Home sweet home

A couple days ago, when I read about Gabby Giffords leaving TIRR to go home my very first thought was, that is the only way she will get better because this is exactly what happened to me. I was at TIRR for 7 months and although I had 6 -8 hours of rehab every day, it is still a hospital. I remember hearing that you can become "institutionalized."  I didn’t exactly know what that meant at the time, but I do now.

The doctor asked Bob:  "Are you sure you are ready for Annie to come home?" We naively said, unequivocally, “Absolutely”.

In hindsight, I was in no position to know if I was ready or not to go home. I was told it was time. All I knew was I thought I wanted to go home. Bob seemed excited to get me home. He was living at a friend’s home for 7 months and came to see me every day. I didn’t truly understand my limitations until after we arrived and the severity of what we were going to have to overcome. I knew I couldn’t walk, shower, get to bed on my own, get to the bathroom, or prepare any meals. I had difficulty eating due to my medication, e.g. I regurgitated my food at the end of every meal. And my dignity, well I checked that at the door of the hospital and forgot it. It took years before I could reach for it again.

We were completely unprepared for Bob having to take over 100% of what the nurses performed in addition to the physical therapy and I was 100% wheelchair dependent.  I was in the therapy vernacular, maximum assist. We were prisoners in our own home. Couldn’t go out for fear I’d have an accident – bathroom variety – and I did a couple times. I’d fall out of my wheelchair. I was in pain – for reasons we’ve never understood.

Bob had to spend 20 minutes every morning and evening straightening my leg so I cold sleep comfortably.  I was wearing diapers at the time.  It was the only way we knew how to both try and get some sleep. The process of lifting me out of bed to toilet, etc. was too time consuming so we eventually graduated to bedpans after about 6 months. I was 100% dead weight and about put Bob in traction with all the lifting and transferring he did. Thank goodness he is so strong.  When he wasn’t feeding me, changing me, transferring me he was trying to teach me how to walk again.  You might ask at this point:  When did Bob have time for himself? What did he for a release?  Why didn’t he jump off a building?  I truly don’t know how I would have handled this had the situation been reversed.  

Eventually we found physical therapists, caregivers and of course leaned on family. Going home was tough, but it was time and it taught us a lot.