“How are you?”: A lengthy response to a short question.
I am sitting quietly in my mother’s hospital room; she is in the bed next to me, hopefully sleeping. Her soft moans have subsided and I hope that she has drifted off to rest. I am in the reclining lounge chair with my view out over the sky, over three flower arrangements that arrived but have only been watered by me. Since my mother is both a wander risk and a fall risk at this time, we are close to the nurses’ station. The upside of this is the proximity to their talent and the downside is the noise and traffic. As of yet, there are no patients yelling for help (we always go when help is yelled, but many confused and demented patients don’t know what they need and the yell is possibly their way of being present, their tether to this world. It can make for long nights). I imagine that someday it could and will be my mother.
She came into the ED less than a week ago with some vague abdominal pain, fever and overall feeling not well. She carries a diagnosis of Alzheimer’s dementia but what that specifically is and means for her, we don’t know. Many times those around her are not even aware of her issues; certainly as a wise friend shared once– people show up for diagnosis of cancer and surgeries but degenerative neurologic disease really gets whispers. She isn’t easy to love at times for her family nor easy to care for. Her masking of her confusion is PhD level stuff– distract, act offended, redirect with anger, accuse and insult. But in her space at home and her well-known places, she does well. So, while we all knew that she has been masking well, I didn’t know how well. I did NOT anticipate my mother as a condition M. (I call them Condition Madness, but that is not what they are- simply my term).
Sleeping in a recliner next to a woman who has a vac dressing, an ileostomy and is encouraged to drink a lot to replace the volume being lost as a result of the ileostomy and therefore has to frequently use the bathroom, is not easy. And, It hasn’t looked like sleep any of the times that I have attempted it.
When she was in the ED last week, I personally examined her abdomen. It was soft with some mild suprapubic (pubic bone area) tenderness. Reports of soaking sweats and some chills led me to assume fevers. I suspected that she might have a uti, mild cystitis, a urinary tract infection. And I spend much of my work days explaining that it isn’t a UTI. (See Beaver Dam Post). Mom wasn’t obstructed, had no history of stones and denied any burning with urination. And yet given her soft belly with good bowel sounds and lack of other GI symptoms, my bet was simple cystitis. But her urinalysis was beautiful, no nitrates, no leukocyte esterase. None of the things that we look for to suggest that there could be an infection. Her while count was mildly elevated but nothing alarming and the rest of her labs were completely normal. Off she went for CT. She came back, angry, telling me of everyone’s gross incompetence and we sat in that energy for 20 minutes.
Then the surgeon walked in. He looked at me, wondering why ID was in the room before he had gotten there; I looked at him and asked simply “what did you see in the scan?” . I was busy seeing patients. I told the surgeon that his patient was my mom, and he told me that there was free air on the scan, there was an abscess (pocket of pus) adjacent to significant diverticulitis –ITIS (Latin for inflammation) of the diverticulum- severe inflammation in the outpouchings of the large intestine with perforation/hole. After speaking to our interventional radiology team who didn’t feel that they could drain the collection from the outside (drain through skin into bowel collection) she was scheduled for the OR that night.
The surgery was 4 hours. Anesthesia worried about the effects of the meds on her brain given the history of Alzheimer’s. I would plan to stay overnight that night. She came out of the surgery well, with an open incision (partially) given the infection to allow things to drain and heal from the inside out, and an ileostomy, a bag.
Why? Well with diseased perforated bowels leaking into the surrounding tissue, the goal was to remove the diseased bowel and hook up healthy bowel ends together (called the anastomosis) and ensure it was sealed but then to let it rest for weeks and divert the stool out earlier along the pipeline. Meaning to keep the pipes dry and let the tissue heal and seal itself without the diseased, holey tissue, and get the stool out of the body from the ileum. They do a procedure called a diverting ileostomy– pulling the ileum (largest and last part of the small intestine) out and emptying the stool into a pouch on the abdominal wall and let the large intestine repair and heal; later, they’ll re-hook everything up.
As I rushed from sleeping at bedside two days later- my third overnight, to rounding where my mom was staying to the site of a conference that I was a co- director (late because #Mom), I thought about that same conference the previous year, 2021. I had simply been a lecturer but sat for the lecture before mine given by one of our critical care attending doctors about the pandemic. By the end of this talk about Covid, where we had been and where we are, all of my colleagues were sobbing, quietly, surprised by their emotions. It was the beginning of the realization of our brokenness, our injury, our anger.
How quickly the year had gone. I could measure the time in so many ways but what memories mom had lost were not as easy to categorize. Her masking skill set had gotten so good. Had she been attending her book club a year ago? Had she been able to follow a recipe still then? She had definitely picked out a few Christmas presents last year though she had then confused who they were for and lost a few in her closet for a time.
As the final talk began Friday evening, the keynote– it was on Acceptance and Commitment Therapy with the emphasis towards strategies to enhance psychological flexibility which is defined as the extent to which a person can cope with changes in circumstances and think about tasks and problems in novel, creative ways– Dr. James Tew’s talk was not to present us with solutions, it was another share of an experience. It wasn't “how to fix yourself”; but “how to accept yourself”.
The day after surgery as Mom woke in the afternoon and asked more questions, the memory deficits were apparent. Short term memory had been a problem, but in a new setting it was gone; she couldn’t retain a thing. Dad and I left her (at different times) thinking that she would be ok overnight in a hospital where I worked; where she had recovered before, where my grandfather had died. But the calls began, manic ones from mom. Where was she? What had happened? And finally, one from her nurse knowing that I had said that if anything happens, please call me and I would come in before sedating or restraining mom. She was yelling and pulling out her IVs, trying to get her catheter out. I came back and found a wild eyed woman, terrified with pinpoint pupils. I could feel her fight or flight chemistry response; beads of sweat on her brow and dried blood at her IV site. She had managed to get her ID bracelet off (without scissors, it isn’t easy). Paranoid.
I tried to explain but her narrative was one that I couldn't reach with reason. So we called dad because I was “clearly not trustworthy either”. Dad answered and I shared the news that I was deemed incompetent also and he began listening to her paranoia. She had no idea where she was (train station, NYC) nor what had happened to her. She told him of the woman who kept coming into the room to see her (her RN) and, though I could hear dad calmly telling her the real story, she couldn’t buy in.
It wasn’t until I showed her a piece of paper with her 24 hours update that listed the surgery, surgeon and anesthesiologists names, the list of medications, the lab values that she began to listen. Watching a person use trust (granted she only had a sliver of trust in me) to overpower the truths that her brain chemistry and underlying disease and medications were telling her– was amazing. And then she burst into tears. At which point we got ice chips and watched Friends.
Of course, by the morning she had forgotten all of it. Why did she have a bag? A wound? Who cut her? And we have continued to go over it daily, multiple times. These unmaskings of her brain's defenses give me a window into her world, they are both sad and educational. The losses are random. Some of the paranoia seems better until she is left for a few hours and then I arrive to the room to her big eyes, pinpoint pupils, angry and ungrateful tone. I have to accept her where she is, redirect her without acting out at her fear as anger. This is my work. My mother could be tough at times, but never towards anyone serving or caring for or with her; never anything but gracious even in her pain. Until now.
And so, each call is another accusation, each visit an initial confrontation until a softness shows. A random memory comes out. An insight. And then it goes.
How will we deal with an ileostomy that puts out a liter of fluid a day in a woman who doesn’t have the best balance? Who now needs to drink even more fluids to keep from being dehydrated, but still deals with a bladder functioning like that of most 78 year-old-women who have had children? It is an irritable bladder in an irritable woman. And now, she has a bag that we have to remind her exists multiple times a day. How will she understand the tubes of her vac– her vacuum dressing on the parts of her open wound pulling fluid off and a little soft positive pressure and a sponge dressing attached to a battery containment device to promote healing? How much of this sundowning (what they call the delirium and confusion that happens in the setting of many dementia issues) will improve at home?
How am I? I am fine in the sense that is real and I’ve no other choice. I accept that I am tenuous. I accept that I am tired. I accept that I am not exercising as much as I want. Fine doesn’t have to mean I am not honest about what this dumpster fire looks like; fine can be a vital sign. I am stable. I am aware. I need help and love and support and I am fine.
This is why community and my true friendships and love and faith are important to me. I can sit next to my mother in her hospital bed knowing that we are definitely going to use the bathroom at least 8 more times and I will get very little sleep and know that I will be ok. The 24 hour day. The arrival of siblings. The soup on the porch. The party in the swim shower. The lake escape. The hug from a colleague; the dark humor…. Soooo very dark. I can just be myself and know that it is ok to say I am fine. I will be on this path until I am on the next one.
