That question was from an audience member following a performance of My Stroke of Luck at The Marsh, San Francisco. (I'm dedicating this and the next bunch of newsletters to audience questions.) "Shouldn't they have sent you to rehab?" I could only smile.
I know how outrageous it seems: discharge a woman who cannot communicate, who struggles to walk with a cane, "to home", with no assistance, and no plan, when that home houses 12 and 14-year-old sons, who await the return off their single mother, the tent pole to life as they know it.
But on the flipside, I know medicine: the practice, the guidelines, the contingencies, the realities, the personnel, the mindsets, the protocols, the cracks.
And in my case, those realities clashed in a way that served neither me nor my children. In medical parlance, a system fail. In reality, not so far from par for the course and likely meeting the standard of care And I'm not being critical or negative, just stating the facts.
Some of you, particularly if you've been a caretakers of elderly parents, or of a loved one with serious medical or cognitive issues, may be very familiar with the term: Activities of Daily Living. That is the scale used to determine the level of help or assistance a particular person or patient might need. (Going to go didactic here, because it's really the only way to communicate this concept.)
"The term "activities of daily living," or ADLs, refers to the basic tasks of everyday life, such as eating, bathing, dressing, toileting, and transferring. When people are unable to perform these activities, they need help in order to cope, either from other human beings or mechanical devices or both."
Read that again if you need to. Then again.
"Basic tasks of everyday life" : "eating, bathing, toileting and transferring." Yup! That's the medical criteria for independence (parents, yes, please don't groan: I know that describes the average 2 year old!!!).
Now picture yourself in your daily routine, from wake up to bed time. Then focus in on the four basics above. Those are things you probably do without thinking. Totally NOT the things that make you. Likely NOT the things that make you special to your spouse, significant other, children, parents, grands, friends, neighbors and colleagues (yes, that's a series of outwardly moving circles of intimacy). Likely you're thinking, "If that's what I'm reduced to...." But I digress....
Now, let me ask you to imagine you're a hospital discharge planner. Today you have what, 6 - or is it 16 - people to place in your 8 hour shift? Thankfully, transfers to other hospitals are someone else's job. Shuffle through the pile, skim the discharge summaries. More than half need nursing home placements. But yesterday you struck out, every skilled nursing facility in the region was full. If you're in luck, maybe enough died overnight that some beds are now open, and today, you can place some. A few need acute rehab placements; that should be smooth, plenty of openings yesterday for both physical and cognitive problems. Oh! And this one: a middle-aged female, a doctor, stroke, out of it when she was admitted, so no social history (info on family and living situation, gleaned from admission interview), no family or social data in the hospital chart (never before hospitalized), record lists next of kin, a Logan, relationship, son. A note indicates someone informed him of hospitalization (he had deep voice, maybe you know that, maybe you don't), he said "nothing contributory". If she had kids in her 20's, he would be in his 30's, she likely has resources. Chart says, "Stable. Ready for discharge. ADL's intact." YES! Thank goodness, this one doesn't need help. Arrange a ride. Next.
So, yes, I found the question funny. Gallows humor? Medical humor? Are they that much different?
Yes, I was seriously messed up. But inability to communicate effectively just isn't in the ADL criteria for requiring help. With our medical model of disease and recovery, even with the best comprehensive, prepaid, healthcare (the way it should be for all of us), my impairments did not qualify me for assistance. I was deemed safe to discharge to home.
But also understand, a brain injury patient may, at first, be in no position to benefit from intensive rehab services. The injured brain may require so much sleep, up to 20 hours out of every 24, that survival is the only imperative. So I did what I needed to do: sleep.
Let me make it very clear, my primary care doctor, an internist, who had no way to know what had happened to me or my current status, other than getting a copy of the discharge summary, was very thoughtful, deliberate, compassionate, caring and proactive in her outreach to me after I was home. She called and said, "Don't even try to talk. I'll take care of everything." She attanged the occupational therapist home visit and other services I recieved, maybe 4-6 weeks in (my memory of that time remains foggy).
Then, somewhere in the fog, Stephen Weiss, M.D., the Angel in My Stroke of Luck, who had himself had recovered from a brain injury, arrived, at just the right moment, with just the right advice, admonitions, support and contacts. I followed the map he outlined to find my saviors and my salvation! (With eternal gratitude, Stephen! XOXO, Hugs, and again, apologies for not calling you out with gratitude when you attended the show!)
It was not until well into run of my show, with invited talkback guest speaker, Richard L. Delmonico PhD., Neuropsychologist, NCAL Kaiser Permanente Rehabilitation Lead, that I got a different perspective.
"Your rehabilitation would have been very different if you had had a Physical Medicine specialist. They specialize in rehabilitation, and would have been more proactive in coordinating the comprehensive rehabilitation you required. We are trying to get the message out that everyone with brain injury needs a Physical Medicine specialist. Internists and others do their best to patch together services, but...."
Of course, my stroke was 12 years ago, a galaxy away from today in terms of advances in our knowledge and understanding of brain function, cognition, injury and recovery, staffing and medical models. So I am heartened to believe that if the same thing were to happen to me today, the resources offered me would be vastly different... But at the time, as I've said, my care likely met the standard.
But still, so many issues and lessons from my case, including the vulnerability of a single parent household and the need for a village. People may fall through the cracks in the system, but my case highlights the importance of reaching out to the impaired, of offering help to someone in no position to ask for it, and of patient advocacy.
Though affecting more people than breast cancer, Hiv/Aids, multiple sclerosis and spinal cord injury combined, brain injury is a relatively hidden disorder. And my impairments were likely relatively invisible to all but my children. Many people have apologized for failing me. But they didn't. They didn't know, and I was incapable of letting them know. Then I was so concerned with getting back to work, I couldn't lead with my vulnerability.
But the next time you hear someone you know has had a stroke, or concussion, or chemo brain, ask youself, is there something I can offer to help fill their likely unspoken needs?