Happy Valenshearts Day Mom. A month later. An overdue post.

It wasn’t a dark and stormy night. It was calm, quiet, with stars. I haven’t quite known how to begin but I wanted to write about Mom’s death. It was a month ago today. I think appropriate for Valentine’s Day. Mom always called it Valenshearts Day. She always had the table set with little presents at the table. She always sent cards.

My last blog post was written in the middle of the night of Mom’s stroke as I tried to keep Mom’s one agitated and working left arm distracted. With my hands, my engagement ring. As the night went on, Dad fell asleep on the sleeper couch in the room. All room’s should have sleeper couches for guests. Easy to clean with good cleaning products, simple to use and surprisingly comfortable. No good spaces for bed bugs. (These are the kinds of things that ID people who served as Peace Corps Volunteers or Motel guests– think about).

By the morning, Mom’s medical team came by for morning rounds. Formal ICU rounds occur daily when the teams in teaching hospitals talk through the patients’ medical issues, often that team includes respiratory care, nutrition, pharmacy, case management, therapy, nursing and the doctors/APP (advanced practice providers). The attending, Dr. S (both board certified in neuro and critical care medicine) introduced herself and then shared that this was her first day on rotation in the ICU with this team, that she was going to let the team do their thing, and then she would invite our active participation.

The RN talked about mom’s last CT, the medicine that they gave in the ED to reverse the blood thinner that she was on (Xarelto) and her BP overnight. That she was fairly stable.

The Resident then presented Mom (present is the word we use when someone is explaining a patient “this is a 78 year old woman who presented to the ED with right sided facial droop, flaccid upper and lower right extremities and garbled speech”) to Dr S. He  mentioned that we (the family) were fine with placing a feeding tube if needed (my eyebrows went up)and mentioned that the most likely reason for mom’s stroke was uncontrolled blood pressure (more eye brows because my facial expressions were literally and metaphorically masked.) 

It was then my turn. First of all- no. No one, including Mom, wanted a feeding tube. No one had even asked us about it yet. I gently shared with Mom’s doctor that if there was some scenario where a brief feeding tube had value we would consider it but not as a permanent option. And with mom’s agitation and Alzheimers, and the fact that she had gotten out of an inflated BP cuff that previous evening, despite a stroke and only one working arm. I didn’t see how we would even keep a feeding tube/NG/keo in place even if it was appropriate.

Dr. S shared that it wasn’t appropriate, was not indicated, I think relieved that she didn’t have to explain to Dad and I why it wouldn’t help this big picture. 

At this point, I shared that I was hoping to get Mom home with hospice, unless they saw some possible way to miraculously  improve things- that Mom had lost the use of her right side that her swallow and speech were gone; and there was complete agreement within the team. At the moment, the thinking was she might last a few weeks. I was trying to figure out what to tell my sister and brother. As we spoke in the hallway outside of Mom’s room about what a dying timeline might look like, they prepped her for another CT scan and wheeled her out. Their process/stroke protocol was to repeat scans every so many hours until there was no change, no further active bleeding. Dr S. stated that there wouldn’t be a need to continue to scan mom if our goals were for comfort but as she was already in route, this was to be her last one. 

The consult to the social worker with hospice was placed and we waited. Mom came back and was again more lethargic, tired. We let her sleep. Rather quickly Dr S. returned. That CT that was Mom’s last one, the one that they didn’t really expect to show anything was worse, there was blood in her ventricles now, some midline shift. That timeline of a few weeks was more likely going to be a week at most. I texted Lolly and Jay and told them to come home.

The rest of that day was about logistics; Dad went home at one point to sleep; my husband, Johannes, came in that evening with Oskar and Topher.

Mom woke up that evening. I will never forget the joy in her eyes when the boys came. She kept grabbing their hands with that left hand and bringing their hands to her lips for kisses. She couldn’t speak; but she looked at me and I knew that she was saying, “this.” “This is all that I want.” (And to be clear, by this- I mean all 5 of her grandchildren.) And I was filled with such sadness, such emotion for the hole that was about to be in all of our hearts. I had to leave the room and sob in the hallway. Really loud sobs.

Eventually we said our goodbyes and left mom to amazing nursing care. They were repositioning her, changing her, caring for her, talking to her. Such gentle respect, such love. The 8th floor Neuro ICU nurses and stroke team have my heart.

At 4:00 AM I awoke to a migraine. Not surprising; but I couldn't get my meds in quickly and I ended up vomiting. “I had to put my airpods on, it was so loud Mom.” was Topher’s recollection later.

My brother Jay arrived from the airport, my husband grabbed him and brought him to UPMC Mercy and then as I tried to medicate and sleep off the tail end of my headache, Dad and Jay brought mom home to their house.

They placed her in the hospital bed, to the right to the right of their bed, by the window in their room. Stuffed cats and bunnies, real cats. There was lots of natural light. That first day after transport, mom slept at home much of the day. That evening our first hospice assessment, orders for medications and some equipment. The meds arrived by nightfall. 

But Lolly and I were rolling and changing Mom at home, we repositioned her. I look back and thank every nurse (St. Margaret, Shadyside and Passavant teams?- I mean you) who ever taught me how to assist them with a patient when rolling, positioning or doing a dressing change. Prepping by rolling the chucks (blue bed pads that you place under the patient on top of the sheet for absorption but also coordinated movement) into a sheet; basin bathing, log rolling my patients… the more I worked with the nurses who cared for my patients, the more I learned. Mom benefitted from their love. They have mine.

That first night, Lolly and I decided that Dad needed to sleep and we sent him up to another room, Jay was crazily jet lagged and we sent him off to bed as well. Lol and I figured that we could share Mom and Dad’s bed – Mom has always slept well through the night so then we would be right there if she needed anything.

Her left hand was ridiculous. Before we truly recognized it as the sole marker that we could interpret for her agitation (recall my post about her Sundowning? It is a term used with the agitation and restlessness that comes into the evening and night. Times where dementia patients lose some of their masking powers, when their brains show more of the confusion– a window into their inner workings.) Lolly and I couldn’t sleep— trying to interpret what mom was trying to do with her arm, explaining time and time again that she had had a stroke, she couldn’t speak, also had Alzheimers and her short term memory wasn’t saving all of the details. At some point we both fell asleep and then again, I woke with a migraine and went to grab my meds and looked over to see mom- moving, agitated. Ileostomy bag off, sheets a mess, stool on night gown. Somehow having escaped from Lolly’s loving hold on her left arm, Lol sitting asleep in a chair next to Mom, head on a pillow on Mom’s bed.

So as the sun rose we were again log rolling mom, cleaning and bathing her, Lolly holding her head so gently. This was our next few days.  Some of the details start to get hazy because we were sleep deprived. Some were exchanges of dark humor. Some were brutal moments of loss. Some were the difficulties in Mom’s eyes, unable to use her words when we would again tell her that she had a stroke and tears would well up in the corners of her eyes. The Promedica hospice nurse and aid were simply amazing. The love, the listening, the advising. The visit from Clergy who spent an hour in the basement talking to dad. The back rubs that Denise gave Mom were precious to witness. 

There were also noises, loud breaths that Lolly was able to explain to my Dad as I struggled with words while we were all holding Mom at the end. They were a few sounds of a bellow. That old fashioned tool used to stoke a fire that when squeezed together quickly makes a loud noise as the air rushes out of the small tube at the exact same time. The mechanical engineering term and the instrument description don’t use the word suffering in their definition. It is the dictionary that uses the word bellows in reference to noises of agony or anger. But I knew that these noises were not struggles for mom, simply mechanical physics— a brainstem trying to get as much oxygen in and more importantly carbon dioxide OUT of her lungs to fix the dying process. Our brain stems will continue to try to preserve an ideal chemistry and function until the organs can no longer do the work. I might be the clinician but that medical to non-medical metaphor came from Lolly, from the English teacher that Mom raised. And bellows Dad knew. Because in love- you want no one to suffer. I didn’t want Dad to suffer worrying about Mom suffering and Lolly didn’t want me to suffer worrying about Dad suffering. The words were hers.

There is absolutely no question in my mind that those who claim to follow Jesus’s example need to spend time in the space that is metaphoric foot washing. It is the image that I hold onto as an example in medicine. The metaphor of the foot, the pillar of the body, not the prettiest part, often the smelliest part. Mom’s hospice aid had such Faith that she was called to serve in this way. To honor Mom. To wash her. To rub her. The care and love was so thick. I spend a LOT of time with feet in infectious diseases– and I constantly remind myself that this is the way to honor life. To me it isn’t because God instructed it but because whether life is random or planned, that it is amazing and beautiful and all of it is worthy of being honored. Even the smelly and ugly parts. 

Especially the dying.

Mom was honored. 

It was hard. 

We shared an invitation to some of her friends to come and be present. It was amazing to watch those who were so comfortable in the space next to mom. Physically opening up their body positioning in that chair next to her to welcome her into their circle of chairs. Holding Mom’s hand. At times whispering to her, hosting her in the circle of friends around her. You quickly realize that there are persons who were gifted with the talent of welcoming the dying into the circle of life- their comfort in both spaces allows the dying to be present– it doesn’t rush the dying out of the space. These people are such lights. And it is in no way a criticism of those who are not naturals in this space, But rather than flee from death (common in the culture of the US), I believe that  if we can raise more children to find comfort and strengths here- we will honor more dying loved ones. And set better examples. We will have less dying in hospitals surrounded by staff who only wish that they were loved ones. 

Mom was loved.

And so were we. The food, the  chicken salads and green gem smoothies from Curbside, the flowers, Community Center and Feast on Brilliant dinners, the bottle of Jack Daniels, the songs shared. Someone posted my blog one day. Made cards for Mom’s memorial. The guests who just showed up. The friends who swooped in and planned the logistics of her Memorial. Assembled photos. Flew in. Our community simply rocked. Everyone should have amazing death space sherpas.

And then she was gone. 

And we work on what to do in this space. And we are not alone. Nor was our loss tragic. But Loss is Loss is Loss is Loss. There isn’t worthier loss, or less worthy grief. There isn't better natural death. No one is winning an Oscar for a real death.  I have been in this space too long to think that any of that exists. There is love and there is loss. I wouldn’t give up love for protection from loss. 

Happy Valenshearts Day to you and your Loves. May there be many.