Katie now resides in a nursing home. During the first half of 2013 she had surgery to have her skull reattached, and Botox injections to relax her limbs. Due to the traumatic brain injury (TBI) that caused the stroke, Katie’s left arm is tightly contracted; the left leg has dropped foot; and the right leg has become mysteriously contracted after her skull reattachment. Only her right arm functions normally. Katie has had some physical therapy, but it was discontinued due to her inability to tolerate the pain. Friends were trying to help out by stretching her limbs, but no one could stand to put her through the agony. So physically, there was very minimal improvement, at best.
Mentally, progress was more positive. Her vocabulary was good, and she was able to communicate fairly well. She did have a tendency to “confabulate” (giving fictitious accounts of past events, believing they are true, in order to cover a gap in the memory caused by a medical condition such as a brain injury). That characteristic, in addition to the extreme change in her personality, were possibly the most difficult for family and friends to adjust to.
Judene and I tried to visit Katie every week or two, and we would sometimes have get-togethers as couples for dinner and game night at the nursing home, with the hope that familiar activities would help restore some essence of her personality. And very gradually we began to see some progress—through a smile or a laugh or a demonstration of Katie’s keen wit.
Because I had been an Assessor at the Area Aging on Aging, and because I had experience with developing care plans, I began to talk to Sam about the possibility of caring for Katie at home. I told him that I had seen clients in similar conditions cared for at home. I acknowledged that providing total care is very difficult and a huge responsibility. I understood that Sam was completely over-whelmed by the concept, and basically scared silly by the idea.
But I had a plan—a real longshot—and it became a driving force for me to see if it could work…
A few days before Christmas, Katie had brain surgery—but tragically, she was one of the 2%. The surgeon punctured a blood vessel in her brain, and she did, indeed, suffer a stroke. The following day she had additional surgery—a portion of her skull was removed to relieve the mounting pressure on her brain. Katie survives. She has a tracheotomy and a feeding tube.
A number of weeks later her husband, Sam, told us that it had all sounded so positive. Of course they knew there was a risk of unsuccessful surgery and DYING, but they had just not considered the risk of unsuccessful surgery and LIVING.
Katie was in a coma for several weeks. The doctor recommended that she go to a rehabilitation facility that specialized in stroke and coma therapy. The insurance company denied this course of treatment and she was sent to an acute care facility instead.
When we visited, we would talk to Katie and ask her to squeeze our hand if she could hear and understand us. Often we felt a light squeeze—but we did not know for sure what that meant. During one visit I read the following nurse’s note entered into the journal: “I put a washcloth in the Katie’s hand and told her to wash her face, which she did.” Shortly afterward, Sam arrived and I pointed him to the journal. This was the first real indication that Katie’s mind was able to receive and to process. When Sam read it, he just broke down. His relief was palatable.
Katie began to gradually emerge from her coma. The strangest and most difficult adjustment for family and friends was that Katie, normally vivacious well-beyond the average, now had no expression at all, but a totally flat affect. Her one means of communication, and her only means of expression, was her right arm (much like the story of Christy Brown portrayed by Daniel Day-Lewis in the 1989 movie: My Left Foot.)
Katie received some physical therapy at the facility, but was not able to reach benchmarks. She was then sent to a rehabilitation facility where the cycle repeats itself: Katie emerges slowly; she is unable to meet benchmarks; insurance is discontinued. The next step is to a sub-acute rehabilitation facility—a nursing home.
On December 19, 2012, Katie went to work and spent a busy day with patients at the doctor’s office where she worked. On December 20th, her life changed forever. In May 2013 she turned 65. She resides in a nursing home. With the use of only one of her limbs, she is bedbound, or more accurately…