Debilitating Guilt

[AngieB]

My precious mother died last week on March 5th, 2020 at 1:40 p.m. I can hardly believe that I am writing this. Her funeral and burial was yesterday and my mind is in shambles. I apologize in advance if this is all jumbled, but Im just trying to make sense of everything that has happened. 

My mom has been sick for a long time. I have been her caretaker for over 20 years. I never married or had a family of my own because I wanted to take care of my mom. I have no regrets in that, I spent the time taking care of her the way she deserved. She had a multitude of chronic illnesses such as Chronic Obstructive Pulmonary Disease, Pulmonary Hypertension, Congestive Heart Failure, Chronic Kidney Failure(Stage 4), a tracheostomy, and she was a chronic CO2 retainer and had to wear a bipap at night time to help keep her levels from being too high. She survived septic shock twice in 2012 and has always fought her way back from multiple hospitalizations each year. However, in October 2019 that all changed. 

My mom went to the hospital October 6th able to eat and drink and with sharp cognition. She had aspiration pneumonia and ended up having a feeding tube placed because she suddenly couldnt swallow. Im not sure if she had a stroke while in the hospital or what exactly happened. She ended up being sent to a long term acute care facility where they were trying to rehabilitate her so that she could come home. After a 2 month stay, she was sent home on Hospice on December 12. She went down hill fairly fast. There was a time where she was getting up without assistance and was trying to relearn how to swallow. Then one day she just couldn't. She became extremely weak and was unable to get out of bed without 2 people assisting her. 

About a week before her death, she started to withdraw from me. She would smile and talk to other people, but she didnt say much to me. I was hurt by it honestly, because I had been the one taking care of her 24/7. I know now that she did it so that she would let go. My mom and I were very close and she did not want to leave me to go to the hospital in the past when she was sick, so I know that she would hang on even in death. Her last words before she became unresponsive was "my baby girl". After that she became unresponsive and did not talk or open her eyes. 

She had been wearing her bipap continuously because she was just having such a hard time breathing and I could not suction her without causing so much distress. I awoke one morning and she had a lot of mucus running from her nose and mouth and her oxygen was in the 70s. Her kidneys began shutting down. She was like that for around 3 days. The nurse told me that I needed to think about removing the bipap from her because it was possibly prolonging her life. After the nurse left, I went and sat beside her and held her hand. I stroked back her soft hair and told her how much I loved her and I removed the machine on my own terms.

Needless to say, I was not prepared for what happened next. I guess I had some fairytale idea of what her death would be like. I hoped and prayed that she would pass away peacefully but it was not peaceful in my eyes. After removing the bipap she started doing the death rattle and her beautiful eyes open and became fixed. The nurse had me do some atropine drops and then give another dose of morphine. The nurse came back and sat with us shortly after that. She told me that the oxygen my mom was wearing was not helping and that it could be removed. She said that she would remove my moms trach to help with the secretions. But I did not let her do it. I did it. I guess it was my way of showing my mom that I was letting her go. I could sit there and tell my mom that it was okay for her to leave me and to go be with my dad and with God, but removing her trach was my way of freeing her from the chains that kept her here. She died 20 minutes later, drowning in her own mucus. She was purple and gasping for air and there wasn't anything I could do to save her. I promised her that I would always take care of her and that I would do everything in my power to save her. But, I failed her this time. I feel like I killed my mom by removing the bipap, tracheostomy, and oxygen. What if the oxygen would have at least lessened the air hunger she was experiencing? Did I hasten her death? I know she was dying but I can't help but feel responsible. I feel like the nurse pushed me into speeding up her death and I feel so incredibly guilty. 

Im so lost and alone and I just want my mom. 

[kayc]

I am so sorry for your loss of your mother.  When we hear the death rattle it's because they are ready to go, some may look peaceful, some may not, but I doubt what you did hastened her death, merely allowed it to take place without unnecessarily prolonging life she couldn't sustain.  In our society we seem to not want to allow death to occur when it's ready, we do much to prolong life, even when it's not in the person's best interest and sometimes I think in so doing it prolongs unnecessary suffering.  Undoubtedly the nurse realized that.  As this continues to haunt you, I would ask the nurse about it and share your concerns and give her a chance to address them.  You were taking on a role that few of us are equipped for, that you took care of her so lovingly and devoted to her is to be commended.  

I hope this article will be of help to you in the days ahead.  I know what it is to be a caregiver and to lose that role when my MIL died.  It can complicate the things we're feeling as well.

Wishing you some peace...always remember the treasure she left you with her words, "my baby girl."

https://www.griefhealingblog.com/2016/10/in-grief-after-caregiving-ends-who-am-i.html

[MartyT]

9 minutes ago, kayc said:

we do much to prolong life, even when it's not in the person's best interest and sometimes I think in so doing it prolongs unnecessary suffering.

This is so true, Kay. What we do in the name of prolonging life is often in reality just prolonging death. When the body shuts down, there is little we can do to reverse or to stop the process ~ but with all our technology and machinery, there's a lot we can do artificially to make it last longer.

I agree completely with everything you've written here, and I hope this devoted daughter takes your words to heart. I'd also recommend the work of Barbara Karnes, RN, a hospice nurse who's given her all to educating the public about death and the dying process. Find her on Facebook and on her website, here: End of Life Care and Bereavement and here: BK Books  ♥️

[Glen Myers]

Hi AngieB,

My name is Glen Myers.

My heart goes out to you, truly. My mom left this world almost a month ago, early Valentines Day morning, 2/14/20.
 

She had also been sick for a very long time, suffering from COPD, Heart disease, diabetes, emphysema, and lung cancer. I was her primary family caretaker for the past ten years, not full time, but as often as I could be there. These wasting diseases are terrible, and it breaks your heart to watch your mom struggle for every breath, even before the end.

I have a lot of guilt that I am trying to figure out how to let go of as well. I should have been there more at the end. I’m the one that had to refuse life saving measures that could have helped her hang on. I’m the one that told them to extubate and switch to comfort only to ease her passing. I told them to let her die.

I at least had my wife, sister, and friends around us both as she passed. I am so very sorry that you had to go through this alone, and that you are still suffering in solitude.

I try to console myself with the fact that she told me specifically what she wanted. She knew she had no quality of life left. Six months ago she told me she couldn’t live another year like this. By the time she was unresponsive, holding too much co2, with her pressure dropping, I knew what she wanted. That didn’t make it much easier though. 

She was suffering. She was ready. She had tremendous faith and was not afraid to die, but was still terrified of the process that was in store for her; gasping for air, suffocating.

I made the right choice, and so did you. You’ve just got to believe that. Even if you or I had made different choices the most that would have accomplished was a drawn out death. Their bodies were just done, their race was run, it was time to go home.

From what I understand from our nurses and the reading I’ve done since, the final moments can range from peaceful to traumatic (for us), but when a lung patient is that far gone they aren’t feeling their bodies reactions, their conscious mind is already crossing over.

These women, our moms, showed indomitable spirit in their final years, waking up each day knowing that it was going to be a struggle just to breathe, but they did it anyway... every day. They fought. They tried. They cried. They wanted to give up, but they didn’t. Fighters to the end.

You and I, we need to try to take a page from their book, and let the examples of courage and resilience they showed us manifest itself in our lives. We can get through this. It is not our fault, we made the best decisions we could for them. Tomorrow, when we wake up, they will still be gone, and we will know before our feet ever hit the floor that it is going to be a struggle, but we will do it anyway... every day.

We will face our burden just as they did, we will focus on breathing in and out, on getting through the day. There is no easy way to lay down our guilt, but when we feel it, we have to remind ourselves, out loud if necessary, that we did what was best for them, that their suffering is ended, that they are at peace. 
 

I’d like to leave you with one thing that has helped me. I have always been a writer, and writing out my thoughts and feelings helps me process them. Keeping a grief journal can help you get your feelings out.

Specifically: set a timer; 10 - 20 minutes; give yourself a writing prompt on what you want to work on (like ‘She’s gone.” Or “I feel so guilty.”) or don’t use a prompt at all and just go off the cuff.

Start the timer and start writing. Don’t stop, don’t go back to fix a misspelling or grammar error. Keep your hand moving, write what comes into your mind, let it lead you where it wants to go. Don’t shy aware or tone down the painful or scary parts It’s hard, and takes a little practice, but don’t let your hand stop until the timer has gone off. Finish your final thought, and close the notebook.

Don’t read an entry until a couple days after writing it. Let yourself separate from its emotions, then go back and read it. As you do, forgive yourself for the negatives and embrace the positives.

I hope this helps you in some way. You aren’t alone. It’s not you fault. Breathe in, breathe out. One day at a time.

Sincerely and with love,

Glen

[MartyT]

You speak from your heart, Glen, and with the hard-won wisdom that comes from personal experience. Blessings to you, and thank you so much for sharing with us your insights and useful suggestions. Your mom must be very proud of the fine son she has produced in you. ♥️ 

[Kieron]

I, too, am sorry to read about this loss you describe so touchingly.  While the one I lost was my partner rather than a parent, I do relate to the guilt and feeling responsible, as it was up to me to give the order for a DNR and to watch him labor to breathe his last, once taken off the ventilator.  As you say, it was no fairytale passing.  It took an hour of gasping and slowly shutting down.  I received a crash-course in Death Education 101 in that mere span of time. 

I despise watching movies, now, when someone is dying dramatically on-screen in mere moments.  If only it were so easy, as if falling asleep  Even with my new understanding, it took me a lot longer to really learn what we are never told until it's too late: that the dying person often begins to disengage, to lose their grip on the world around them, or even intentionally withdraw, even from loved ones, as if trying to prepare us, or as if they are wanting to be free of a body that had simply worn out.  And it takes a lot of energy for them to do this, leaving them with little left over for communication.  Of course this is a generalization... but I really regret not knowing this and other things.  It would have eased so many difficult moments in that final day or two.

As Glen so eloquently states, he made a choice, you made a choice, as did I --with the best instincts, with the best information we had at the moment.  Remember also that includes being a member of a society that simply refuses to equip us with the knowledge of the one thing that comes, eventually, for every last one of us.

[MartyT]

11 hours ago, MartyT said:

I'd also recommend the work of Barbara Karnes, RN, a hospice nurse who's given her all to educating the public about death and the dying process. Find her on Facebook and on her website, here: End of Life Care and Bereavement and here: BK Books 

It's not so much that "society simply refuses to equip us", Kieron. We DO live in a death-denying culture, and since we're not exposed to death and dying on a daily or regular basis (unlike those in war-torn countries, for example) most of us have little or no personal experience with it ~ but nowadays valid and reliable information about death and dying is readily available ~ if we are open to it, able to find it, and willing to learn about it. 

[kayc]

Glen,

Beautifully written post, and I'm glad you mentioned that it helps to express yourself such as through journaling, it is part of the grief processing and very validating.  I am sorry for your loss as well.

[feralfae]

Dear Glen and all,  I often think the time we spend here, expressing the feelings which seem to surround loss, death, and grief is the time we are journaling among caring people, who can read our words and validate our feelings. I still carry some guilt that I could not save Doug from cancer. We went to extraordinary measures—clinical trials, special doctors, diets, cancer consultants, trips out of the country—willing to try almost anything that we thought might save him. Realistically,  we gained three more years for him than the oncologists thought he would have. But still, I felt a lot of guilt that I could not find a way to save him, although I have no background in cancer care or medicine. Somehow, I felt I could have done and should have done more. Even now, eight years later, I still have attacks of guilt about not being able to save his life.  Yes, there has been great sadness and grief about his leaving, but there is also some part of me that finds it hard to let go of the guilt. 

And so I want to say a word of solace and caution: when we lose someone very close to us, it is easy to feel guilty that we could not overpower death.  Sometimes, we are able to escape death and live longer, but sometimes, it is simply time for that person to go. While we are feeling guilt, out of balance, lost in the world, and have that huge gaping hole in our heart, we are very vulnerable. Be careful to not make any big decisions, do not let bad people take advantage of you, and stay close to those you know you can trust.  especially because of the guilt, we often attempt to compensate of make things better by making changes, even seeking out a new social group. Our best resources are our family, church, close friends, and coming here to share and vent, to be among others who are grieving and sharing their stories of loss. Take time to plan before making decisions.  Discuss major decisions with family or your financial advisor. So many time I have been ready to run away from my home and all that is here, just because the memories of Doug still live here. Now I am glad i waited all these years, gaining my own balance back, able to make my own decisions above the fog of deep grief and guilt. 

So, come here, journal here if you'd like, share your sorrow and your feelings of guilt and being lost. We hold each other together here, helping each other to find balance, helping each other put our lives back together in this new pattern that often has no partner, parent, sibling, or other loved ones. But here, we can vent, share, support each other and find peaceful ways to go forward with our lives. It is a slow process—and wanting out of the pain makes it seem even longer. This is a wonderful place of support.  It is a sanctuary against the demands of life and the world. Here is a safe place to share and heal.  I am very glad we have found it. *<twinkles>*