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.
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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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.
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.
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.
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...
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...
Hugs and friendship.
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.
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.
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.)