Replies to This Discussion

Permalink Reply by Kelly Mc Clinton on April 30, 2010 at 12:40am

I lost my mother on February 9, 2006. She had gone into the hospital on the 7th of February with pneumonia and everything was going fine. My husband and I had planned on going to see her on the 9th after I got home from school, but we never made it. I was on the computer surfing the web when my one sister called, crying and hysterical. She was screaming at me asking me to tell her that it was not true, I asked her what she was talking about and that is when she told me. I told her that I had no idea what she was talking about but I would get a hold of our oldest brother to find out what was going on. At first I jus got the answering machine, so I left a message asking that he call me and tell me what was going on, he did and that was when my world ended. My mother was my best friend, someone I could talk to when I was having problems. It has been more hard for me to get over it because I look exactly like my mother, I can not even stand to look in the mirror because I am just reminded of her. I hope someone can help me get over the grief.

Permalink Reply by Yvonne on April 30, 2010 at 6:41am

Dear wd,
I feel your sorrow and can only imagine how you might have felt in response to your father's actions. Unfortunately people react to the death of a loved one in different ways and we can't always anticipate what that might be. We like to believe we know how we would react or that we know how our family members would react but we are sometimes caught off guard by what actually takes place. Its very possible that your father's actions immediately after your mom's passing took place in an intense cloud of mourning himself. He had just lost his partner of many years and had to be somewhat overwhelmed by the emotion himself...even tho' he will probably never admit that. (Men being the way they are and most of our fathers coming from a generation where they did not reveal emotions easily.)
I'm sure your dad did not react that way out of some deliberate effort to hurt you. One day perhaps you will have a chance to talk quietly with him about that. In the meantime, believe me, you and your father need each other; do not allow your pain and disappointment over his reaction to cause you to become estranged.
Remember too that for many people a sense of anger at the loss is also considered a normal part of the grieving process. I don't know why for I didn't go through that but apparently there are stages of grief that include denial, anger, etc. (Months later people would ask me "so what stage have you reached" like I should have a report card for my grief!)
I am praying for all of us as Mother's Day approaches and we have no one to celebrate with.
Yvonne

wd said:

To Yvonne thank you for your kind words. I take a piece of my soul with me in my mom's spirit. I KEEP THINKING well what DO I do? Another thing that I feel every day is like I'm drowning. I mean when mom died I had just gone home for a few hours to get some sleep. My dad was with her and when she died he went home and later called me. It was about an hour after her death. I just felt so angry, he left before I could go back to the hospital. Am I being unfair?? I don't know what to do. I haven't asked him why did he leave before I could go back to the hospital, mainly because if he says something wrong it will be harder for me to cope with. I am in so much pain

Permalink Reply by white dove on April 30, 2010 at 2:03pm

During times of much pain, and turmoil in our parents being ill, im sure you did the absolute best you could! There can be so much that is orchastrated into their care... WHO can keep up with it all? I know i tried my very best and still.. there was a major slip up. We aren't super human. We can pray all is covered, even totally exhausting ourselves.. then things happen. I do know my mom is flying with the Heavenly Angels... and her friends and family now... it tis us that are in pain....

Jalopy said:

My heart hears the pain each writer expresses. It is so hard to keep going when one so dear is no longer present in our daily lives. Regardless of our relationship to our Mothers, we all experience anguish over the incompleteness of our lives once our Moms have left us behind.
My most beloved Mom left behind a pain ravaged body on August 16th, 2007. Diabetes stole the life of a beautiful, loving woman. First through loss of her eyesight, then kidney failure which resulted in over 10 years of painful, but life sustaining dialysis treatments and ultimately, the battle was lost to the pain of dry gangrene, that I believe with all that is in me, was induced by dehydration by overzealous dialysis treatment.
I feel such guilt for not protecting my Mom when her dialysis treatments began inducing such pain that she would

Permalink Reply by Angela Hodges on April 30, 2010 at 11:18pm

I lost a loved one also and just wanted to share this encouragement.
Proverbs 17:17 says "A true companion is loving all the time, and is a brother that is born for when there is distress", so talking about your feelings to a true companion who will listen patiently and sympathetically will bring a measure of relief.
Something else that can facilitate the relief of grief is crying. Ecclesiastes 3:1,4 says there is time to weep, and the death of a loved one brings on such a time but it is a necessary part of the healing process.

Permalink Reply by Jalopy on May 2, 2010 at 2:09am

White Dove,
Thank you for your comforting words.
I have been on this road longer than you, but you seem to be ahead of me in accepting that we did all that we could and that the guilt for failing to protect those we love is pointless.
I am grateful that it is no longer a constant ache, but periodic. It just comes on with such force that it seems to knock the will to go on right out of me sometimes.
This is the last thing my dear Mom would have wanted. She was my cheerleader and she would never blame me for her pain, but I still feel like I let her down so badly.
I seem to return to the anger… Anger with myself brings on such heavy depression. I messed up. I didn’t push hard enough to stop the dehydration that was occurring and doing the damage soon enough.
Nearly a year before my Mom died, she began experiencing extreme heart issues during her dialysis treatments. Her blood pressure hit the floor, so low that they would tip her chair so far back that they had her practically standing on her head to try to ensure she wouldn’t have a stroke. They would reduce her treatment goal for the session, but then added an additional session – she went from 3 times per week to 4 times per week. They insisted on keeping her dry weight at an unreasonably low level.
My Mom had always had a weight problem. She had always had the same doctors and had always been treated at the same dialysis center. They knew she had lost a lot of weight over the years. But when she started gaining body weight after having to do less physical activity, they kept treating the weight gain by forced fluid reduction. They were dehydrating her and it ultimately killed her.
I did manage to convince my Mom to stop listening to the “threats” that she would have to go back into the hospital if she didn’t get the excess weight off through dialysis. They kept telling her she would get pneumonia again – she would be hospitalized again, which she feared more than death itself.
After my sister and I stepped in and Mom finally argued against the unreasonable weight expectations, her heart issue resolved completely. She didn’t struggle to breathe during dialysis and she regained her strength to a great extent. But it was already too late. She had already seen ugly black sores appearing on her fingers, this was later followed by her podiatrist finding that her big toe was also affected.
The tip of her ring finger turned totally black, it then progressed down past the 2nd knuckle. Next the tip of her thumb went. Nothing could be done.
The lack of blood flow during the dehydrating dialysis treatments had destroyed the circulation that was essential to keeping her appendages alive. They were dying and she was in constant pain.
Part of me wants to punish those where hurt my Mom, part of me knows that they did what they knew. But do I owe it to those who are still under the care of those who let my Mom down to report their failures - to prevent it from happening to others?
In my grief, when my Mom announced that she was discontinuing her life giving dialysis treatments because she couldn’t take the pain anymore, I did lay into one of the nephrologists from the dialysis center. I poured out my anger and told him that I felt that the dialysis team was responsible for killing my Mom. I don’t know if it made any difference to anyone.
Will I ever find peace if I don't report the failing of the dialysis team that extended my Moms life for so many years, but who also made horrible mistakes that put her through a living hell before she finally had to say "I quit", end this misery?
I learned to love the others that were on my Moms schedule. 12 people who were all under treatment at the same time, all being treated by a team that grew tired of their complaints and started treating them as numbers. Dry weights, not people whose diets change and who grew fat from inability to exercise - weight that increased, not from water intake, but from an appetite that was affected by other circumstances in their lives.... The pain induced by those that demand they live by a "dry weight" regardless of what they consumed. If their weight increased, the team took it off in water. Cramps that turned them into bawling lumps of humanity were ignored or treated, but the torture was continued to meet that apparently "God ordained" dry weight. Then the dehydration takes affect and the bloodflow is restricted. The limbs begin to die when their circulation is impeded for hours on end. Fingers dry up and fall off, toes too. Then hands and feet. And the pain becomes humanly unbearable. So dialysis must be stopped so that the pain will stop. Dialysis is the lifeline, but it is also the killer when treatment is overdone.
So many amputations had to be done when the appendages died. My Mom wasn’t able to have an amputation to remove the offending foot. The dry gangrene progressed from her big toe to all of her toes on one foot, but the surgeons said that the damage to her veins and arteries after her many years of dialysis made it impossible to amputate – the bleeding could not be stopped, the veins and arteries were stone- calcium buildup had made intervention impossible. She couldn’t have the dying tissue removed because she would then bleed to death. The pain was so severe no medication could be found that had the capability to control it.
FEAR - False Evidence Appearing Real. My fear is not reality - my Mom didn't blame me for her suffering, it is a lie that I must learn to push out of my heart when the attacks come.
Mom didn’t blame me, but I lost my best friend, my travel and shopping buddy…
My heart is broken. What do I do.... Will I always feel responsible for not intervening in time to protect my Mom from negligence that I recognized too late?
Is there life after such devastating loss....

Permalink Reply by white dove on May 2, 2010 at 7:58am

Dear Jalopy: I am on a vigil of sorts in reporting all that i feel, were responsible for my moms (too early) passing. I attacked all, in the beginning. To have it burn me out terribly. But that was nothing new for me! I reached a dead end with top CEO's (absolutely NO reply back to me). In fact just so u will be prepared.. they (im sure) gathered up a very expensive legal team for advise on how to get out of this one. Their strategy is to hurt your feelings again.. knowing we are vulnerable.. like beating a almost dead horse right? I also heard things such as: yur mom was ill, and elderly, it was going to happen anyway. Well a friend asked me this: What if your mom were standing at a corner and a drunk driver hit and killed her? Wouldnt there be an arrest? i had some time in between to recoup a little, and am now back to reporting them! To every single State and universal Medical monitoring agency i can find! YES we can make a difference. I feel its our duty, for others. I wish you much luck in your journey, for i sure know how u are feeling.. there is no way for "me" to "move ahead" until i seek justice. I personally cant' swallow what this Huge mongul of a medical empire, is trying to force down my throat! I too, flash right back. But i also try my hardest (without anti- d meds) in talk therapy.. so that i may enjoy other parts in life.. it is a constant struggle. Prayers are sent for you.... WD

Jalopy said:

White Dove,
Thank you for your comforting words.
I have been on this road longer than you, but you seem to be ahead of me in accepting that we did all that we could and that the guilt for failing to protect those we love is pointless.
I am grateful that it is no longer a constant ache, but periodic. It just comes on with such force that it seems to knock the will to go on right out of me sometimes.
This is the last thing my dear Mom would have wanted. She was my cheerleader and she would never blame me for her pain, but I still feel like I let her down so badly.
I seem to return to the anger… Anger with myself brings on such heavy depression. I messed up. I didn’t push hard enough to stop the dehydration that was occurring and doing the damage soon enough.
Nearly a year before my Mom died, she began experiencing extreme heart issues during her dialysis treatments. Her blood pressure hit the floor, so low that they would tip her chair so far back that they had her practically standing on her head to try to ensure she wouldn’t have a stroke. They would reduce her treatment goal for the session, but then added an additional session – she went from 3 times per week to 4 times per week. They insisted on keeping her dry weight at an unreasonably low level.
My Mom had always had a weight problem. She had always had the same doctors and had always been treated at the same dialysis center. They knew she had lost a lot of weight over the years. But when she started gaining body weight after having to do less physical activity, they kept treating the weight gain by forced fluid reduction. They were dehydrating her and it ultimately killed her.
I did manage to convince my Mom to stop listening to the “threats” that she would have to go back into the hospital if she didn’t get the excess weight off through dialysis. They kept telling her she would get pneumonia again – she would be hospitalized again, which she feared more than death itself.
After my sister and I stepped in and Mom finally argued against the unreasonable weight expectations, her heart issue resolved completely. She didn’t struggle to breathe during dialysis and she regained her strength to a great extent. But it was already too late. She had already seen ugly black sores appearing on her fingers, this was later followed by her podiatrist finding that her big toe was also affected.
The tip of her ring finger turned totally black, it then progressed down past the 2nd knuckle. Next the tip of her thumb went. Nothing could be done.
The lack of blood flow during the dehydrating dialysis treatments had destroyed the circulation that was essential to keeping her appendages alive. They were dying and she was in constant pain.
Part of me wants to punish those where hurt my Mom, part of me knows that they did what they knew. But do I owe it to those who are still under the care of those who let my Mom down to report their failures - to prevent it from happening to others?
In my grief, when my Mom announced that she was discontinuing her life giving dialysis treatments because she couldn’t take the pain anymore, I did lay into one of the nephrologists from the dialysis center. I poured out my anger and told him that I felt that the dialysis team was responsible for killing my Mom. I don’t know if it made any difference to anyone.
Will I ever find peace if I don't report the failing of the dialysis team that extended my Moms life for so many years, but who also made horrible mistakes that put her through a living hell before she finally had to say "I quit", end this misery?
I learned to love the others that were on my Moms schedule. 12 people who were all under treatment at the same time, all being treated by a team that grew tired of their complaints and started treating them as numbers. Dry weights, not people whose diets change and who grew fat from inability to exercise - weight that increased, not from water intake, but from an appetite that was affected by other circumstances in their lives.... The pain induced by those that demand they live by a "dry weight" regardless of what they consumed. If their weight increased, the team took it off in water. Cramps that turned them into bawling lumps of humanity were ignored or treated, but the torture was continued to meet that apparently "God ordained" dry weight. Then the dehydration takes affect and the bloodflow is restricted. The limbs begin to die when their circulation is impeded for hours on end. Fingers dry up and fall off, toes too. Then hands and feet. And the pain becomes humanly unbearable. So dialysis must be stopped so that the pain will stop. Dialysis is the lifeline, but it is also the killer when treatment is overdone.
So many amputations had to be done when the appendages died. My Mom wasn’t able to have an amputation to remove the offending foot. The dry gangrene progressed from her big toe to all of her toes on one foot, but the surgeons said that the damage to her veins and arteries after her many years of dialysis made it impossible to amputate – the bleeding could not be stopped, the veins and arteries were stone- calcium buildup had made intervention impossible. She couldn’t have the dying tissue removed because she would then bleed to death. The pain was so severe no medication could be found that had the capability to control it.
FEAR - False Evidence Appearing Real. My fear is not reality - my Mom didn't blame me for her suffering, it is a lie that I must learn to push out of my heart when the attacks come.
Mom didn’t blame me, but I lost my best friend, my travel and shopping buddy…
My heart is broken. What do I do.... Will I always feel responsible for not intervening in time to protect my Mom from negligence that I recognized too late?
Is there life after such devastating loss....

Permalink Reply by Jalopy on May 2, 2010 at 9:58am

Dearest White Dove,

Thank you once again for your words of encouragement. I am sorry that you too are struggling with the anguish of knowing someone killed your Mom. That is how I see it and your analogy of a drunk running her down is so right. I don't wish to see anyone jailed, but I do hope to find the courage to tell those who can make a difference to help protect those that are currently on dialysis and those to come.
There are so many kind and caring people in the medical profession, but there are those others who are just there for a good paying job. Their presence is frightening and they really need to be weeded out.
I observed as a dialysis tech told a weak, elderly woman that she was "grossed out" by the condition of the woman's dialysis access. The access was very hard and difficult. What was the woman to think or say to such a statement by a so-called "professional" who was about to begin a treatment that her very life depended upon.
This same tech called my Moms hospital room, before my Mom had decided to discontinue treatment, because she wanted to give my Moms' "timeslot" away to someone who wanted it. My reaction had been that it was not OK, that my Mom planned on being back and that we needed to maintain that timeslot because it was the only way I could be there with her due to my work schedule. I was sickened by the fact that my Mom overheard this phone conversation, and it was less than 24 hours later that she decided to quit treatment.
My Mom lived in fear that some of those treating her had the capacity to kill her. She tried her best not to make waves because she was afraid that there would be an "accident" that would take her life if she did or said anything that would get any of those treating her into any difficulty. This wasn't how she felt in her early years of treatment, but she developed this fear after years of observing the demise of many who shared her fate.
My Moms feelings about life on dialysis actually caused her to tell her youngest daughter not to push her 24 year old son, who was experiencing kidney failure, to go on dialysis. He had decided that if his kidneys did fail, it was his time to go.
Mom loved her grandson dearly, but she wasn't going to lie. She said life on dialysis is very very hard. Living daily with your life literally in the hands of people you aren't sure you can trust is very stressful. That was her reality for over 10 years and she did not wish that on her beloved 24 year YOUNG grandson even though she knew that it might mean his death too.
Negligence and brutality must be stopped and I hope that I will have the courage to do what you have been doing. Too many lives are impacted by these people. The patients suffer and those to come will also suffer. It is so wrong.
I had the opportunity to speak to an RN who had run a dialysis center before moving on after completion of her Nurse Practitioner degree. She agreed that serious errors were made, that I would be right to report these things to the State Medical board that oversees dialysis treatment. But the most frightening confirmation she gave was that Moms fears were legitimate. She observed that there are those medical practitioners that can and do kill those who cause them trouble.
I have been a coward and haven't done what I should have over 2 1/2 years ago, so - my fears have left those people I have cared about at the mercy of this group whose few bad apples have killed already.
How do I find the courage to put myself out there to be crucified for telling my Mom's story. The story that I watched, over 10 years as an observer in a dialysis unit, unfold time after time but not realizing that amputation didn't have to be the outcome of dialysis treatment.
I had to experience it with my Mom to see that it isn't always a "natural" outcome, but that it can be brought about by bad judgement and errors.
This rage at the wrongful treatment that resulted in my Moms' too early death gets in the way of anything constructive.
I again appreciate your candor White Dove. This is not a battle for cowards and I need to pray for the courage to make a difference for those who are trapped in the medical torture chambers.
God Bless you for your courage.
Jalopy

Permalink Reply by white dove on May 2, 2010 at 12:10pm

Dear Jalopy, i tried to find your page to reply directly, but couldn't. My prayers are with you, in being a warrior of sorts. Yes, it can be difficult in having to relive all, over and over again in the documenting of complaints~ I have even recieved a threat of sorts, but i won't let this stop me- period. There wasn't an attorney that would be interested (again, with my mom being elderly, frail) but i would LOVE to find a tv station that would report my MOMS story. :) And i have had a fear of talking infront of people... but for my mom... i will do it! I'm still searching for this opportunity. Of course this won't bring my mom back to us, but i feel it will make her smile even more, while she watches over us:) You can do this! Jump in anywhere and i would certainly report that particular employee that has no feelings.. If u care to chat i do have a page here.. just click on white dove. May God Bless you with strength, and in this will be some healing*

Jalopy said:

Dearest White Dove,

Thank you once again for your words of encouragement. I am sorry that you too are struggling with the anguish of knowing someone killed your Mom. That is how I see it and your analogy of a drunk running her down is so right. I don't wish to see anyone jailed, but I do hope to find the courage to tell those who can make a difference to help protect those that are currently on dialysis and those to come.
There are so many kind and caring people in the medical profession, but there are those others who are just there for a good paying job. Their presence is frightening and they really need to be weeded out.
I observed as a dialysis tech told a weak, elderly woman that she was "grossed out" by the condition of the woman's dialysis access. The access was very hard and difficult. What was the woman to think or say to such a statement by a so-called "professional" who was about to begin a treatment that her very life depended upon.
This same tech called my Moms hospital room, before my Mom had decided to discontinue treatment, because she wanted to give my Moms' "timeslot" away to someone who wanted it. My reaction had been that it was not OK, that my Mom planned on being back and that we needed to maintain that timeslot because it was the only way I could be there with her due to my work schedule. I was sickened by the fact that my Mom overheard this phone conversation, and it was less than 24 hours later that she decided to quit treatment.
My Mom lived in fear that some of those treating her had the capacity to kill her. She tried her best not to make waves because she was afraid that there would be an "accident" that would take her life if she did or said anything that would get any of those treating her into any difficulty. This wasn't how she felt in her early years of treatment, but she developed this fear after years of observing the demise of many who shared her fate.
My Moms feelings about life on dialysis actually caused her to tell her youngest daughter not to push her 24 year old son, who was experiencing kidney failure, to go on dialysis. He had decided that if his kidneys did fail, it was his time to go.
Mom loved her grandson dearly, but she wasn't going to lie. She said life on dialysis is very very hard. Living daily with your life literally in the hands of people you aren't sure you can trust is very stressful. That was her reality for over 10 years and she did not wish that on her beloved 24 year YOUNG grandson even though she knew that it might mean his death too.
Negligence and brutality must be stopped and I hope that I will have the courage to do what you have been doing. Too many lives are impacted by these people. The patients suffer and those to come will also suffer. It is so wrong.
I had the opportunity to speak to an RN who had run a dialysis center before moving on after completion of her Nurse Practitioner degree. She agreed that serious errors were made, that I would be right to report these things to the State Medical board that oversees dialysis treatment. But the most frightening confirmation she gave was that Moms fears were legitimate. She observed that there are those medical practitioners that can and do kill those who cause them trouble.
I have been a coward and haven't done what I should have over 2 1/2 years ago, so - my fears have left those people I have cared about at the mercy of this group whose few bad apples have killed already.
How do I find the courage to put myself out there to be crucified for telling my Mom's story. The story that I watched, over 10 years as an observer in a dialysis unit, unfold time after time but not realizing that amputation didn't have to be the outcome of dialysis treatment.
I had to experience it with my Mom to see that it isn't always a "natural" outcome, but that it can be brought about by bad judgement and errors.
This rage at the wrongful treatment that resulted in my Moms' too early death gets in the way of anything constructive.
I again appreciate your candor White Dove. This is not a battle for cowards and I need to pray for the courage to make a difference for those who are trapped in the medical torture chambers.
God Bless you for your courage.
Jalopy

Permalink Reply by Belinda Rhodes on May 3, 2010 at 9:49pm

whitedove, I wrote a note but had an error of course...I do feel better, I'll see if I cant send your a message! Belinda

(white dove) said:

I feel that as time goes by our extreme moments are fewer.. just me talking here, but even after our "firsts" i continue to have my days. This forum helps me to voice my not so good days.. of which i am very grateful for..for all of you! Today is one of those roller coaster down ones. Praying hard today!
Due to my ptsd caused by experiences in caring for my mama... i havent been ready to get back into the work force yet~ now it has terribly caught up. As old as i am.. i still need my mom. Please if anyone would care to, prayers would be much appreciated today for us. Thank u and God bless.

beverly said:

Belinda Rhodes said:

Barbara, I am so sorry for the loss of your mom. It breaks my heart you and your sister had to experience the pain the cancer was causing your mom. The decisions you made should never be second guessed, you never know how many hours, days, weeks, or months your mom needed to hang on, before she was set free, from the pain the accompanies this horrible disease. I am at a loss for words, or second guessing, why the staff could not get her pain under control. You and your sister are so brave to have hung in there with your mom, and let her know you were helpless with the pain management, but if love could take the pain away, you two sisters are a witness to all the world, even though you were not quite ready to loose a second parent in such a short time, but to have been there, offering her love and support...that if you could take any of the discomfort away, or a magic wand to stop the agony, you did the best you knew what to do, simply hold her and love. Keep in touch....Belinda

Belinda Rhodes said:

Barbara said:

My mom just died April 15, 2010. She was in terrible pain from cancer throughout her body and at times would scream from it. It was a blessing for her but it has left me devastated. The family all stayed overnight in the nursing home with her so she would not be alone when she passed away. She died in my sister and my arms at 4:00 a.m. I am now feeling pangs of guilt besides missing her. A week ago they said we needed to have a central line put in to keep her nourished and hydrated as she wasn't eating or drinking and they couldnt get IV's to stay in. I said no as I knew it was what she wanted but now I am wondering if it made her death even more horrible and led to her suffering more. My dad passed away 2 years ago and I know she never got over it and longed to be with him yet if I had the line put in she would still be breathing and perhaps they could have managed her pain level better. Anyway, I want my mom back and cannot bear that she is not sitting in her chair when I go in her house and I can never talk to her or see her. How do I get over this when 2 years later I still miss my dad.

Permalink Reply by white dove on May 3, 2010 at 10:03pm

dear Jalopy, just so u know, u now do have your own page and there are 2 messages there for u :)

Jalopy said:

Dearest White Dove,

Thank you once again for your words of encouragement. I am sorry that you too are struggling with the anguish of knowing someone killed your Mom. That is how I see it and your analogy of a drunk running her down is so right. I don't wish to see anyone jailed, but I do hope to find the courage to tell those who can make a difference to help protect those that are currently on dialysis and those to come.
There are so many kind and caring people in the medical profession, but there are those others who are just there for a good paying job. Their presence is frightening and they really need to be weeded out.
I observed as a dialysis tech told a weak, elderly woman that she was "grossed out" by the condition of the woman's dialysis access. The access was very hard and difficult. What was the woman to think or say to such a statement by a so-called "professional" who was about to begin a treatment that her very life depended upon.
This same tech called my Moms hospital room, before my Mom had decided to discontinue treatment, because she wanted to give my Moms' "timeslot" away to someone who wanted it. My reaction had been that it was not OK, that my Mom planned on being back and that we needed to maintain that timeslot because it was the only way I could be there with her due to my work schedule. I was sickened by the fact that my Mom overheard this phone conversation, and it was less than 24 hours later that she decided to quit treatment.
My Mom lived in fear that some of those treating her had the capacity to kill her. She tried her best not to make waves because she was afraid that there would be an "accident" that would take her life if she did or said anything that would get any of those treating her into any difficulty. This wasn't how she felt in her early years of treatment, but she developed this fear after years of observing the demise of many who shared her fate.
My Moms feelings about life on dialysis actually caused her to tell her youngest daughter not to push her 24 year old son, who was experiencing kidney failure, to go on dialysis. He had decided that if his kidneys did fail, it was his time to go.
Mom loved her grandson dearly, but she wasn't going to lie. She said life on dialysis is very very hard. Living daily with your life literally in the hands of people you aren't sure you can trust is very stressful. That was her reality for over 10 years and she did not wish that on her beloved 24 year YOUNG grandson even though she knew that it might mean his death too.
Negligence and brutality must be stopped and I hope that I will have the courage to do what you have been doing. Too many lives are impacted by these people. The patients suffer and those to come will also suffer. It is so wrong.
I had the opportunity to speak to an RN who had run a dialysis center before moving on after completion of her Nurse Practitioner degree. She agreed that serious errors were made, that I would be right to report these things to the State Medical board that oversees dialysis treatment. But the most frightening confirmation she gave was that Moms fears were legitimate. She observed that there are those medical practitioners that can and do kill those who cause them trouble.
I have been a coward and haven't done what I should have over 2 1/2 years ago, so - my fears have left those people I have cared about at the mercy of this group whose few bad apples have killed already.
How do I find the courage to put myself out there to be crucified for telling my Mom's story. The story that I watched, over 10 years as an observer in a dialysis unit, unfold time after time but not realizing that amputation didn't have to be the outcome of dialysis treatment.
I had to experience it with my Mom to see that it isn't always a "natural" outcome, but that it can be brought about by bad judgement and errors.
This rage at the wrongful treatment that resulted in my Moms' too early death gets in the way of anything constructive.
I again appreciate your candor White Dove. This is not a battle for cowards and I need to pray for the courage to make a difference for those who are trapped in the medical torture chambers.
God Bless you for your courage.
Jalopy

Permalink Reply by white dove on May 3, 2010 at 10:06pm

Dear Belinda, i checked...i left a message for u on your page.

(white dove) said:

dear Jalopy, just so u know, u now do have your own page and there are 2 messages there for u :)

Jalopy said:

Dearest White Dove,

Thank you once again for your words of encouragement. I am sorry that you too are struggling with the anguish of knowing someone killed your Mom. That is how I see it and your analogy of a drunk running her down is so right. I don't wish to see anyone jailed, but I do hope to find the courage to tell those who can make a difference to help protect those that are currently on dialysis and those to come.
There are so many kind and caring people in the medical profession, but there are those others who are just there for a good paying job. Their presence is frightening and they really need to be weeded out.
I observed as a dialysis tech told a weak, elderly woman that she was "grossed out" by the condition of the woman's dialysis access. The access was very hard and difficult. What was the woman to think or say to such a statement by a so-called "professional" who was about to begin a treatment that her very life depended upon.
This same tech called my Moms hospital room, before my Mom had decided to discontinue treatment, because she wanted to give my Moms' "timeslot" away to someone who wanted it. My reaction had been that it was not OK, that my Mom planned on being back and that we needed to maintain that timeslot because it was the only way I could be there with her due to my work schedule. I was sickened by the fact that my Mom overheard this phone conversation, and it was less than 24 hours later that she decided to quit treatment.
My Mom lived in fear that some of those treating her had the capacity to kill her. She tried her best not to make waves because she was afraid that there would be an "accident" that would take her life if she did or said anything that would get any of those treating her into any difficulty. This wasn't how she felt in her early years of treatment, but she developed this fear after years of observing the demise of many who shared her fate.
My Moms feelings about life on dialysis actually caused her to tell her youngest daughter not to push her 24 year old son, who was experiencing kidney failure, to go on dialysis. He had decided that if his kidneys did fail, it was his time to go.
Mom loved her grandson dearly, but she wasn't going to lie. She said life on dialysis is very very hard. Living daily with your life literally in the hands of people you aren't sure you can trust is very stressful. That was her reality for over 10 years and she did not wish that on her beloved 24 year YOUNG grandson even though she knew that it might mean his death too.
Negligence and brutality must be stopped and I hope that I will have the courage to do what you have been doing. Too many lives are impacted by these people. The patients suffer and those to come will also suffer. It is so wrong.
I had the opportunity to speak to an RN who had run a dialysis center before moving on after completion of her Nurse Practitioner degree. She agreed that serious errors were made, that I would be right to report these things to the State Medical board that oversees dialysis treatment. But the most frightening confirmation she gave was that Moms fears were legitimate. She observed that there are those medical practitioners that can and do kill those who cause them trouble.
I have been a coward and haven't done what I should have over 2 1/2 years ago, so - my fears have left those people I have cared about at the mercy of this group whose few bad apples have killed already.
How do I find the courage to put myself out there to be crucified for telling my Mom's story. The story that I watched, over 10 years as an observer in a dialysis unit, unfold time after time but not realizing that amputation didn't have to be the outcome of dialysis treatment.
I had to experience it with my Mom to see that it isn't always a "natural" outcome, but that it can be brought about by bad judgement and errors.
This rage at the wrongful treatment that resulted in my Moms' too early death gets in the way of anything constructive.
I again appreciate your candor White Dove. This is not a battle for cowards and I need to pray for the courage to make a difference for those who are trapped in the medical torture chambers.
God Bless you for your courage.
Jalopy

Permalink Reply by MARCI on May 5, 2010 at 10:29pm

I lost my Mom to pancreatic cancer oct 9,2007.middle of 5 kids I was their caretaker all my life. I will be 60 on Dec 1st. I am disabled but I left my home to care for Mom and Daddy,who is blind and disabled. 4 hours after her death, Daddy was grieving the loss of Mom's wedding rings not her. She gave them to me in june after the diagnosis. 4 days later Daddy says get out,stay out,don't come back.I did. Then wonders why I don't do all the things I used to???? then I get sued by Daddy(aka evil sister,drunk brother) I can;t type any more, but there are many like us. Mom knows, that is all I can say, My mother knows and loves me.

• ‹ Previous
• 1
• …
• 31
• 32
• 33
• 34
• 35
• …
• 65
• Next ›
• Page