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guilt related to end of life decisions 
Started by lynnld
13 Sep 2008, 4:11 PM

my mother passed two months ago after two years of decline following a hemmorhagic stroke, she finally lost her ability to swallow and ended up with pneumonia, we made the decision to not treat, the doctor felt she would only end up with pneumonia over and over and that we would just be delaying the inevitable. I am absolutely tortured with our decision, it seemed so cruel to stop her IV. My family has all dealt with this differently. I am angered that my sisters have gotten on, how can this decision be so casual, I ask myself everyday " how could we make this decision" I am tortured!!!!!!!! it doesn't get easier, I pray everyday that I would get a sign that we made the right decision. I feel so alone as no one understands this, my family want me to see a counsellor but i think how can they be helpful unless they have training in this area. I am in the GTA, just north of the GTA, if anyone has gone through this and knows of a counsellor who deals with this issue. If you have experienced this and can share with me, i feel so alone. I barely function, it feels like one step forward but 5 back.
Lost and so confused,
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Reply by Kari rw
12 Feb 2011, 7:34 PM

I recently lost my Mom after her 4 month struggle with a rare brain cancer. after her chemo treatments were done, we had her home and she look really good. for the first time we had hope. we left the hospital that night wondering if we should take her home and hire 24 care as we knew it was risky to leave her alone in the room. she could not get out of bed on her own and made frequent bathroom trips. my dad had been staying right in the room with her for months, but he was physically and emotionaly exhausted. saddly, that night , the hospital found her on the floor, suffering from a brain hemorage due to brain trauma. she passed without being able to do anything, we wonder, should we have left? soemone should have stayed with her, we should have made sure there was a comode by the bed, we should have had her at home where we could have kept a close eye on her, if we've had known it was going to end like this, we would have had her at home or the lake house where she longed to be so have a peaceful final months of her life.
I have to tell you about mine so you know it's not just someone patronsizing your situation. We wondered how we could have left her and not protected her after her fighting so hard to live. there is no right or wrong - it's only doing what you have to do based on what you are forced to deal with. Looking forward, if your Mom suffered for another few months, was in pain and then passed anyway, would have looked back and realised you could have saved her from all of that? that is a very unselfish decision you had to make although it be very difficult. please give yourself a break. pain is such a waste what little precious time we have left. good luck and LIVE for her.
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Reply by Livvy
29 Jan 2012, 6:19 PM

I am picking up on this post much later on, but as I have just begun as a contributor to Virtual Hospice, I have some catching up to do!  My situation is somewhat different than the two described above, but I thought I might share what my sister, father, and myself encountered when my mother chose to have home hospice so that she could allow herself to die in her own bed in a way that she chose. She had debilitating arthritis for over a decade and had tried every medication and suffered through numerous treatments that she clearly felt were worse than the illness itself. In fact, when she eventually had home care, the hospice nurse asked her to rate her pain level between 1 and 10 (10 being the highest) and my mother calmly said, "Oh, about a 7 or 8." The nurse gasped! "When patients describe a level above 5 we are shocked!" she said. My mother had grown so used to the pain, she thought it was normal. She had very little relief over the years. She had long told us that she would choose to end her own life when she felt that her quality of existence was not what she wanted in life. The moment came when she made this decision and so our small family rallied around her. I quit my job and moved from Canada back to Maine, my sister brought her baby with her from where she was living an hour away, and we both moved into my mother's apartment to help her die with dignity. My father was also very respectful of my mother's decision. Her choice was to receive pain care from the hospice nurse and to discontinue her intake of food and, eventually, water. You can imagine how hard this was for all of us to prepare for!  But, at the same time, my mother was so clear that death would be a relief for her and she commmunicated this to us lovingly and clearly. She helped us to help her. What was particularly difficult was her request that she not be visited by people whom she loved and who loved her. It was so hard for us to keep this prohibition in place since she had been an extraordinarily well-loved professor for 35 years. All her students and colleagues wanted to be with her, but we had to respect my mother's wishes. This was an enormous source of guilt for us that was almost unbearable at times. Secondly, our mother asked my sister and I to leave her side as she neared the end. She needed to "do this by herself." I cannot even begin to tell you how difficult that leavetaking was but, as in all things, she was so stoic and calm and supportive that she somehow made us see that this was the right thing for us to do if we truly loved her. We each went back to our homes and my mother died lest than 48 hours later. It has been more than 13 years since she has been gone, but I have tears welling up as I write this. But we all should know, I think, that the ones we love exit this world knowing that we adore them and care for them immensely. No matter where you were or what decision you had to make, know that your mother left this world surrounded by a love from you that always translated itself into your wish to support her and to have her released from pain and suffering. I think all our mothers will be liberated from worrying about us if they know that we have stopped worrying about whether we did the right thing. They are safe now and would want us to feel only love for them, not guilt.
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Reply by Cath1
30 Jan 2012, 1:21 AM

Hi Livvy:

I don't have the stamina to write much tonight, but I just wanted to say thank you for sharing your story. I feel for you and what you went through when your Mom was dying and its so wonderful that you are able to use your experience to help others. I love the fact that even though you found your Mom's wishes difficult to carry out, (in terms of her accepting visitors, and especially in terms of her asking that you and your sister not be present when she passed over), you did it despite your own reservations and trusted your mother's direction which I am certain she appreciated! What a remarkable testimony to the depth of your love and respect for your Mom! Every mother knows their own child best, and it also is a touching tribute to the extraordinary love a mother has for a child, even the adult "child".

When my Mom's time came, I didn't know if I would be present at the precise time when death came to call upon her, but I wanted to be there, and at the very least I wanted her to be with a family member when the final moment came. I was about to leave the room for a break when my daughter said that my Mom had opened her eyes and was looking at me. Thankfully, my daugther's observation ensured that I was there with my Mom to experience the moment she drew her last breath. It's as if my Mom sensed that I was leaving the room and that she knew she was about to leave the world and so she beckoned me back so I could let her go. My mother knew on a very instinctive level that I needed that moment, just as I believe she needed it with me. It's a thought that comforts me whenever I think of it now.  

When I came to the part of your story where you said that you were brought to tears as you wrote about this painful time in your Mom's life and yours, though thirteen years later, it caused me to cry as well, so tenderly you desrcibe the memories and I can relate as I, too, still weep as I recall those heartbreaking and difficult days when my Mom was dying a little over a year ago now.

As for the guilt we all feel, or most people do in my experience, I believe it is a natural response when someone we love dies, as suddenly we seem to remember all the ways we may have hurt them or didn't appreciate them fully when we had the chance. While usually guilt is not justified, and our desire to be spared one single bad memory involving our loved one is understandable as it only seems to exacerbate the ache in our hearts, I think it happens because until we actually say a final farewell to someone we love deeply, we cannot fully comprehend how precious is life and those with whom we share it and love the most.

Death in my opinion brings a heightened awareness of love, a deep enlightenment about life and ourselves and relationships. Death seems to bring out a wish to return to another time, to the safe arms of our loved ones who loved us so well in spite of our flaws and we wish we could make things perfect so that one painful memory will not sully the memory of our cherished loved one, the person we love more intensely than ever after death. Yet, I also know that it is not realistic nor healthy to seek or expect perfection and that a part of the letting go involves accepting not only our loved one's death, but our fragile humanity and theirs. Guilt can have a healing place in our process of grief though if it helps to broaden our awareness of others and increases our sense of compassion for them. If our guilt can inspire us to become more forgiving, more tolerant, and more loving, if it can make us more completely engaged in life and with people, it can be a catalyst for positve growth. At least for me, that is how I have used any guilt I have felt and rather than deny that I have felt it, I allow it to help me to heal as I hope to help others do the same.

I especially love the last two lines of your post. As a daughter and as a mother and grandmother, I know these are very wise words.

Have a great evening, Livvy!:)

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Reply by Plum1
10 Feb 2012, 3:51 PM

Dear Lynnid,
I am a member of the Virtual Hospice community, and want you to know that I have taken in your call for help, and care very much about the pain and torture you are feeling. All of us know that we could one day be faced with the decision of whether or not to continue the treatment of a loved one, and yet, humanly, we also deny that it will ever actually happen. Last year my mother was in emergency and the diagnosis being entertained led to a doctor approaching my father, brother and myself with the need for us to consider what we would choose. I was shocked that this was really happening to us. And it was very painful that my father was responding differently from my brother and me.
In your case, it sounds as though your whole family made the same decision, something which could be comforting to you. It seemed the best decision to all of you. However, your feelings since have been so different from the others who do not seem to be feeling as much pain. You are needing the suuport of family just now, and they are not able to be there for you. That is very difficult and lonely.
Coming to peace around the decision you made may take time. It is all mixed in with your grief at the loss of your mother. Because of the depth of your feeling, I agree that it might be very wise to seek out a counselor. I do not live in the GTA. But you could begin by speaking to your family doctor. Or you could speak to the social work department of your local hospital. I am sure one or the other will direct you to a resource.
In the meantime, know that the Virtual Hospice community is here for you. You can freely share all that you are feeling.And use all the potential of this site. The professional team of the site is in Toronto. 
 Know that I care very much, and will be thinking of you. Please let us know whether you are able to find help.
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