If It's My Fault...

[emptyinside]

I have a relative's spouse who's a doctor at my father's hospital looking over my dad's medical records to find out exactly what happened to him. I had been following my dad's condition like a hawk, at his beside 24/7 for four months, taking copious notes, asking doctors lots of questions, researching whatever unfamiliar terms the doctors said.

This relative told me that his spouse is almost done looking over the records, that there are "diseases" that attacked him and a reason why he was so malnourished.

But as far as I know there WERE no diseases aside from the infection I already knew about and his congenital condition we all knew about. Maybe it's lost in translation (this relative doesn't speak English very well). But I'm scared to death...what if there were diseases, and the 15+ doctors who had looked over my dad had missed them in their dozens of blood tests and other examination methods? What diseases??? Could we have prevented them? How did he contract them??? Was it my fault? Maybe I had taken my dad somewhere (we were fond of going to lots of restaurants, amusement parks, etc.) and he contracted diseases in one of the places???

I just asked, just answer me this....was it my fault? Did I kill him? Could it have been prevented?

I'm shaking. Scared to death. I already blame myself for not taking the plunge and taking my weakened dad back home sooner, rather than letting him stay in a foreign hospital. I should never have listened to his doctors. I should have taken him back home. I'm so agitated. What if I really did kill him? I can't believe it. The one person I tried most to protect in this world probably died because I was too stupid to not get him better doctors in America. I just blindly listened to his doctors, waiting for him to gain weight and recuperate overseas, letting him go through all his follow-up appointments, instead of just taking the risk and bringing him back to America, where I am 100% positive he'd be taken care of. Then, after he passed, his doctor said, "You should have brought him back to America." HELLO. He TOLD us not to yet!?! He had follow-up appointments with medications to refill. I thought we'd finish off his appointments, wait for him to stabilize for sure, before putting him on a 15 hour flight, you know? I was so scared he'd undergo some emergency mid-flight, especially with the pressure changes, the crowd of people, the germs hanging around.

So I stupidly listened to this flip-flopping doctor and NOW I DON'T HAVE MY DAD. I'm so stupid. I mismanaged completely and let my dad down.

[leeann]

Em...

In my opinion....

His death was not your fault. You didn't "kill" him.

It was simply his time to pass.

And I think you are torturing yourself needlessly over this.

But what I think... doesn't matter.

You must, as all of us must, find a way to be at peace with his passing.

And in my heart.. I don't think the way to do that is going over medical details or second guessing yourself or anyone else.

Think about it.. what if you HAD brought him here...and he died. Then you would feel exactly the same as you do now. Responsible. But you aren't responsible. How could you be? Do you think you have THAT much control over the universe? You think you have that much power?

I hate to tell ya hon... but you don't. None of us do.

You have set yourself up to feel responsible no matter how or when or where your Dad passed. And I think if you explore why you have that need to be responsible for this... you might make some decent progress on your grief journey.

If I were you I would let go of that fear of causing this because, simply put... you didn't cause his passing. It was simply time for his journey here to end.

It was his life.... his choices.... his journey... his death. It was his after all. Not yours. Let him have his own journey. And then maybe you can continue your own.

And you were blessed to be a part of his journey. Maybe focusing more on that rather then some mistaken idea of responsibility may help you along.

Sure we all help our elderly parents... but ultimately... they make their own choices unless or until they can't any longer. And their journeys are their own and unique. The ending of his may really have nothing to do with you. It maybe was just his time.

And I think holding on to this isn't helping you and is making you feel way worse.

(((((hugs))))))

leeann

[AnnieO]

EM

I agree with Leeann. I don't want to seem cold or harsh...you seem determined to find a way to blame yourself for your dad's death. This had nothing to do with you. I had my mom at Mayo Clinic and a University Hospital, the best doctors in the country. They did 100's of tests on my mom for a year. They couldn't find what was causing her to be so sick, a year later , all it took was a simple blood test to find out why my mom was dying. I did the best that I could, with the info I had at the time. And so did you. None of what you are doing will change the fact that your dad is gone. You are torturing yourself. Do you have a grief therapist? I really think having one would be so helpful . I know your dad would not want you to continue this way, he wants you to heal. We all want you to .

[Vicky7784]

I'm new to the discussion group but glad I found it. My mother died last December at the age of 94. I have been tortured by thoughts that I didn't do enough to prolong her life. My mother and I were extremely close as my father died when I was 7 and I had no siblings. For the past 20 years, she had lived with my husband and I and our two daughters. She was the girls' caregiver while I worked. My mother was my rock and so devoted to me and my family. I admit I took all that for granted. She moved across country with us 4 yrs. ago when we relocated to a warmer climate. I didn't feel too guilty about uprooting her because all her siblings were gone and our small family was all that she had. Over the past few years she broke her hip, then her tibia, and her pelvis. Each time, she fought her way through in-patient rehab, which she hated. She was always so strong! Then, in January 08, she had a stroke. I expected her to fight her way back. She didn't have any paralysis but she had expressive aphasia. The words were clear but often nonsensical or she couldn't retrieve our names. Her glaucoma also worsened after the stroke. Nevertheless, I expected her to regain most of the skills she had lost so I made sure she had lots of speech therapy. I ignored the signs that she was slipping cognitively. I attributed the memory issues and spells of confusion to the aphasia or her failing eyesight. She started losing weight which she could ill afford. Her appetite waned and I would argue with her for not eating. I felt she was giving up and it made me angry because that's not what my mother ever did despite all her other challenges. For the first time, she began to repeatedly say things like "94 is too old". She withdrew somewhat--seldom speaking at the dinner table and just sitting in her room staring into space, not even watching TV. She was down to 85 lbs. Her geriatric doctor told me her lack of appetite was related to the dementia brought on by the stroke. The term "dementia" almost brought me to my knees. I refused to believe it. As the months went on, my mother had several minor falls due to poor balance even with the use of a walker. She no longer could prepare food for herself, which I blamed on her eyesight. Finally, in September I had to place her in a group home. She went reluctantly. It broke my heart but the caregiver there was wonderful. In October, she had another fall there and fractured her pelvis again. More rehab, then back to the group home. In early Dec., she appeared to have caught a cold. The next morning, her caregiver called to say my mother was too sick to even stand up so she called an ambulance. While in the hospital, the doctors diagnosed her with pneumonia and a UTI. She seemed to drift in and out of reality, often just calling out "pleeease" over and over. Two days later, they discovered she had lost the ability to swallow, most likely due to the dementia, which they were now calling alzheimers and/or a possible additional stroke. This is where my guilt trip began. The doctor in charge told me that it was "her time" to go. He said she was clearly a case of "failure to thrive" based upon her already skeletal looks and lack of coherence. I'm sure she was down to 75 lbs. He said the only option would be a feeding tube but even with that, aspiration pneumonia is common. He was adamant that the best course would be to place her in hospice and let nature take its course. A rep from hospice also spoke at length with me and urged me not to force my mother to live in such a deplorable physical condition . I was in a total fog. Being the only child, I was faced with this horrible decision. Everyone close to me agreed that I should let her die a peaceful death rather than hook her up to a feeding tube. She was too far gone for me to discuss it with her. She seemed so fearful and confused that I didn't want to upset her by asking such questions. So, reluctantly, I let them place her in hospice where she slowly died in less than a week. The morphine kept her painfree and my family and I were there with her till the very last breath. She slept around the clock that whole time until she died. The cause of death was listed as aspiration pneumonia but I'm plagued by the thought that she really died of kidney shutdown because she wasn't given a feeding tube. Therein lies my deepest fear. Did I kill her? Maybe she would have wanted to live longer. My husband gave me lots of examples of things she had said in the past indicating that she'd never want to linger so incapacitated but I'm not sure. I think about the Terry Shiavo case and think this is the same thing. Who was I to make such a decision for her??? In addition to the sometimes overwhelming grief I feel from losing my mother, the guilt over her manner of death consumes me at times. So, after this long description of my experiences, the bottom line is that I understand your questioning what you could have, should have done. I'm so mired in this that I don't feel I can offer any words of wisdom to help you other than for you to know that you're not the only one grappling with these issues.

[MartyT]

My dear Vicki,

I'm so sorry that your mother has died, and sorrier still that her dying and death were so tramatic for you, despite all your efforts to take such good care of her. As Christine Longaker writes in Facing Death and Finding Hope,

Usually, neither the dying nor their families fully understand the physical and emotional processes they are going through in facing death. In experiencing the dying process of a loved one, family members may feel as though they themselves are dying. They do not realize that their conflicting emotions, anticipatory grief, feelings of helplessness, anxiety, frustration, and guilt are perfectly normal. They lack the validation and support that they desperately need during this extremely difficult time. "Dying" is sometimes a harder process for the loved ones than it is for the person facing death . . .

I want to offer you some information that I hope will help to answer some of the questions that are troubling you ("Did I kill her?" "Who was I to make such a decision for her???")

Just yesterday as I was doing some other work online, I had the good fortune to stumble across a radio interview whose topic was End of Life Care in America. In this episode of Fresh Air, NPR's Terri Gross interviews Dr. Robert Martensen, who describes in a very personal manner the problematic ways the American health care system addresses the needs of dying patients and their families: http://www.npr.org/templates/story/story.php?storyId=102638208

In addition, I'm attaching to this post an article entitled Life Support Interventions In The Terminal Phase Of Life: Understanding The Unintended Consequences by Shirley Scott, RN, MS, CT, a nurse thanatologist and community educator:

The terminal phase of life occurs when all body functions begin to shut down. This may begin to happen a month or so, a few weeks or a few days before the person dies.

The blood circulates more slowly. The kidneys put out less urine because their function depends on a good blood supply. Swallowing may become difficult. The person's appetite disappears because the stomach and intestines are shutting down and cannot carry out their jobs of digestion and absorption. The heart and lungs function poorly due in part to slowed blood circulation and the changing chemical balances in the body. Communication is often restricted because of severe weakness and less blood supply to the brain. The person has multiple medical problems and is dying.

At this point it is necessary to keep in mind the possible unintended consequences of attempting to intervene with life support measures.

Click on the link below to download and read the entire the article:

LifeSupportInterventionsArticle.doc

[mlg]

Vicki

I am so sorry for your loss, but even more so for your hauntings. You did nothing wrong. You took care of your mother for as long as you could. What would you want at 94? A feeding tube would have only kept her hydrated. I firmly believe (even though I don't like it) that we each have a designated amount of time on this earth. It doesn't make it hurt any less but when I can get my senses together I realize that when it is our loved ones times there is absolutely nothing we can do to stop it. No amount of hydration, CPR, dialysis, etc. is going to change things. Especially with the elderly I feel we have to keep them as comfortable as possible and there is nothing in your story to indicate that your mother was not comfortable. Her body was just getting ready for its end.

Please do not feel bad in the choice you made. If you go back and read your own words your mother had been coming to this moment for quite some time. You just let her die in peace.

Take care and keep coming back here for support. We will help guide you through this journey without sugar coating in. We are there no matter what.

[kath]

Dear Vicki,

My grandmother also had dementia. She was 92 when she stopped eating and was just a skeleton of her former self. Our family (my mom was an only child but there were seven of us grandchildren) did what we could to keep her nourished. Finally, a hospice nurse was brought in and explained that we had the "privilege" of witnessing a natural death, one as a result of a life well-lived, where there was no disease to claim the person's body. She explained that Grams wasn't being defiant about not eating, she just wasn't hungry. It is a natural part of the process.

It's not easy letting go of the people we love and care so much for. At one point, Grams asked if she was dying. I was alone with her (my biggest fear being that she would die alone.) I was always honest with her and told her "Yes" she was. I asked if she was afraid. She said "No." That was the last time she spoke to me. I was with her and my mom when she took her last breath. She made it look easy, no valient efforts to prolong her life, just a peace that filled her whole being as she slipped away. I'm convinced it is much harder on us that are left to mourn than it was on my grandma.

The next day, our flowers were all tipped out of our planters. Grandma loved flowers and we could all picture her dancing again in our gardens, freed from the pain of aching joints and bum knees. I'm sorry you lost your mom. I know it's not easy, but I'm glad you could be there for her.

Kath

[Chai]

To em,

I think Leeann has a good point that all of us will have to come to face with: none of us are in control. It seems like we could have control if we tried so hard, but actually, the truth is that we did not have control, and we still don't. Life is out of our control. There are certain things we can control, but the passing of our loved ones? That is beyond us.

I am sorry you are hurting so very much, and I can relate to this feeling of "Did I kill him?" My father had a dream to create a healing center, and that dream was never fulfilled. Someone told me that the vertebrae that broke in him, C7, is related to success. So that made me think for a while - "I didn't encourage him enough in his work. He got depressed, and stressed, and thus got ill. If I and others had encouraged him more, he would still be alive." But the truth is, it is out of my control. My father made the decisions he made, and I supported him all that I could.

We are, at heart, our father's daughters, and we can only carry so much other responsibility - such as caretaking, such as helping with a business, etc. Ultimately, we are their daughters, and they love us for that and ask no more from us. They love us for who we are, and if we go beyond that, they are grateful, but they do not require and demand that of us, because they love us.

Similarly, I think you did all that you could for your father. No matter what the circumstance, these thoughts of "could have" and "should have" will sneak up on us. It is a struggle to push such thoughts away, and realize that we did all we could, but I believe in you. If you try - try just as hard, as you were when collecting your father's medical info., - because you are trying for your dad, and you are trying for you, just as he would want you to, then you can and will get past these guilty thoughts.

To Vicky,

I am so sorry for the loss of your mother and the very difficult trials you have gone and are going through as you think on this matter. Your mother loved you so much, and you loved your mother so very much. I think she was probably very grateful to have such a peaceful, painless time, and I think that that is something that makes a big difference. She was not in pain when she passed away, and she was surrounded by family. That is wonderful that you were able to do that for her, to be there. I think that you did all that you could, and there is nothing more that should have been done. Besides, all this "should have" and "could have" sort of thing are like toxic thoughts. They only make us miserable and slow our healing process. I think our loved ones would want us to try, however hard it is, to put away such toxic thoughts and to not hurt ourselves with such thoughts.

I wish you both the best in your journeys and struggles through this grief. It is so hard! We are all here for you.

take care,

Chai

[Vicky7784]

Oh, Marty,

I read the entire article you cited and it was just what I needed! Although I'm typing away with tears falling, I'm crying because I finally have a clear understanding of what the doctor and hospice workers were trying to explain to me. Maybe I was too distraught at the time to really hear them. All I had come away with then was that my mother was too weak to continue to live, so I had to pull the proverbial plug and let her die from renal failure due to lack of hydration. I guess what added to my anguish was that a week before she died in hospice, while still in hospital, she had a very coherent and nice conversation with my daughter. The next day they discovered she had lost the ability to swallow and I was immediately confronted by the doctor to decide whether or not to prolong her life via a feeding tube. My head was spinning. Although she had begun to regress again and seemed confused, I kept reverting back to that moment of normalcy as I struggled to make a decision. I wish someone had given me this article then. It all happened so quickly, I didn't have time to process it all. Within days, I watched her body slowly shut down and all I could think was that I was causing this to happen. This article gave me some peace and allowed me to entertain the idea that she really was truly at life's end when all this happened and I just helped find a way to make it as painless as possible for her. I hope I can continue on this more positive note as I move through my grief. Thank you so much!

[Vicky7784]

Mary Linda,

Thanks for your kind words. "Hauntings"--that perfectly describes what's been happening to me. On one hand, I'm grieving the loss of her companionship and guidance. She was my biggest cheerleader and now she's gone. But then added to that, has been the nagging sense that I shoved her through death's door. I read the article Marty suggested and it really did help, which surprised me. I'm hoping I can put those horrible thoughts to rest now and concentrate on moving through the grief of losing my dearest friend.

[Vicky7784]

Kath,

Your experiences with your grandmother do sound very similar to my mother's. The year before she died, I tried so hard to get her to fight--eat more, talk more, think more. The dementia was subtle at first and easily explained away as being related to the aphasia she had from her stroke. My mother had been extremely witty and mentally sharp until she had the stroke so I couldn't believe she would have dementia or that she was beginning to die. I always told myself that there were many more people living into their 100's and so would my mother. I'm slowly beginning to accept that she really had been dying for several months before the dementia took away her ability to swallow and forced me to make that unwelcome decision about a feeding tube. Sometimes I feel that my grieving process has me working backwards from the day of her death to many months before then as I try to make sense of it all. I guess I wasn't willing to see what was happening during that time but now I must process it in order to go on. At any rate, thanks for your words of support.

[Vicky7784]

Thanks, Chai,

Yes, it was a peaceful end to my mother's long life. The hospice setting was wonderful. We have a very small family since both my husband and I are only children but everyone my mother loved was in that room with her--my husband, our two daughters, and myself. Now I must try to look beyond the gruesome thoughts that have plagued me about the decisions I had to make regarding her and the sheer horror of watching her leave me. You're right--those thoughts are toxic and keep me from thinking about all the beautiful memories I have. With Mother's Day coming, I'm working very hard to stop reliving the painful memories and start thinking about the happy times we had together. She would never want me to do this to myself as she was all about loving and being happy. Thanks for your encouraging words!

[kath]

Vicky,

I just want to stress that what you are doing is entirely normal. That's a weird word, I know, because nothing feels like it will ever be normal again. I spent months re-thinking every last detail about my husband's illness and what the Drs. said and what signs did I misss, etc., etc. I think our human nature is to look for reasons, and there just doesn't seem to be a good enough reason when death happens to someone we love. You said your mother had a nice conversation with your daughter. I was told by hospice that there may be a day when Grams would become very lucid and appear to be her old self again. I was fortunate enough to be there on that day with my daughter. Her memory was so good, I'm afraid my daughter had gotten quite an earful of her mom's behavior in her younger years. What a gift for your daughter to have had that with your mom, too!

Kath

[emptyinside]

Vicky, I'm so sorry about what happened. Thank you so much for sharing your story in this post. I truly appreciate it that you understand what I am talking about. I'm so sorry. A lot of the things you wrote resonated within me.

I am talking to counselors. I feel like a failure on top of this because I can't NOT blame myself. I would love to be able to read all of your words and go, "You guys are right. It's not my fault." Then snap my finger and feel that. But I can't. I can only be honest. I hope you all understand. Chai, I think we're around the same age, but you are handling it so much better than I am. I think you're a stronger, more together person. Usually I am a together person, too, but my one Achilles' heel has taken me down. This was the ONE thing I knew would destroy me. And the fact that I'm not feeling better, even after a few months, has made me feel even worse (I feel so bad I can't post "I'm getting a little better" messages on here). I'm a bad liar. I just tell the truth. I'm just not as good as all of you are, which makes me sadder.

MartyT's posting about the end of life process kind of affirms I was extremely negligent. After my dad was moved to a chronic hospital to recuperate because he was getting better and supposedly didn't need the regular hospital (or so the doctors said), I flew back to go to classes, which was an idiotic move. Why? Because he was still skinny, and I didn't know that his absorption and intestines were getting worse. I didn't know that's why his j-tube wasn't helping him gain weight. I thought it was just a very slow process and he'd put on pounds in a few months. Now I know maybe his intestines were shutting down....THAT's why he said he was not hungry. I had assumed he was not hungry because he was getting a lot of nutrition through his j-tube! He was getting 6 or 7 cans of nutritional drinks through his tube a day. I thought that's why he wasn't feeling hungry anymore. I thought that was a sign it was working! But now I read these end of life symptoms and am APPALLED I flew back home when I thought he was recovering. I stupidly trusted his doctors. They said he was getting better. Little did I know his body was actually SHUTTING DOWN? What? He had been very talkative, very alert, just as normal. He looked better. After months by his side in the hospitals, the doctors sent him to a chronic hospital, with conditions that he'd have to come back for follow up appointments and prescription refills and monitoring. So I thought, hey, okay, he'll have to stay a few extra weeks until all his appointments are done, then he'll fly back and I'll be ready to take care of him at home. I didn't know he was SLOWLY dying in the interim. I feel so awful. I don't control the universe, but I believe actions we do on earth do have consequences in our own circles we interact with. Drunk drivers kill people all the time. Mothers of people killed by drunk or reckless drivers sob on camera and demand justice, demand those responsible to be in prison. Many times the drivers did not intend to do it and feel extreme remorse, but they often do have to pay for it by law.

I just blame myself because he was my best friend and I was the one he trusted. His death was preventable, and I don't think I can believe it was his time. I see news about little children dying every day. No graduations. No birthday parties. Never to marry. I don't believe it was their time. And I don't believe it was my dad's time. Not everyone dies at the right time. It's something we say to make ourselves feel better, and I've become so cynical I cannot believe it. I dislike sayings of people going to a better place. What's better? Not seeing your kids and spouse? What's better? Seeing people you love dissolve into tears and so much pain? What's "there" that is so better? What's wrong with here? There are a lot of things he desperately wanted to do, and it's not fair he didn't get to do them. My dad was AMAZING and worked so hard and had lots of bad luck. He should at least get a few extra years with those he loved most. It's not fair that I went from a perfectly happy person to a mess who spends her time trying to get better but not being able to, not even a little. Geez, I'm amazed at what a failure I am.

[leeann]

Em

You are not a failure. You are grieving. It is very common to have guilt during the grief process.

I am glad you are seeing a counsellor.

I think you will stop blaming yourself and feeling responsible for his death...... exactly when you are ready to. You will put that burden down when you no longer have a need to carry it.

And as I have said many times here.. being critical of my grief process made everything worse. So if I were you I would curtail judging yourself or your grief process. Just let it be what it is.

((((((Hugs))))))

leeann

[Tnwalker]

I understand your "could da, should da" I took my husband to the emergency room on a Thursday, overnight they looked for the right blood with antibodies. He was on oxygen and just barely hanging on, but on Friday night after I had been there, he called and sounded like he always did cheery. I said to him, I would come back up there and he said, no, you can't see at night to drive. I also said I had scheduled a workshop for the next day. As usual he thought about my well being and say, no, go and enjoy. He and I both were in deep denial.

I am still feeling guilty for not going to have that last sharing and holding him because by the time I arrived on Saturday he had slipped back into oxygen with his eyes closed. Kathie

[Chai]

Dear Em,

you may not believe in yourself, but we all believe in you. You don't have to believe all the "he's in a better place" stuff said to make you feel better. If it doesn't make you feel better, it doesn't. That doesn't mean that something is wrong with you. It just means that your way is not the way that is satisfied by those answers. You carve your own path. It does mean, though, that you might have to try a little harder than people who are satisfied by those kind of answers. You are on a big searching journey of the self, and it is up to you to find the answers that are right for you. It is possible! We are all looking for the right answers. WHen others' right answers don't coincide with our thinking, that's fine. We are each individuals.

But we are together as a community of grief support. We are supporting you, em. You may be a wailing, puddle-y mess, but we are these invisible little hands holding you up, or at least huddling around you in this dark hole of grief, stuck with ya, buddy. But at least we're all stuck together, right?

Oh, trust me, the guilt thing goes the other way, too! (And ironically, trust me - this "betterness" is not my doing, it's my dad's. It's his super serene power of peace working through me, like he's helping me from "the other side." It's thanks to him that I'm "handling" it as well as I am). I may be "doing better," but I don't feel good about it! I feel like I should be more "in the dumps" and I'm afraid that school is the only thing holding me back from it, and that as soon as I'm home alone on a weekday I will turn into a sobbing piece of wreckage. Seriously.

Go you for going to counseling! It can help. Even just to spill your guts out like that, helps. You can talk about anything, there. Even stuff you don't talk on here. Even stuff like...oh, morbid stuff. Like, I would say more to my friends, but I don't want to freak them out...so I got to say some of that stuff to my counselor. Just stuff like...how fast it all was. How scary. How my dad couldn't even hold a pen properly, and I look at these pictures of him scribbling away and it makes me so sad...sad for him. Regardless of all that "he's with God," stuff, or "he went on to a happier place" - I am STILL sad for my dad! That I wasn't there, to share his grief, in that moment when he realized he would have to give up so much in the face of disease.

Anyway, I'm going on...suffice to say...we are here, and I want to give you a hug now.

((((HUGS)))),

Chai