Nana's Nook: Did I do enough?

Rosalyn Carter once said, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." Seems I have been a caregiver for quite a long season, most recently for my stepmom. Losing her has been, and continues to be, extremely difficult and painful and raw.

Two moments I cannot seem to erase from my memory: Sheila sobbing and exclaiming "I don't want to die!" in her hospital room June 12th, and the very vivid way she died in hospice three days later.

She'd been sick for 15 months before she finally went to the doctor, and I don't mean "sick" in the sense of "not feeling well." She had lost over 30 pounds in less than 5 months, could not control her bladder function, was in severe pain, and routinely had large amounts of blood in her urine--and I mean LARGE amounts. By the time I convinced her to go to the doctor, the outlook was grim--three to six months, he said, if she did nothing. I saw his eyes...he really meant to say, "three to six months, regardless of what you do." We still made the effort though; she went to a specialist in Nashville, got pep talks from various medical staff, survived some scary hospital stays, and finally agreed to move in with us and go to the hospital in Asheville. I knew the cancer had spread, and so did she, if truth be told, but we were betting on a few more years, hell, even one more year, with a halfway decent quality of life, even if it meant chemo and radiation and surgeries. She would be with us, her family. So, the day after my birthday, on June 3, Alex drove to Knoxville and brought her here. Her level of pain was so severe she could barely walk, so we gave her our room. After two days, we went to the ER, and from there, she was admitted to the hospital. Tests, tests, and more tests--the staff was incredulous as to how she had been managing on Tylenol alone--and we discovered the cancer had spread--to her pelvic cavity, to her spleen, and to her lungs. Surgical removal was no longer an option. Even more challenging, her right kidney had not been working for over 6 months because of the tumor encroaching on it, but the urologist and oncologist were hopeful they could get it going again, at least enough for her to survive some very toxic chemotherapy. Six hours after that procedure, our hopes were crushed...again. Her kidney function was not improving, so the only option left was for her to endure five grueling weeks of targeted radiation--and then the radiation oncologist added, "palliative care radiation" to the treatment plan, stressing that it was in no way to be perceived as curative. None of the treatments were.

That was a dark night, and one of the night shift nurses sat with me in the family waiting room, holding my hand, offering me coffee, and watching me struggle with my thoughts, with the reality of it all, with the decision I would have to help Sheila make in a few short hours. That morning, at 7 am, I crawled into bed with this woman who was more of a mom to me than my biological mom, and told her we needed to talk. I explained what the doctors and said, reviewing and summarizing the whirlwind events of the past 7 days. I held her hand, and tried not to cry, and told her what the options were--6 weeks of hell she may not even survive, or palliative hospice for whatever remaining hours she had left. She cried harder than I have ever seen her cry before, and my heart just broke into a zillion pieces, and then, when the orderly came in with a gurney to take her to her treatment, she abruptly said, "Get out. No more damn treatments." Then she turned to me, and told me to start dialing the numbers of every member of our immediate family, and she would tell each one, in turn, how sorry she was...that the news was not good. Family came and family went, and I was just going through the day like a robot, no emotion, no feelings, just completely shell-shocked. She moved to hospice on Friday, more family came to visit her there, and by Monday evening, she was "actively dying," as the staff told me. Don't misunderstand: the staff was wonderful, personable, empathetic, compassionate, and just stellar. They explained what we would see, what she would experience, each step along the way, and never kept us waiting longer than 30 seconds when we pressed her call button. I have watched people die before, in all manner of sorts, but I have never actively participated in the death of someone I love.

Her last few hours with us, she was pretty much out of it--not just from the morphine; her body was truly shutting down. She held my daughter's hand about 9 pm, told her she loved her, and that was the last thing she said. The next 90 minutes we watched hopelessly as her body pretty much just sank and shriveled up; her breathing became more irregular, her skin grew mottled, her cheeks became sunken in, and she had this horrible rattle in her throat. The nurse explained it was her lungs giving out and gave her something to loosen the secretions--secretions that were filling her throat and her mouth, and I grabbed an oral swab and kept clearing her mouth, talking to her, telling her to go, to be with dad, to go to Jesus. I was only dimly aware of anyone else being in the room, but could hear my sister Nancy talking and my daughter Becky crying. Then, suddenly, it was over, and she was gone. Dead. No longer there.

Since that day, not an hour goes by that I do not relive those last 12 days, that morning on her hospital bed, and the final hour of her life, and I second-guess everything, every single act, every decision, every delay, every "oh well, she will be okay" and every moment I spent with her (and also the ones I was not with her). I beat myself up for not forcing her to take care of herself last year, for not being a better, more demanding patient advocate, for not grabbing her by the arm and making her go to the oncologist as soon as we got that dreadful diagnosis. I want someone to explain it to me, to tell me why no one told us until the last few days that our hope was futile, why no one could be honest with us and just tell us to prepare for death. I regret making her cry one day when I was tired and frustrated and I yelled at her for not going to the doctor sooner--before we knew how really bad it would get. I want to shake the stuffing out of her friend for not making her go to the emergency room before she lost so much blood, for not calling me or any of my sisters and telling us how sick Sheila truly was. I am mad at myself for letting my daughter witness her grandmother's last few moments on earth, because it is not at all like TV or the movies; she will have that horrible moment forever engraved on her mind, as well. Mostly, I am angry and pissed at myself for not being able to save her, or at least to have brought her home to die here, instead of in a strange place (even though the hospice house was absolutely wonderful to us). Did I do enough? Could I have done more? Why didn't I just move in with her after my dad died in December? Or move her in with us?

Did I do enough?

Yes, my faith is intact, and yes, I am well aware (and grateful) that God controls all things, and works all things for our good for those who love Him. I am at peace with that, and with her time, manner, and place of death. I know this guilt, this constant merry-go-round of shouldas and couldas and wouldas will not change the outcome. I do not have that kind of power, to change the future, to change God's plan. So, intellectually, yes I know I did what I could, and I loved her, and the guilt that I feel is a normal part of loss, especially for a caregiver. But the human part of me, the emotional side, the critical, nagging, "I will never be good enough" part of me just keeps asking the same question, over and over again.

Did I do enough? Did I do enough? Did I do enough?

There's a song by Warren Zevon, "Keep me in your heart for a while," the song the hospice music therapist recorded Sheila's heartbeat over. Perfect, simple, and beautiful song.

Shadows are falling and I'm running out of breath