My mom died on March 24th after a battle with sepsis... She was 70.
She had a slough of other issues. She had COPD + CHF for many years. She was hospitalized in the beginning of Feb for respiratory failure with hypoxia and pneumonia (she had an O2 sat in the 60%'s when they found her... she had been living in assisted living).
After her hospitalization, she had to go to rehabilitation because she was weak and needed OT/PT regularly before she could go back to assisted living.. my mom begged to leave, she did not want to be in rehab and I had talked to the doctor caring for her at the rehab facility/the director of nurses and they both said it would not be wise for her to leave - she was very weak and needed the therapy. So I explained to my mom the benefits of OT/PT and decided to keep her there. Also, assisted living would not take her back until she progressed because they didn't have the equipment/staffing necessary to give my mom the care she needed.
She had gotten c. diff infection less than a week after she arrived at the SNF. She was hospitalized a week after arrival at the SNF for the infection when they noticed my mom's vital signs weren't looking right. I don't know if the infection was acquired from the SNF, from the recent hospital stay, from the result of taking antibiotics and steroids for pneumonia while in the hospital... I'll never know. But she ended up getting sepsis, and they were able to cure it.
She was discharged from the hospital and went back to the SNF. She was weaker than before, and she never really recovered from the infection. The c. diff came back after her course of Vancomycin was done, and she also ended up getting COVID and pneumonia. She was hospitalized again.
She was released from the hospital again and returned to the SNF... she looked like she was finally getting better. But I got another phone call less than a week later, and her vitals were looking bad again. She was hospitalized and passed away less than 24 hours later from septic shock from an "unidentified source".
I had to make the call to remove her life support in the ICU. The floor doctor and the intensivist both told me her prognosis was poor. Her kidneys were failing, her heart went into afib, her liver was starting to fail, her blood work was horrible... She was unresponsive. They had her on a bunch of different antibiotics (zosyn, vancomycin, dificid, ceftriaxone, doxycycline) and the infections weren't responding to anything.
I feel guilty for a multitude of reasons:
1. because I moved her into rehab and she wanted to leave... I knew she needed the advanced care that they could provide, but she never wanted to be there. She wanted to leave. And I made her stay. I visited her once a week, but I still feel guilty for leaving her there.
2. I made the call, alone, to take her off of life support. All of my family lives in a different state than my mom and I... I'm not sure how much help having them around would have been. The doctors told me I did the right thing, but why do I feel like I killed my mom? By making her stay in the rehab facility + removing the life support, her death would technically be my fault on all ends. Because, what if she hadn't gotten these infections if I didn't make her stay in rehab?
I am having a hard time fighting this demon in my mind... that I am ultimately responsible for my mom's death.. it's been hard. Her and I were close.. My dad died when I was 12, so we were all each other had. I miss her, and I don't know if there was anything I could have done differently.
For those in a similar situation - how did you cope? How do you prevent the guilt from eating you up inside?
Thanks in advance.
When it comes to end of life issues, it's important to remember that things can't be "fixed". One way or another, your mom had several life-limiting conditions, which resulted in hypoxia.
Left alone, she would have died, in terrible distress.
You got her to the hospital, where an attempt was made to treat her multiple conditions.
Full stop there. You found she was in distress and got her care. You did what needed to be done. You did good.
So after hospitalization, what were her choices? It's important to remember that sometimes, there are no "good" choices, only the least bad ones.
She wanted NOT to go to rehab? What were the alternatives that were available?
Was Hospice offered as an option at any point?
You’re a loving daughter, and I’m sorry for your loss.
I’m so very sorry that you are hurting so much. All I can say is that you loved your mom very much and you did what you thought was best for her. In time, I feel that you will have a different perspective.
Now, you are questioning some of your decisions. I understand this. It’s fresh in your mind. You are still trying to process what and why things happened as they did.
There is absolutely no way that you could have predicted what would happen. You can’t go back and change what happened.
I feel the most important thing is that deep down your mother knew that you loved her. Please find comfort in knowing this. Your mom would never in a million years want you to be in agony over her death.
Please do not blame yourself. Sending you a bazillion hugs and wishing you peace as you continue to grieve over the loss of someone who was so loved and dear to you.
As for guilt... you know that you didn't cause her death. From what you've said here, there was no avoiding the outcome. She needed the time in rehab; you wanted her to get better. Taking her home instead would not have helped, and you'd probably be blaming yourself for not letting her stay in rehab. Forcing her body to keep going on life support would have been cruel. You loved her enough to set her free, so to speak.
Your mom knows you love her. If you believe in an afterlife... do you think she is angry at you now? Resenting you? My guess is NO! She sees your true, glowing heart. She would want you to be happy for the rest of your time on this earth. She left this earth knowing you would be okay.
Your mom was so fortunate to have you! We all should have such a kind, loving and conscientious person to help us through our final struggles.
Blessings and peace to you as you mourn your dear mom.
Nothing you did caused her death -- it only postponed it.
Please accept that these thoughts are part of grieving and not a reflection of your choices.
You loved your mother and took good care of her and she knew your love. You both were blessed to have one another. Please be kind to you now as you go through this huge loss. My deepest sympathies and prayers for peace for you now. Your mum is not suffering any more. ((((((hugs))))))
If you choose to, you can do what I did, although I had the luxury of doing it a bit before my LO died.
What you will do is research EVERY PIECE of the care you chose for her, and by doing so, you will be TOTALLY ASSURED that your choices were humane and sensitively made and reverently and sweetly administered on your mother’s behalf.
An example- I was horrified to learn that hospice at times administers medication(s) that can hasten a suffering patient’s death while relieving suffering.
My LO was an active Catholic her whole life, so I searched out the eminent theological/philosophical experts in the field and read examples of their opinions. Relief from guilt!
My LO suffered from horrifyingly large open pressure wounds. Again, compassionate writers who were international experts in the field AND the caregivers who tenderly cared for her every day gave me the assurance that the course of her care was comprehensive, but NEVER with the assumption that there was an end goal of recovery.
In your introductory letter, you describe the process you used to justify her course of rehabilitation therapy. It must have been excruciating to you to hear her pleas to leave.
But you know, that the decision that you made in that situation was totally based on facts that you were told and were observing for yourself. From fear and discomfort, your mother begged for something you nor she could realistically accomplish.
The last key to achieving loving acceptance for yourself and realizing that your difficult choices were made in the only ways you could make them, is to remember that as we deal with end of life care, there are very often some decisions to be made that can yield NO HAPPY ENDINGS, but they are decisions that MUST be made, however you, as responsible party, can make them, and then, allowed to be let go.
Could this be where you are? If so, you may allow yourself to realize that what you were able to do was done from the love you felt for her. I pray daily for “those who suffer”. May you release yourself from that list soon.
Every one who tells you this kind if second guessing and self recrimination is part of loss and grieving is absolutely telling you the truth.
It is obvious from your post that you did your very best to do right by your mother.
Love yourself for that.
I, too, blamed myself for "killing" my mom. I cared for her through her dying breath, and administered the pain relieving drugs that eased her way into death. For awhile, I felt responsible for that. In time...at least 6 months later, I began to accept how powerless I was over her death. I knew I'd done everything I could to help her live and bring her comfort, and ease her suffering,
but Death wins in the end.
Being the caregiver and the decision maker over another human beings's life and death decisions is an enormous responsibility...and can complicate the grieving. Please remind yourself of your loving intentions in all the decisions you made for your mom. Grant yourself some grace by being as kind, loving and patient with yourself as you (no doubt) were with your ailing mother. That grace, and time, will heal your heart.
You made the decisions you made with the information you had at the time. Never second guess yourself.
After all she went through her body was so weak from fighting all sorts of things attacking it. A body can only do so much. It does not matter how old you are when this much is going on it takes a toll.
Ask yourself...
Would mom have wanted to live for any length of time on life support? A week, 2 weeks, a month, 6 months? Each day on life support drains the body more. Yes "it" can be kept alive, functioning, existing if you will, for a while but at what cost.? And I am not even talking the financial cost. The emotional cost, the psychological cost.
Remember your mom with the good thoughts and memories not the last few weeks of her life, she would not want to be remembered that way.
She may no longer be with you in this world, but her soul is with you while she waits for you in the next.
*big hug*
I am so sorry for your loss. We will start there.
But as a nurse I can tell you that your mother had at least THREE dire diagnoses, any of which was dreadful enough to kill an elephant. THREE.
I know all about sepsis and C-Diff and COPD. I spent my life as a nurse.
Ashley, did you purposely and with malice aforethought CREATE those diagnoses and give them to mom hoping to kill her? Did you refuse to cure her when you could have?
NO, of COURSE you didn't. So you are guilty of WHAT? Of allowing her peace when her life was a torment? You didn't cause this and you are not God and couldn't cure it, therefore guilt is the wrong G-word, and words we tell ourselves are very important.
What you are feeling is not guilt.
You are feeling grief. You are feeling terrible for your loss, unable to speak to your Mom and be reassured you did the right thing. Do you think she would have wanted to go on in that torment? Because she could NOT have survived it.
GRIEF is the G word now and when you accept it you can move from woulda/shoulda into the awful work of LOSS.
We all die. We all lose the ones we love. It cannot be stopped. It must be endured.
Your mother would not have wanted this for you. I cannot help but believe she would have been unhappy and disappointed that you would do this to yourself. I think that you must know that. I hope that during your long lives together your Mom told you she would not want to endure the things she was going through.
My beloved brother, who was Hansel to my Gretel in every single dark wood of this life, the beacon to guide me, the hand that was ALWAYS THERE to grab my own in times of trouble died of--------guess what--------Sepsis with the consequent C-Diff from vanco. Ashley, before he left me I, an ATHEIST, prayed to every god in the entire world to take him, to everyone he loved who had gone before him, to come get him....just in case there was SOMETHING out there that could help him die.
I got hospice at his request. And he was gone in two weeks.
Do I miss him???? You can't imagine how much !
WAIT!!, YES YOU CAN imagine it. You are living it.
But would I wish him back to suffer that when there was nothing ahead of him but the oncoming onslaught of Lewy's, NO. I thank whatever powers may be that he is safe now, at peace. If that means I suffer along without him a bit until I am gone, that's the way of it. For so many.
Hon, if you cannot pull yourself out of this, if you cannot celebrate you Mom and yours and her good memories while still you must mourn her, if you cannot recognize that you helped your mother, I suggest therapy with a Licenced Social Worker in private counseling practice. She/he will help guide you through.
Remember, you do your mother no honor in this blaming of yourself. It is a kind of hubris to think YOU are responsible for your Mom being gone, that YOU could have prevented it. I repeat, you aren't god. Now you do her honor by celebrating her life, and by paying forward the love.
Again, I am so dreadfully sorry for your loss and my heart goes out to you. It is an agony, this, that can't be changed. It is no one's fault.
When someone dies, we often look for ways to mentally reverse that outcome. "If I had done X, she wouldn't have died, and things would be so much easier now." That's normal. It's the kind of magical thinking we all go through. Go through it and then leave it behind.
Guilt is for people who deliberate effed someone over. You didn't do that. You're sad because you loved your mom. In time, you'll adjust to having her gone and get better at remembering the happy times. Until then, know that you're normal and were a good and loving daughter.