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!
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 and I were born in the same year—1948. The thought of having to spend life in a nursing home, potentially for decades, makes me cringe. Especially for someone like Katie who is vivacious to the point of hyperactivity. She is selfless—always helping others. She has raised a foster child. She has done mission work in Peru and on reservations in the Western United States. She has helped friends and neighbors with cancer. She was a caregiver for her mother and mother-in-law. She provided support to David and me when we were caregivers for my mother-in-law. It’s time to give back.
Because of my professional background, I knew that Katie would qualify for a waiver program. I was familiar with a company that provides a consistent live-in caregiver 24/7 at a cost, that although expensive, is about 25% of what most companies charge. But there were two major challenges.
The first was to convince Sam (Katie’s husband) to have two assessments for services—from the potential provider and from the Area Agency on Aging. But, Sam said, “I just can’t see it.” After many months, I finally resorted to telling Sam I just could not continue to visit Katie so often at the nursing home—it was too difficult seeing her living in that environment while he was resistant to exploring all potential options. I told Katie I had done all that I could do—it was up to her to persuade Sam.
The second challenge was that waivers do not generally provide 24-hour care. The plan hinged on convincing a bureaucratic institution to see the obvious: that it makes sense to provide 24-hour care when the cost is equitable to the 10-hours of care from “approved” providers (as well as cheaper than a nursing home).
I’m unsure of the motivating factor, but in May 2014, Sam decided to move ahead with the assessments. He called the Area Agency on Aging to request an assessment. I called the 24-hour provider, who was available to assess Katie the following week. I then e-mailed the social services director at Aging, who was able to facilitate the agency process. Everything fell into place. The 24-hour provider prepared a care plan that was then ready to present at the agency assessment.
We were informed of a new program called “Services My Way,” which was exactly what was needed to be able to care for Katie successfully in her home. However, the program had not yet been administered in this county. So the assessments were complete—the care plan completed and submitted. It was now time to wait…….
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…
In October 2012, we three couples took another trip to our fall getaway. My mother-in-law had passed away a year-and-a-half previously. I had had bilateral knee replacements and my rehabilitation was complete. David and I were feeling particularly carefree. The second night of our stay, Judene got up in the middle of the night, took a wrong turn on her way to the bathroom, fell down a flight of stairs and broke her wrist. (Thank God it wasn’t her neck!) She called out to Manny, who roused Katie (the nurse) and off they all went to the emergency room. While David I slept unaware of what had happened, Katie took care of the whole situation. The following day, Manny took Judene home so that she could be treated by an orthopedist.
Later in the week, Katie confided to me that she was in the midst of a medical situation of her own. She had been experiencing dizziness and had a scary episode while driving. Tests were run, and it was discovered that Katie had two brain aneurisms. The doctor suggested that they keep a watch on the aneurisms to determine whether they were stable or growing.
But Katie felt like she had a time bomb hanging overhead. A few weeks later she decided to get another opinion from a surgeon at a big research hospital. The surgeon described a relatively new procedure that he had performed 100 times with a 98% success rate. Katie could expect to have the surgery and be home in three days. Katie decided to undergo the procedure telling me, “Without surgery, I could have a stroke.”
I met Katie in the mid- 1990’s’s. At the time, I was teaching in an adult learning center. Some of our students were participating in an adult high school diploma program, and one of their competencies was to become certified in CPR. My husband suggested I ask the wife of his co-worker to teach the class. Katie is a nurse, and always willing to volunteer her time to help others. With her guidance, my students all passed with flying colors.
Shortly after this time, we began to socialize with Katie and her husband, along with another gentleman from the work group and his new wife, Judene. (Both Katie and Judene had caregiving experiences and were contributors to “What to Do about Mama?” These are the fictional names I used for them in the book.) For future reference I will refer to the three couples as: Barb and Dave, Katie and Sam, Judene and Manny.
We three couples would get together for dinner and games. Katie LOVES to play games and can get quite competitive (and so can my Dave, who generally expects to win). On a couple of occasions, Judene threatened to end the game if “the children couldn’t play nicely.”
Katie and Sam owned a time share and got a good deal every fall at a resort four hours south. We rented a townhouse apartment together and had days of fun exploring, hiking, golfing—and of course, dinner and games. Katie was the driving force behind all of this—our own personal activities director.
When my mother-in-law moved in with us, Katie moved into overdrive to make sure David and I got away for vacations. In addition to our fall resort trip, she planned a 2008 trip to New Hampshire, where we rented a bungalow on a peaceful lake. We kayaked and fished, and took a drive to the top of Mt. Washington. The following year she arranged a trip to the Finger Lakes, not only for fishing, but to visit the wineries—a passion of my husband, David.
Katie was the driving force behind these vacations. She knew how much we needed to get a break from our caregiving situation. She knew neither my husband nor I were going to get up the gumption to do this for ourselves. Katie and Judene were always there to listen to me and to give me their love and support. They both understood, because they had both been caregivers.
I will love them always, and I will do whatever I can to give back.
Sadly, the time has come…..