"Mandy's gone, she left a note but didn't say where she was going - it sounds like a suicide note..."
I was sitting outside a restaurant on the way back to Maryland after a week’s vacation at Myrtle Beach with my wife and two daughters when I received the call. The panicked update came from my other sister, who was closer to me in age but still 8 years my senior. For the rest of the 12-hour drive home my mind raced, and my heart pounded. This kind of call and the anxiety and stress that came with it became a regular occurrence in my life over the next decade.
I had the demands of being a senior Army Officer and my wife had her career, add to it two kids in school and sports - our plates were already overflowing. But she was my sister, and I knew I was her only chance. Mandy was divorced and estranged from her only child, living in Boston at the time. Our other sister was closer, but still over 3 hours away. There was nobody local to help.
"I can neither confirm nor deny if that person is admitted at this facility..."
It took a couple days of calls to friends and relatives, then eventually nurses, social workers, and administrators to find her at the hospital. HIPAA was new then and I was frustrated at this wall I kept hitting and to make it worse the staff couldn’t seem to explain to me why they couldn’t tell me more. Finally, I reached a social worker who’s generic “I can neither confirm nor deny if that person is admitted at this facility” was followed with “but if I were you, I would come up here and check”.
After two trips to Massachusetts and countless phone calls Mandy was discharged and came to live with my family in Maryland. She had survived a heart attack, breast cancer, and diabetes, and to further complicate things she had bipolar disorder. I tried to educate myself about her conditions, make it to doctor's appointments, and ensure all the questions got answered. I was exhausted.
Eventually, she settled into her new life. She moved twenty minutes down the road and started teaching art classes again – things felt stable, fragile, but stable.
Then, she reconnected with a college sweetheart and announced she was moving to Florida. I wanted her to be happy but warned her "I can't help you in Florida the way I can here." The next couple of years went by and Mandy remarried. Her husband had medical issues of his own and their marriage was rocky. I would listen closely to her mood and tone during our phone calls and email exchanges; I became adept at anticipating the alternating cycles of depression and mania. For a while, I could manage things from a distance – negotiating on the phone with medical providers, community resources, and eventually the Department of Children and Families. These faceless strangers on the phone were for the most part caring professionals, but it was evident that this was a brief transaction focused only on solving the crisis of the day. And inevitably, as her husband's health failed, I found myself on a plane again.
Mandy had a hard time managing her medication. There were a lot of pills that seemed to change at every doctor’s visit. She had cognitive issues from previous chemo and electroconvulsive therapy. Whenever she would stop taking her psychiatric medications things would spiral downwards rapidly. Sometimes, I could see it coming and could get on a plane in time to intervene, but other times I got calls from "locked wards" at the various hospitals and psychiatric facilities she had been committed to in the Tampa area.
Each trip was longer and more stressful; it took time to get her stabilized on new medications, released, back home, and reconnected to her local support system. I learned to introduce myself to her neighbors and tell them to call me if they were ever worried and I kept a list of her ever-changing doctors, therapists, and social workers. After getting things set up, I’d go home with my fingers crossed that this time it would last for more than a few months. When she went silent, I would at least have a place to start.
"...she had been discharged a few hours prior; she had been put in a cab and sent home."
My final trip to Florida for Mandy came after the neighbor I had asked to check on her knocked on her door with no answer, which led me to call the local police to do a welfare check. That call brought Mandy to her final psychiatric ward stay. When the facility was ready to discharge her, they let me know the day before. At the time I happened to be in Gainesville for the birth of my first grandchild. I tried to call the social worker that morning to let her know I was on the way but couldn’t get through. When I finally reached someone, I was told she had been discharged a few hours prior; she had been put in a cab and sent home. I changed course and headed to her house, where to my relief I found her.
At this point Mandy and her son had reconnected, and the decision was made to move her to an assisted living near him in North Carolina. She moved begrudgingly and with considerable protest, but I think she knew it was the only choice. Mandy passed away a couple years after that. Those last years were still tumultuous, but the bulk of the burden had moved from me to her son.
I don't recall Care Managers being a thing back in the 1990s when I started on the journey with my sister. The closest thing I can think of are social workers who were there for the singular event, not the long haul. I wish at the time I had an objective medical professional who knew their way around the healthcare and social services systems; someone who understood the diagnoses and medications. Someone who could have physically checked in with her to make sure she was ok and taking her regular medications. Or even a care manager to be the buffer for those tough conversations - so that I could focus on being Mandy’s brother, instead of just keeping her alive. I don't know if it would have enabled her to live longer, but I'm confident it would have helped her live better.