Now waiting for approval of the plan was not necessarily a bad thing. Katie was scheduled to go through a complicated “tendon release” procedure to try to straighten and relax her contracted limbs. It would not be feasible to care for her at home during this time.
Sam had to have Katie transported to a larger city, about 2 hours away, to receive the treatment–which was not available locally, even at the teaching hospital in our area. Over a period of several weeks, Katie’s limbs were stretched and casted a number of times in preparation for tendon release surgery.
The procedure resulted in escalating pain, which was especially difficult during transportation to and from the treatment facility. Because Katie began to cry out continually, her narcotic medications were increased.
On September 12th, while I was away on a trip to visit my daughter’s family and while Sam was away on a long-planned and much-needed fishing getaway, I received an e-mail from Katie’s care manager from the Area Agency on Aging. The care plan had been approved!
Sam was not checking his e-mail, and I decided not to try to phone him while he was on his trip. After a few anxious days, I was finally able to talk to Sam. But my good news was tempered by his disturbing news. When Sam went to visit Katie upon returning from his trip, he was unable to awaken her—she was unresponsive.
And, tendon release surgery was scheduled for the following week…
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…