Saturday, July 21, 2012

Not Knowing, Part 1

One of the things that my dad worried about the most when he was sick and even before then was his mom, who had been living alone in a small town in southern Alabama until the age of 87, when she suffered a stroke.

Kind of like my dad, she lost her independence in the blink of an eye, never to regain it, even though we had hopes that she would, at least to some extent.  Kind of like my dad, she was in very good shape physically and mentally, until her illness struck.  But unlike my dad, in addition to her physical skills, her cognitive abilities also were severely affected as a result of the stroke, and she did not have anyone in her area to take the kind of care of her that was required after that or the resources to have it provided in her home.  And so, as her hospital stay after the stroke was coming to an end, a skilled nursing facility was strongly recommended by the medical staff, and my parents decided to move her to one that was close to their house, one state over from hers.  

The downside was that the move disoriented her more and that, since it wasn't feasible for her friends from her hometown to visit her several hours from her hometown, she ended up being pretty isolated there, at least from people who had been involved in her life as it was before she got sick.  The upside was that my parents were able to check in on her several times a week and to make sure she was getting good care, and the rest of us were able to see her too whenever we were in town.  After the initial landslide loss of function, her memory and her physical status continued to deteriorate, a little at a time.  Eventually she was diagnosed with Alzheimer's Disease and she wasn't even consistent in recognizing those of us she had known for all of our lives, but she always recognized her son, my dad.  

Grandmom's first Christmas in the nursing home

Dad and I discussed many times over the years how tough it was to see Grandmom be so changed, so dependent.  She had always been a bold woman who strived to do things for herself and to do her part in making the world a better place.  All her life, she had lived on a fixed income; she did not have fancy things or take fancy trips, but she was grateful and generous and happy all the same.  Before she got sick, at the beginning of every year, she wrote out a detailed budget for herself for the upcoming year and mailed it to my dad.  The few times I happened to see what she'd written, I was flabbergasted at how specific it was and at my grandmother's frugality, and I was amazed that despite the limits of her finances she still committed to tithing to her church year after year.  She was not what one would call a Southern belle; rather, she was much more of an activist and a liberal-thinker for her time who valued individual rights and freedom for all.  

QUITE THE DAREDEVIL IN YEARS PAST:  With her younger brother Freddie, in Daytona Beach, FL ...

... and riding the bull at Gilley's

When Grandmom first got to the nursing home, she needed supervision around the clock and help with some things, but there were some things about her personality that were still the same.  She had always been a competitive person, and we saw shades of that come out in things she did there too; once when we visited her she told us she was the fastest person on a walker in the whole place.  Another time she proudly informed us that she had won the Bingo game there the day before, and she showed us a ladybug broach that she'd won for proof.  She was always so grateful for visitors, even as she became unclear on exactly who we all were, and she especially lit up whenever she saw my dad.

About a month before Dad was diagnosed with cancer, he and my mom sat down with Grandmom's doctor to discuss her steadily declining condition.  She had become completely dependent on others for everything, including feeding herself, and had been having some trouble with swallowing that seemed to indicate that she had had one or more mini-strokes that were hastening her decline.  Because of the swallowing difficulties, she was at risk for pneumonia and she was also having bouts of depression and anxiety, even though she did not seem to be aware of where she was or what was going on around her most of the time.  The physician recommended that my dad, who held Grandmom's medical power of attorney, enroll his mother in hospice care, which meant that she would continue to be cared for in the nursing home but that she would also be monitored by medical staff from a hospice agency who were specifically trained in end-of-life comfort care.  Wanting the best possible care for his mom, Dad signed the papers with a heavy heart; he'd committed to providing for and to looking after his mom years ago and felt in his heart that this was the best choice for her, as did we.

Worrying about her, her prognosis, and her comfort continued to weigh heavily on my dad in the days ahead; in fact, the last text message I ever got from him, which was just before he was diagnosed, was about his concerns for her.  He said he felt that she was declining so quickly that he didn't think she would survive even one month longer.  He said that he was worried about how "the girls" (meaning my children and my nieces, all of whom had visited Grandmom in the nursing home recently but had not seen her in her present condition) were taking the news of her decline; the whole situation was both difficult and sad for everyone involved.  Dad continued to visit his mom whenever he could, as did my mom; thinking about her was a part of their normal routine. 

Dad last visited him mom in the nursing home the day before he was rushed to the hospital and the mass in his head was discovered.  Suddenly, his own health was unstable and his life was at risk, weirdly and shockingly in some ways even more so than his 90 year-old mother.

In his typical way, though, he continued to worry about his responsibilities (his mom being one of the things topping his list) throughout the course of his illness, despite the fact that he was very sick himself.  During his first hospitalization and his stay at the rehab hospital, my sisters and I stood in for Dad, with at least one of us checking in on Grandmom every few days.  It was something we were glad to do; it felt like helping to take care of her was also helping to take care of him.

The first time we went to see her was the day after Dad's surgery.  My sister Jennifer and I went, while Mom and Nancy stayed at the hospital with Dad.  We were still reeling from having just been given the devastating diagnosis less than 24 hours before, and walking into Grandmom's room in the nursing home with a smile on our faces as if nothing was wrong was tough, to say the least. I couldn't shake the anguish that came from thinking about how much had changed in the six days it had been since Dad had last been there to visit his mom, but I felt in my heart that the news that Dad was so sick that he was unable to visit her would be more than Grandmom could (or should have to) handle at that point.  Neither of us is much of an actress, but, for Grandmom's sake and for Dad's, thankfully Jennifer and I pulled it off, and I was glad we were able to spare her the pain and fear that had taken root in the hearts of the rest of us who did know the truth.

After we told Grandmom goodbye in her room, we went to the nursing station down the hall to talk to the nurse who was taking care of her that day.  My mom had been doing Grandmom's laundry, collecting her dirty clothes weekly and then washing them and returning the clothes to her; however, given what we were faced with dealing with at that point, we decided to tell the staff that we wanted to have the laundry done at the facility until further notice.  "I'm Nellie's granddaughter," I said, "and I need to let you know that my dad is very sick and so neither he nor my mom will be able to visit her for awhile.  In fact, I need to give you my contact information and ask that you call me in case of emergency or if Grandmom needs anything."

Behind the desk, the nurse and several nursing assistants all stopped what they were doing and looked at me like I was speaking in tongues.  One of the CNA's leaned in and said, "Are you talking about that really nice bald-headed man that visits Miss Nellie all the time?"

"Yes, that's my dad," I told her.

"He's not sick," she asserted. "He was just up here to see her a few days ago, and he was smiling and joking around like he always does. He's the picture of good health!"

I could tell by the looks on the faces of everyone who was listening that they thought I was mistaken.  I understood their thought process; it was the same one that was going through my head repeatedly, fueling my shock and disbelief as well.  I gave them a brief run-down on what had happened: "He got sick while he was out running last Saturday and was taken to the hospital, where they found out he had a mass in his head.  Yesterday, he had surgery, and we found out that he has brain cancer."  There.  I said it, out loud, for the first time.  I felt sick to my stomach, until the voice in my head told me that it wasn't true, it couldn't be true.  

But it was.  In what would become a pattern from that moment forward, as soon as I delivered the awful news about my dad, I was put into a position of having to try to comfort the recipients of the news.  The second after the words left my mouth, I felt guilty about having had to deliver such a blow.  I've since learned that there is a term for something like this called  'vicarious traumatization,' which happens when a trauma specialist spends day after day being exposed to another's trauma.  But it was necessary that they knew, and the news was out.  "We do not want my grandmother to be told about my dad; please make a note in the chart and be sure everyone knows."  I stood there watching them try to keep their composure, until the nurse whom I had originally addressed stepped from around the desk and hugged me.  When she backed up, she had tears in her eyes, and she said, "I'm so sorry.  Please tell him and your mom that we will take extra good care of Miss Nellie."  I swallowed my own tears, thanked her, handed her a piece of paper with my contact information and instructions about having the laundry done for Grandmom on it, and backed away, before I lost it.  

Thinking back, I wonder if what I thought was true actually was:  did I insist that Grandmom not be told because it was better for her, or for us?  Was it too much for her to handle having to hear the news, or for me to have to tell her?  Was it taking the easy way out in avoiding having to deal with her emotions?  Was it protecting her or us?  I think it was for her sake, and for Dad's, but like a lot of things that went on during that time, I can't be sure.  Whether or not it was right to decide not to tell her that day and in the weeks that followed is something that I have questioned many times since then.  Regardless, though, with Grandmom's care squared away, Jennifer and I left the nursing home and headed back to the hospital.

In a life-is-weirder-than-fiction moment, later that day we discovered that Robbie, one of the nurses that was on Grandmom's hospice service, also worked at the hospital where Dad was.  She heard about Dad from the nurses at the nursing home and came to see Dad in the ICU.  (Maybe she was verifying the accuracy of what I'd said for the rest of the staff at Grandmom's facility.)  It seemed to confuse Dad at first when he saw her there, which I actually thought was a good sign, because it was kind of puzzling to have someone involved in Grandmom's care show up on the scene at the hospital where Dad was.  Robbie asked some questions about what had happened and about what was going on with Dad, and then she told us that she would check in on Grandmom more often than usual and would report back to my parents.  We were grateful to have the help; it eased our minds, especially Dad's, to know that Grandmom would be getting some extra attention and interaction.  

It's funny how what seems tragic can change in a single moment.  As things were, after the news of hospice care having become necessary for Grandmom, my family was grieving.  It seemed terrible to have had to watch her decline as she became more physically challenged and more disoriented.  And now, in the blink of an eye, the tragedy had changed, or maybe it had just widened; our perspective and possibly even our forbearance had been altered by Dad's sudden illness.  I think we just thought that was the one-two punch that we just had to get through, that if we could rally and shore up, things would get better.  We had to think that way; it was the only thing keeping us from falling apart.

To Be Continued ... Not Knowing, Part 2

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