I knew something was wrong. I think maybe she knew.

Best of luck to you careisgiving. Whatever happens I wish you the very best. And your mother.
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Thanks to all who've shared their stories with me. It's just hard when you think you're ready to let go and when the time comes, you decide, "Well, let's see if our loved one can recover on his/her own without major medical intervention..." and he/she does?! My mother's PCP stopped by today and said she could easily live another five to ten years in her current state. Immediately, I felt like someone had kicked me in the stomach. I've been working on a game plan to get my things going and I have to believe whenever these are in place and ready to go, then The Universe/God will take Mom away. I have to believe she's still here with me for a reason. You know what I mean?
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I sense if Our ailing Love one's Who are at the end stages of Their Life could only speak to Us when They are at crisis point, would probably say to Us
PLEASE LET ME GO..LET ME DRIFT OFF INTO THE NIGHT, WHERE I WILL SUFFER NO MORE.
Human nature being such a powerful thing, and Love for One's own..easier said than done. Some times it is much tougher for Us Caregiver's on the wings seeing those We Love suffer, than it is for the Sufferer. I applaud You CAREISGIVING, You did what any good decent Christian would have done. When the END comes You will know that You did Your very best.
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I think many of us can relate. I had my uncle intubated when he couldn't breath, he was a DNR but was begging for someone to do something and I couldn't let him go that way. He then contacted MRSA, they put him on antibiotics, he then said he just wanted to go home (to the nursing home) to die please. SO I stopped all antibiotics and he beat MRSA on his own. He lived another couple years after that, but not much quality to his life, I second guessed and cried over my decision many a time, but what was past was past. He passed a few months ago and OH how I miss him, but now I have my Mom, ( alzheimer's) in the same nursing home, and I wonder when it is my time to not have to take care of someone? This is a great site to vent and air your feelings, share your triumphs and your losses. Big Hugz to you!
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My dad regretted his decision to allow doctors to place a pacemaker in my grandma after about twenty minutes of CPR in the ER after she fell I'll at home. She was never really herself after that and was unable to return to her home. She spent the next several years miserably living in a nursing home.
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Boy how do I relate to all these comments! I had exactly the same scenario. Twice my mother was at deaths door. The first time I was living in Virginia and my father sent for me as my mother had suffered a suspected stroke. I arrived in the UK and found she had been rushed to hospital and was just lying in a side room. The doctors were doing nothing after many hours and then said " she can go home now" I was giving her ice compresses for her terrible headache.
I told them no way is she going home, she will die there! So they took her to a ward gave her a lumbar puncture and found she had bleeding on the brain. Then the system kicked in and she made a good recovery! She never had good health after that so I have mixed feelings. The next time she was reckoned to be at the end and I was allowed to sleep on the floor in her hospital room for a week while she was supposed to be dying but was saved by the dedicated emergency team. By this time she was 84 and just became more and more of an invalid after that with me caring for her. She lived to 90 but did not want to.
It was just a nightmare but I cant regret saving her as that is the natural thing to do. I still wish I could have alleviated her pain in the last year or so of her life. You cant go back - only do what you have to do at the time. It helps me to know that I am not alone in this dilemma. There was no alternative at the time. Guilt guilt guilt - but it was not our fault - just life kicking us and our loved ones .around. Thinking of you all trying to do the very best you can.
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I went through the same thing with my Mom. About two years ago I had real concerns about her. She was living alone at the time. I had keys to her place and stopped by constantly to check on her. This particular day I walked in to find her sitting on her couch in her underwear. She had wet herself and was talking to herself. I called 911 and after admitting her to emergency we found out she had sepsis, was in kidney failure, had suffered a heart attack etc. etc. What followed was a nightmare year. Six weeks in hospital, another six weeks in a rehab facility that released her back home against our wishes. Six weeks of home health visits that failed cause she would refuse entry to them and I would be called. So four times a day I would rush over when the home health people could not gain entry.

I used to think it was fortuitous that I arrived at my mom's door that day. She surely would of died that day and after a year in a nursing home where I know my Mom wished she were dead even though she put on a brave face for me, I wonder if I had not arrived at her door that day maybe she would of died and maybe that would of been for the best for her. I cherish the extra time I had with her but regret that she had to suffer and be depressed the last year of her life.

She died in May of this year and I miss her terribly but know that she is where she needs to be.
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I already told her doctor that if Mom were to show signs of cardiac and/or respiratory distress - I'm not calling 911 - I'm calling hospice. The escalated DNR is already in place. I love her so, so much and she truly is like my child - but she is suffering so more now that my stomach aches. I'm a firm believer in The Universe and I just have to believe that there are still lessons I need to learn - though I don't know what they are - and after I learned those lessons, then Mom will pass. Other than keeping me busy 24/7, I just have to believe there's a reason why she's still with me after surviving the septic shock. I'm having surgery in a few months for a female-related issue and I have to be under anesthesia. I've been delaying this surgery because, well, I've been waiting for Mom to pass away because with any surgery there's always risk of complications. This female issue is really affecting my quality of life so I've made the decision to move forward with it. It's only a 1.5hr procedure from start to stop, but I'm terrified I'll have complications - and then no one is available to care for Mom. After years of caring excellently for both parents, now I'm faced with this or that health issue. So, it's just not for her having no quality of life that I want her to pass - I'm having health issues and the stress of being an only child to now one parent is difficult. Ugh...I just have to believe it's just all going to workout somehow...
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I think you made the right decision to try and help your mother, you end up feeling better that way than not attempting anything. If your mother should get bad really you can always try hospice again, and no meds this time , but believe me there is guilt when you go that route too. Either way is so very hard.
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TSM1013, Very well written and I agree with this wholeheartedly. I love it when I meet a bright upbeat senior. Unfortunately, the ones in my sphere are miserable creatures dependent on polypharmacy for their poor quality ongoing unhappy existance. The Anasazi people only had a life expectancy of 38, and until the last century most of our grandparents passed in the late 60's. Now we implant machines in their hearts, thin their blood and artificially keep them going with multiple drugs until they are 100+. I am starting to think IF I make it to 80, I will stop taking any drug and let nature run its course.
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Thank you all to the next set of comments. I've liked you all, individually.

In response to Windy - I'm now 44 years old. I was 33 when both of my parents needed my care full-time. At that time, I was living in Chicago, working for Deloitte & Touche in their technology group, well on my way to management status - and then I received a phone call from my father that he diagnosed with stage four cancer - cancer that misdiagnosed for two years by several different medical professionals. I dropped everything and moved back home within one week of that phone call. What I didn't mention about my mother is that she was born with a health challenge, and culturally in her generation from India, women didn't work. So she was a dependent on him since their marriage. My father raised me the complete opposite - he was a strong promoter of women's rights and encouraged me to have a career while raising a family. So, at an early age, relatively speaking to the traditional age of caregiving, I was a full-time caregiver to both parents who each had their separate health challenges - with no help because I'm an only child. And in response to TSM, the reason why I'm so harsh against allopathic medicine is that I learned through the painful experience of my father - the realities and motives of traditional healthcare. And it's because my horrific experience with traditional healthcare, I'm very interested in becoming a naturopathic physician. In AZ (where we live), naturopaths are licensed as primary care physicians. A true naturopath is one who has graduated from one of only a handful of accredited naturopathic medical schools and is board-certified. There are many "online" type of programs that claim to be "holistic" and it's these unaccredited programs that perform wacky, non-clinical based treatments that give true naturopaths a bad name. Ever hear of Dr. Oz? Ever hear of Dr. Andrew Weil? These allopathic-based doctors are jumping on the bandwagon of natural medicine promotion - because they know it works - but they like to double-dip into traditional healthcare so they can profit from both fields. What both doctors preach - is no different than what a patient would receive from an in-person visit with a naturopathic physician. But, what those doctors are doing, say "Take 600mg of EPA/DHA for this...Use natural progesterone at 50 mcg for that...Drink four to six cups of green tea for this..." etc, I don't agree with this general advice because medical treatment should be individual; 600 mg of EPA/DHA may not be enough for someone who has a family history of cardiovascular disease. This is why the general public who are looking for naturopathic treatment - should consult with an in-person naturopath. Naturopaths main focus - and only focus - is quality of life. Allopathic doctors are NOT trained this way - but may turn the tide after years of practice and seeing the damage that all these pharma drugs are doing to their patients. I vicariously lived through my father's suffering from this and from that medical treatment. After he expired - I was a mess - A BIG MESS - for a long time. He was my hero. He was the rock in the family. It's been a long time and it's only been in the last year that I've been able to get on with my life and think about what I want to do with my life. My mother has NO QUALITY of life. Every night as I fall asleep, I pray to "The Universe" that Mom will just pass away in her sleep - because the thought of her suffering from repeated strokes or develop cancer or anything else that will cause her such physical pain - more pain than she's in now - is worrisome to me. I know I have no control but it's just so very hard for me to see her have no life and is just waiting to die. Ugh...so rough...
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Since I have been my mom's primary caregiver for almost 4 years, I have changed my feelings about longevity. We as a society are so proud of technological advances that keep people alive so much longer but if they are alive without QUALITY of life, whats the point? It merely causes emotional and financial stress on the families and the person is alive but now old, sick, senile and unhappy. Whats the point?? If we can keep people alive who still have quality of life, that's great...otherwise, I am all for QUALITY over QUANTITY. So, you are not selfish..you are living the reality of drawing out a life whose quality is questionable.
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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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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.
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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.
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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.
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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!
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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.
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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.
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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.
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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.
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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.)
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