Update on Jennifer

From time to time I've mentioned my wife's recent struggle with cognitive difficulties. From her sudden onset of catatonia 14 months ago, she's gone through seven extended hospitalizations, evaluations by more than 20 doctors at 6 different hospitals, and more than 20 different drug regimens. No one has been able to agree on a diagnosis, and none of the drugs have helped. We transferred her to a memory care facility this summer, since she needed more care and support than I could provide at home.
 

Jennifer has been in the hospital for more than two months. She had become increasingly unstable while living at the memory care facility, and her doctor wanted to adjust her medications while under observation. She also had another round of scans and tests as a team of doctors tried to arrive at a diagnosis. The only thing that everyone agrees upon is catatonia. But everything else about her condition is atypical and defies a diagnosis of dementia or depression or any other label. Her doctors now theorize that in September or early October 2017 she had some kind of infection – perhaps a virus of some sort – that caused some permanent changes in her brain chemistry and electrical structure. For the past two months her doctors have tried multiple drug therapies, none of which have worked. The doctors now believe that her recovery is unlikely, and that she likely will require assistance for the rest of her life.

On Sunday I had a conference call with my four children to discuss their mom’s poor prognosis, and make some decisions about her future care. We arrived at a consensus to look for ways that Jennifer could be discharged from the hospital, receive the appropriate level of care, and be given the opportunities to find joy in life however she can. Over the past couple of days I’ve spoken with multiple people to determine if we can arrange 24/7 one-to-one support by aides and techs at an appropriate facility. It’s been a dizzying education on the limits and gaps in our health care system in caring for people with cognitive difficulties. I'm applying all of the lessons I've learned from my cancer journey to advocate on my wife's behalf. Please keep Jennifer in your prayers – she (and I) need all the help we can get.