Homecoming

Congresswoman Gifford is going home and that is wonderful news. She should go home. Seven months in hospital care is grueling for everyone in her life from the $200 dollar a month TIRR parking tab to the requirement – very important – to “being there” for her recovery. I spent 7 months at Hermann/TIRR and Hermann Hospital at Annie’s bedside and rehabilitation. The daily visits, bringing food (breakfast tacos go a long way with the staff), greeting friends and family, and blogging on the absolutely wonderful Caring Bridge website. I “knew” if I didn’t go I would miss something or Annie wouldn’t get better. But really “getting better” meant it was time to come home. I thought nothing of the warning when her neurologist said, “Be careful what you wish for…”

We didn’t have kids. Our whirlwind work life and associated world travel kept pushing out that decision until we decided it was past the point of starting a family. I can only imagine what it is like the day a 10-pound baby comes home and life changes. I had a 110-pound baby. My friends with kids say, “Well, we had nine months to prepare”. Okay, I’ll cede the point – whatever it might be – that I too might have had time to prepare.

And I did prepare. Several useless ramps and some eventually useful handrails, covered or gated any drop-offs and generally “childproofed” the house. I made arrangements to have a live-in caregiver who would start in 30 days. And of course, I had Annie’s sisters who had been “there” through the whole process. But it still will not prepare you for the maintenance of an adult.

We have some friends who are going through the initial bumps of “end of therapy” beginning of “home responsibility”. They are in outpatient therapy that involves three days a week of going all day to a facility. And they, as a family, are experiencing the challenges of supporting an adult with a brain injury. I learned a new application of a term this last weekend at the National Institute of Health in Washington, DC (way more on this later).

The term was heterogeneous and was being applied to stroke, brain lesions and traumatic brain injury.  Simply put, all brain injuries are different in the way they affect the individual. You may find that a person with a knock to the head is completely incapacitated and someone with an injury as extensive as Annie’s is able to return to a functioning life. No logic to this – our understanding is not complete – it simply is. But that doesn’t make it impossible to determine a system for home support. Apparently some of the old thinking on “you get what you get in 6 months” was based on the survivor leaving therapy and going to their “new” environment. This might be home and family support or long term care. In either case improvement for the brain injury survivor is determined by how much support they get. And guess what? More is not necessarily better. If the family or facility takes up the daily tasks the survivor may adapt and not try to improve. This is tough love time. You want to do the things for that person that they cannot but by doing so you may be impeding their progression.

I’ll be writing up my interpretation of the lessons learned at the NIH last weekend. And possibly this will be more than anyone wants to know. But the doctors, grad students and scientists at the NIH and associated world organizations are doing some fantastic things around brain physiology. I was able to view a tiny piece of it and it has completely changed my thinking. Stand by…