Easier said than done…I’ve got concerns.
Judene and I have picked up our visiting schedule. Sam still feels that Katie requires two person assist—not only for transfers with the Hoyer lift, but also for repositioning and changing diapers and clothes. So we’ve been helping out when he goes to work.
And indeed, Katie is a handful when providing personal care.
Gloria gets frustrated when Katie cries out because of course she doesn’t want to hurt her. But really, it’s impossible not to. I stressed to Katie that she has made good strides (because she cries out much less often) but that she needs to continue to work on it. I stressed to Gloria that she needs to try to disregard the “OW OW OW’s.” She is, after all, doing the best she can do.
I asked Gloria if Katie was the most physically challenging client she has ever worked with. She replied that she had worked with another individual with like-disabilities, but that there was always someone in the home to help her with the heavy lifting. As I said previously, Sam needs the freedom to come and go without having to constantly make arrangements, and that the success of this plan rests on the caregiver’s ability to work independently. So at this point, I continue to:
Each time Judene and I visit, we try to be optimistic, but too often we leave feeling discouraged, generally for one of three reasons: Will Katie be unresponsive? Will she be crying out in pain? Will she show any discernible emotion? All are difficult to understand—mysteries buried deep in Katie’s brain.
Indeed, our visit last week was really good. Katie was alert. She no longer has to wear her braces during the day. She did not cry out at all, and for the two brief moments that she did experience some pain, she said, “Ow, ow, ow,” QUIETLY.
Three steps forward for sure!
Katie came through the tendon release surgery successfully, returning to the nursing home two days later. Both her left ankle and right leg remained in casts. She continued to be significantly impacted by her pain medications, and now residual anesthesia played into the mix.
When Judene and I visited the following week, we were able to determine that Katie was aware that we were there and knew who we were. But then we left the room for a while when the aides came in to get Katie up and dressed. When we came back in she was sitting in her wheelchair—eyes wide open with makeup applied—and totally devoid of expression. The experience was surreal.
The treatment regimen seemed to have set her back so much. Katie’s emerging personality was all locked up again behind an emotionless “flat affect.”
Finding the balance between minimizing pain and achieving alertness is difficult. Katie no longer has the filters to cope with pain that she had before her brain surgery. But seeing her take so many steps back into an almost “coma-like” state was both disconcerting and disheartening.
But then, I came across the following quote in another blog:
“An optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s more like a CHA-CHA. – I like that! So I just have to dance a little before I can go on. Fine.” By Robert Brault
Sounds like our Katie!
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…