Today, December 13, 2020 is the fifteenth anniversary of my mother’s transition. Until this time I haven’t shared the details of my experience of her death.
There are so many things I would do differently, most are details that would matter only to me, however one thing I believe could’ve changed the outcome.
I want to say right off though, you can’t be a doula and be a daughter at the same time. You just can’t. There are family dynamics, emotions, fears, hopes, anticipatory grief, expectations, and underlying currents at work that you can’t, as a daughter, step out of enough to BE a doula. That said, it doesn’t mean you can’t be a great daughter, in attendance, advocating and emotionally supporting your mother, but I wasn’t that either.
I know this is long so I appreciate you even considering to read it all. It is not meant to be an all inclusive recount of the events, but rather a highlighted exploration of needless trauma. If I were to write it as an account of the experience there would be many many more details about the emotional and relational aspects.
It started on a Tuesday with a call that Mom was in the Emergency Department with difficulty breathing. I was at work and rushed over as soon as I could. I found her in a cubicle sized exam room when I arrived. She had her chemotherapy appointment a day or so before and said she just wasn’t feeling right and was having a hard time breathing.
When her cardiologist came in my mother introduced me like this, “Dr. Kramer, this is my daughter Judy. She hates chemo.” To which he replied, “Yes, it is nasty stuff.” He stated that Mom had congestive heart failure and they would be running additional tests.
The hospital was full, she would wait hours in that cubicle sized room until a patient room opened up. I was working a relatively new job as a therapist in a psychiatrist’s office, and had to return to work, but visited her between patients later in the day. I found her that time in a room that I would’ve sworn was a janitor’s closet earlier that day. It was set off by itself long past any other patient rooms, and as far away from any staff as you could get. We sat for a while and talked about what the doctors were saying and what tests were going to be done. She waited until I was halfway out the door, late for my next appointment, to say, “I’m afraid.” I replied, “I bet you are. This is scary.”
Thing 1 I would change. I would’ve turned around and stayed with her. It turns out the patient I was late to see had cancelled and it was not the policy of the office to call and let therapists know when scheduled appointments cancel. My last appointment of the day was a no show. So, yes, I would’ve stayed with her. I would’ve explored that fear more. I would’ve been a great daughter who was attentive, present and emotionally supportive.
When I returned on Wednesday I found her in a different room wearing a rebreather mask. She was worried about the Christmas cookies she had committed to baking for the hospice she volunteered for. The same hospice I worked for just months before starting my new job. She wanted me to call the volunteer director and let her know the cookies wouldn’t be done.
At this point the diagnosis changed to add pneumonia to the congestive heart failure. I remember seeing the x-ray of her lungs…It looked as if they were wearing woolen sweaters. Where there should be clear darkness, there was fuzzy white. They started her on antibiotics.
When I returned Thursday she was on a different type of mask. Her breathing was no better. Her lungs were no better. I knew from my years of working as a hospice social worker that chemo compromises the immune system and that if she was not responding to the antibiotics in 24 hours it was not good. I emailed my Aunt because my father was not ready to call the family in for visiting. My Aunt was not only my father’s sister, but she was my mother’s best friend since long before they were married. There was no way I wasn’t going to tell her what I knew.
By Thursday night the medical staff was out of options. The pulmonologist wanted to do a bronchoscopy to get a biopsy of her lungs to see what kind of infection it was so they could target the treatment. The problem is that after the bronchoscopy she would need to be on a ventilator for an undetermined amount of time. This is something my mother was adamantly opposed to.
Ten years prior she completed a Living Will specifically declining artificial life support. As we discussed the treatment options around her bed she spoke as loudly as she could through that mask that she did not want to be on a ventilator. However, she was ignored. My father is a very intimidating man and overrode her decision; insisting the doctor do the test. Later on, when I would bring up the Living Will Mom signed to attempt to advocate for her, he jumped up, towered over me and yelled, ‘WHAT piece of paper?’
When everyone left the room my mother again reiterated to me that she did not want to be put on a ventilator. We talked about it awhile. I encouraged her to talk to her husband, again, but she wouldn’t. So, I walked her through a process to get her to a place of peace about being on a ventilator short term, if it meant possibly finding an answer. She made me go to her house to bake up the cookie dough she had started.
During this whole time I needed to also be present for my twelve-year old daughter. I had pulled her out of school twice during this time because I wanted her to have every option to have last memories with my mother. Every day my mother got worse and every day I thought would be her last. I was also keeping my mother’s older sister informed who was living in a nursing home. I continued to keep my other aunt informed, as well.
Friday morning they did the bronchoscopy and by Friday night she looked like a blown-up balloon. During the bronchoscopy they pierced her lung and she was filling up with air. Bloody drainage came from the chest tube and she was indeed on that ventilator. Her doctor went out of town so we were left with an associate. The results of the bronchoscopy were inconclusive so an infectious disease doctor was brought on to determine whether or not to try fungicides or to start her on penicillin, which she was allergic to.
By Saturday she was in multi-system organ failure and treatment options were still being discussed with my family. I was hearing lab results familiar to me from my work in hospice. I started to push the medical team about these things and realistic expectations. She agreed to be on the ventilator for a period of three days. She was only continuing to decline since. I failed at keeping her off the ventilator; I would not fail at keeping my promise that it would be short term. That night my father decided that my mother should not be left alone and he wanted me to stay at the hospital.
During the night my mother woke up on the ventilator and wanted my sister, my father and my husband there. She didn’t want to talk until they were there. She wanted my sister and I to get along. She wanted us to watch over our father. She wanted him to stop smoking. She wanted my husband to take care of me. And she wanted to say I love you to all of us.
The staff set me up in a room far away from my mother’s to stay. I wasn’t allowed to sleep in a cot or recliner next to her bed. What was the point of staying if not in her room? It was all too much for me by that time. I called my Aunt in the middle of the night because I just didn’t have anyone else to talk me off the ledge I was on. I’ll never forget the comforting voice on the other end of the phone saying, “Hold on. I’ll be there tomorrow” as I sobbed for the first time.
Sunday morning came and there had been further decline. We as a family started talking about removing her from the ventilator, only to find out there was no supporting documentation in her chart by the doctors. Apparently what they were finally saying to us and to the nurses was not what they were documenting. So, again one by one we had conversations with each doctor about her condition and the reality of needing to let her go. By Sunday night we were talking about taking her off the ventilator Monday.
Monday came and there were faith-based hoops to jump through to get the approval to take her off the ventilator. This was the first time we spoke with anyone from palliative care and I only remember it being one brief conversation. Her doctor returned from out of town and was surprised that she had not recovered. He made his first call to her oncologist who said, “Sometimes patients respond to chemo like this. Give her steroids.” This was an emotionally devastating blow because she had been in multi-system organ failure for days now. Her cardiologist said she would likely not wake up and would need long term care placement if she did recover.
I mean it when I say my mother would rather be dead than be institutionalized living on a ventilator.
Thing 2 I’d change. I would’ve called her oncologist myself the first day she was admitted. She kept saying that she felt fine after chemo but then a day later she didn’t. I wrongly assumed that the medical team INCLUDED the oncologist. I do believe this one thing could’ve changed her outcome.
By Monday afternoon we had everything in place. I was prepared to let her go that afternoon and then I was told that it would be another day. My father wanted to wait until Tuesday.
I lost it.
I have never sobbed so hard, either before or since, as I did then. It was all so exhausting and now to make my mother suffer another day seemed cruel. I just kept yelling, ‘she deserves better than this.’ I understand – now, outside my own grief – that he needed a day to prepare. He had not been able to grasp reality days before as I had been. I had been fighting for days to end her suffering, while he’d been fighting to keep her here.
Tuesday morning came with yet another blow. My mother’s case now needed to be sent to the Ethics committee for approval to remove her from the vent. Why at each turn there was another hurdle someone didn’t foresee I did not understand. It was a Catholic hospital and they didn’t explain in advance the protocol to remove the tubes once in place. I was livid and unable to get face time with the bureaucrats causing my anger.
Tuesday afternoon the tubes were removed. My sister, my father and I were around her bed with our hands on some part of her when she exhaled for the last time, some 45 minutes after the machine was turned off.
I Did The Best I Could
Thing 3 I’d change. Her transition was sterile and un-ceremonial. Aside from the blanket I’d bought her for Christmas and gave her early, there were no personal effects. Nothing of my mother was in her death. I’d have music playing. She loved music. Johnny Mathis maybe or Ann Murray. Maybe Johnny Cash. Or maybe some Boots Randolph. I would’ve brought crystals to surround her. Anointing oils to bless her journey and thank her body for its service. I would’ve chosen a poem or a prayer to recite with all of her family present, not just the three of us.
Thing 4 I’d change, though not necessarily in order of importance…I’d take pictures of her in the hospital. Especially before the ventilator. She would’ve hated it though – no make up, hair unkempt, face mask pressed into her cheeks. As it is though I don’t know when the last picture of my mother was taken.
Despite these things I’d change, I know I did my best, but I still don’t feel it was good enough. We all did the very best we could within a system fraught with death denial. My energy had been used up on decoding the things that weren’t being said, forcing them into the air where my family could pluck them at their ready, then begging for the right things to be done.
This is why thing 5 I’d change, not in order of priority, is hiring a death doula (or better yet I wish the hospital had this service.) This one change would’ve made all the other changes for me. A Death Doula, a Transitions Doula, an End of Life Doula, an End of Life Specialist, a Sacred Attendant…whatever name they go by they offer the same thing – holding dedicated sacred space specific to the transition of loss and supporting the best death possible.
(Continued in Part Two- A Daughter’s Hope)