Heart Wrenching

 Years ago I had a patient who worked at our local call center.  She'd have been deemed "high maintenance."  I also took care of both her parents.  Her mom was frail and chronically ill.  Her father struggling to take care of his wife and not strong himself.  My patient, LM, struggling to take care of them both.  She was under-employed in the call center due to some of her own chronic health conditions.  Trained as a musician and an artist if I remember correctly. 

LM also has a son with multiple mental health and physical health struggles; she worked likely hundreds of hours to get him support and diagnoses and treatment and benefits and housing and assistance and support in college in his computer science endeavors.

The reason she took so much time was because she'd message me almost daily regarding a detailed question about hers or her mother's care.  At that time I did not yet have her son in my patient panel and heard of him only through her. 

She had few friends--some acquaintances through work mostly.   Smart and curious traits buried under her anxiety and care-giver stress. I tried to be a bright spot for her; I've learned, though, one can only do so much--I can't change her circumstances.  I'd say we became friends of a sort.  In touch often about her life struggles and trying to come up with plans for managing them.  

Eventually, she asked if I'd mind being doctor for her son also.  I knew he'd need extra sorting out and time to get to know and help, and agreed to start seeing him.  

He was so nervous the first time he came in with her, a very large young man, struggling to speak or make eye contact.  Difficult to get to smile as his discomfort ebbed into every crack in the exam room.  LM tried to let him speak when I asked him questions.  He struggled.  His medical history would take me months to unravel, I realized so I tried to focus on the most immediate concerns.  We did make some small progress I think. I felt mostly like I was just trying to help him keep his head above the sea of his anxiety and disordered eating.  I did what I always did at that point in my career and came up with ambitious treatment plans involving layers of mental health support, group support, specialists, medication trials and frequent visits with me.  It didn't work.  We just struggled on and tried to not make things worse.  

LM and I had some similar health struggles, such as hands that got cold and stiff, sometimes making it hard to open jars, bottles, or manage daily tasks well.  One day she reached into her purse and pulled out a red silicone flat-topped cone, "For help with opening jars."  I thanked her and we returned to the tasks at hand.  She became progressively more drained and exhausted and I encouraged her multiple times to let me pull her out of work on disability and to try to focus at least a little on her own health, reminding her that she could not take care of others if she was not well herself.  She always shook her head, "I can't." I think a sense of commitment and duty and seeing work as the only time away from the stressors of home kept her going in day after day. 

Her mom continued to fail and became bed-bound for the most part, close to hospice care.  The messages about her care between LM and I escalated to multiple times daily, feeling burdensome to me at times as I tried to squeeze brief replies into the seconds between the in person patient visits.   

I was in with another patient when my medical assistant knocked on the door and asked me to step into the hallway, "The police are on the phone wanting to know if you'll sign the death certificate for LM."  "You mean her mom, right?" "No, L."  Time froze. Denial set in. Stunned disbelief.  "Will you sign it?"  "Yes. Yes." I would need to process later I knew since the patient in the room behind me needed care.  I had seconds to get myself into a place where I could focus on that person through the fog of realizing she was gone.  Compartmentalization is survival for health care workers.  

I still miss her.  She didn't have any sort of service since she was the most functional in her family, spending all her spare time trying to keep them going.  No one else could manage to plan anything.  

(JM struggles, taking care of him, agoraphobia, trans leanings, OCD struggles, eating disorders, sobbing on the phone yesterday embarrassed to tell me his fears and new developments in his health.)