"Dear Barbara, My mother passed two hours after being given a second shot of morphine and sedative. It was my fault. I panicked thirty minutes after the first dose. I thought my mom’s breathing should have been slowing down after the first shot so I called the nurse and asked if Mom could have a little more.
Much later I read that breathing fast is not necessarily a sign of pain but I thought she was in distress. Now, in hindsight, I think it was me who was in pain. I wish the nurse would have explained to me why my mother was breathing that way, but she didn’t say a thing. I thought that hard breathing would make her heart stop and she would die.
We had been by her side for days. One morning we asked the nurse and doctor if there wasn’t one small chance she could live on (I know this sounds crazy), but she seemed just like she used to, except that the breathing sometimes was strange. They agreed! Later on, after her death, when I asked, they admitted that they knew there wasn’t a chance. They lied!
My brother had gone home and I went to bed an hour before she passed, thinking she could rest after the morphine and we would meet tomorrow. A person from the staff sat with her. My God, we were in such denial! But what really hurts me is that we didn’t say goodbye. We told her how much we loved her all the time, but this not having a farewell has destroyed my life, I hastened my mother’s death and I went to bed.
It’s been 9 years now and from time to time I fall into this deep black hole blaming myself for my mother’s death. I find this extremely hard and heavy to carry. I wonder how much longer my mom would have stayed in that awake state with that difficult breathing? One question always remains: How do you forgive yourself?"
No matter how much anyone tells you it isn't your fault it will have no effect as long as you believe it was your fault. Since that is what you believe, ask your mother for forgiveness. As a mother, she will forgive you.
From the sounds of her last years she was probably grateful to be free of the heavy, cumbersome body that no longer worked for her. You and I have corresponded before about your mom and the guilt you are carrying. Nine years is a long time to not forgive yourself. I know you wrote her a letter and that it didn't do much to ease the anguish you feel.
You might try another letter and this time write her about the guilt you feel in letting her die. "Mom, I'm so sorry. I wish I had done things differently. This is not how I wanted you to die. I didn't want you to die EVER. I will always want you with me. I feel your death is my fault. I'm sorry I let you die."
From what you have told me I believe your mother's death was no one's fault, certainly not yours. Her body, after all the years of illness, couldn't continue and she died. No one's fault, not yours, not the nursing home. If anyone is at fault it is the physician and nurses who weren’t honest with you about how close to death your mother was.
To answer your breathing question, depending upon the disease or body condition in old age, breathing at end of life comes in many forms. It can be fast, it can be slow, it can be loud, it can be gaspy, it can be silent, it can be congested; none of it normal for everyday living, all of it normal for dying.
PS: I wrote and shared in this blog, with permission, because this woman is not alone in carrying feelings of contributing to the death of her special person. So many people write to me of the anguish they are carrying because they feel responsible for a death.
I read these letters and understand their pain and confusion. But I also get very sad and even angry that those who could guide and support family into helping them have a sacred experience without guilt, who instead are quiet, are not forthcoming with the truth that end of living is occurring.
Because most people don’t know how normal dying occurs and when medical people are not honest about what is occurring, people blame themselves. And way too often when people blame themselves they end up carrying the guilt with them forever.
Something More about... "I Feel Your Death Is My Fault. I'm Sorry I Let You Die"
I encourage those interested in better understanding what the dying process looks like to watch my 28 minute DVD, NEW RULES for End of Life Care and read Gone From My Sight: The Dying Experience along with it's companion booklet The Eleventh Hour: A Caring Guide for the Hours to Minutes Before Death
12 comments
My mother went in the hospital for a minor issue. she had really nothing wrong with her she was fully ambulatory dressed and up every day eating three meals and not even incontinent but they forced her to lie in bed catheterized her and took away her blood thinner and let her develop a clot and shot her up with morphine and sedatives until she died. I feel so guilty they killed her I should not have even brought her in there she had nothing wrong with her nothing at all her body was free of cancer or anything else I can’t live with myself this happened two days ago
———
BK Books replied:
Oh Jane, I’m so sorry. How horrific!! Unfortunately you can’t change what has occurred but you can take some action. Start with the doctor, find the rationale behind what was done. Go to the facility administrator and tell your story. If you assess wrong doing then report to government agencies, file complaints. For yourself write your mom a letter. Put all of your thoughts, feelings, anger at the system, regrets, tears and your love for her on paper. Burn the letter and scatter the ashes to the wind. Let how well you live your life going forward be the gift of love you give her. Blessings to you. Barbara
My 57 year old niece was diagnosed with dementia 6 years ago. Her mom was my sister who died 24 years ago from cervical cancer. I am ten years older than my niece and we’ve always had a close, loving relationship. My niece never married. has no children, has one brother. Six years ago I took her to the neurologists and to the tests and then brought her back to the home she lived in, calling her brother to inform him of the terrible prognosis. He took a back seat hands off approach. Over the past 6 years, with the help of my niece’s best friend, we got her home health care, took her to doctors, managed her meds, visited her, and provided her some quality of life. Her brother managed her finances. This past December her brother became more active in the decision making and due to circumstances was forced to sell her house and place her in a memory care facility. Since the day she was admitted her best friend and I have been completely cut out of any decision making process. My nephew has assumed this role, and he along with the facility have been doing a minimal job of caring for her. Her friend and I continue to visit once a week but the decline in my niece has been fast and steep. This past June I suggested to my nephew that he should request a hospice referral since my niece has been rapidly losing weigh. This referral process has dragged on all summer and last week her friend and I were finally told that she had the referral and the decision was made that hospice at this time is not required. For the past month or more my niece has not been eating or drinking, my nephew tells me that the facility assigns a person that’s supposed to be helping her in this area. My experience with the facility has been awful. They are extremly controlling, and don’t seem to be doing the right thing. I have no legal rights as my nephew is the POA and healthcare proxy. So, after 6 years of essentially making sure on a daily basis that she got the best care, I am left in the currently described situation and have zero power to help my niece. Me and my niece’s friend absolutely feel like she is actively in the dying process, yet the facility and the hospice that they utilize supposedly feel that she doesn’t need that service. I don’t know what to do. I feel my two hours of visiting per week is not doing much good at all. I feel much guilt when I see my niece and she communicates to me that I’ve abandoned her. Do you have any suggestions at all to ease this horrendous situation?
———
BK Books replied:
Denise, I am sorry for your situation. It sounds frustrating and heartbreaking. I wonder if you contacted your state Ombudsman for guidance. I Googled the following: The Older Americans Act specifically requires long-term care ombudsmen to act as advocates for adult care residents. Just a thought. Blessings to you. Barbara
Thank you for posting this.
I, too, believed “I killed my brother,” a story I won’t go into here. I went to therapy after his death to deal with these thoughts and feelings. I can hear him telling me, “Laurie. You did not kill me. This is not your fault.”
———
BK Books replied:
Laurie, you did the wise thing by getting counseling and support so that you can let go of the guilt. Let how well you live your life be a tribute to your love for your brother. Blessings! Barbara
Dear Barbara,
Thank you so much for this letter and response. I, too, have felt guilty for my mom’s death…even though my brain knows that it’s not my fault. It’s my heart that is taking time to catch up. It’s getting there but definitely not at the pace of my logical mind.
The irony, of course, is that my mom was a person of the mind and valued logic quite highly. I know she didn’t want to live a life with a brain that didn’t work anymore. And with two traumatic brain injuries within a year that was what happened. We were all on the same page—my sister, myself, and my mom—so that made things A LOT easier. She made her wishes known through a Healthcare Directive and an open conversation a few years before the injuries that caused her end of life.
I only wish I’d realized she wasn’t going to get better so she could have been in hospice earlier. It was hard to know when my feisty, intelligent, determined mom flipped over from healing to dying as 99% of the medical professionals were focused on getting her better. Because all of this was happening during Covid we weren’t able to spend much time with her. And neurologists (like all medical personnel) were pushed to their limits so they couldn’t spend much time with us to answer questions. And I never thought to ask any one of the many doctors who saw her in the hospital whether she was dying rather than healing. I wish that question had popped into my mind at the time. FWIW, we never, not once, had a nice sit down in a private consultation room with a neurologist to ask questions and/or hear difficult news. Our experience was not like the movies or TV. Not at all. But none of this is probably news to you…alas.
At any rate, your ‘little blue book’ and other booklets have been a tremendous help to me and my family. I’ve gone back to them frequently, recommended them to others facing end of life issues, sent them to family members who were struggling with questions, and will continue to exhort them to anyone who will listen!
Thank you so much for writing them and continuing your brilliant and much-needed work!
Lisa Blackstone
———
BK Books replied:
Hi Lisa, our medical model tends to only look at “fixing” a disease. It generally doesn’t “see” the person that lives and eventually dies from the disease. I see this as a huge fault in our medical system. Your mother and therefore your family were one of the luckier ones in that your mom had advanced directives in place to guide you. I’m sorry you were not given more guidance as to the progression of her disease. Blessings! Barbara
This frustrates me as a family support coordinator for hospice. Working with hospice is one of the most important jobs and rewarding jobs that you can have if done right. We incorporated family support into our program because we knew the importance of supporting the family through the process. This is such a hard time but also scary if you don’t know what to expect. We make sure everyone is comfortable with where they are in their journey both family and patient. Barbara we use your videos as training for our volunteers and staff. We also use your videos to sit down with families and view not once but twice throughout the process. Educating them on expectations is key to a peaceful transition. I hope that this family member will find peace in knowing that her loved one was on her own journey on her own time and there is no blame.
———
BK Books replied:
Oh Jennifer, I want all hospices to be as diligent as yours. What you have described gets a A+. Blessings to you and your entire team. Barbara
Leave a comment