Wednesday, August 1, 2012

Not Knowing, Part 2

Continued from Part 1

It's not always easy to visit someone in a nursing home; seeing a person that you care about in that type of environment often brings up a lot of emotions, some of which are not very pleasant.  Although I did it as often as I could, before my dad got sick, I thought it was emotionally difficult to visit Grandmom; she had changed so much in such a relatively short period of time, and she seemed so sad, so lost, so much of the time.  

Dad with his mom, on her 89th birthday, one year before she was put on hospice and 13 months before he was diagnosed with brain cancer

After Dad's diagnosis, though, it was even harder, physically - because my sisters, our mom, and I needed to be with Dad - and emotionally - because we had decided not to tell Grandmom about Dad's condition.  When we went to see Grandmom during that time, we had to come up with things to talk about in her presence that didn't have to do with what was going on with Dad, which was very challenging because, truth be told, Cancer and the things that came with it were pretty much all any of us were thinking about then. But we did what we had to do, and we visited Grandmom as often as we could, as Dad made it through surgery, and then went to rehab, and then went to the Brain Tumor Clinic at Duke, and then started chemo.

My family had made the decision not to tell Grandmom about Dad's illness early on; when my sister and I went to visit at the nursing home for the first time after Dad had been diagnosed, we shared the bad news about Dad with the staff there but made it clear that the information was not to be shared with Grandmom as we did not want to upset her.  Then, when Grandmom took a turn for the worse on the day after Thanksgivingwe took that decision a step further by extending the shelter to Dad as we kept the news about Grandmom's decline from him. As we had been doing with his mom, we didn't want him to have to worry or to feel guilty about anything, given what he was battling himself at the time.

Even after the hospice nurse predicted that Grandmom wouldn't "be with us" for more than a couple more days after that, somehow she pulled through, a testament to her strength and a sign of what we later realized but didn't know at the time - looking back from our vantage point now, it seems that Grandmom was waiting to say goodbye to her son, and, not realizing why he wasn't there so that she could do so, Grandmom hung on, literally for dear life.

Me, showing Grandmom one of the cards she got for her 90th birthday, just before she went on hospice care
After Dad's second round of chemo, at his insistence, my mom and my sister Nancy took him to visit Grandmom at the nursing home.  He had been getting around my parents' house using a walker, but he had a wheelchair for longer distances and that's what he used for transport that day.  As always, Grandmom smiled from ear to ear when she saw Dad that day; discordantly, in what I saw as both a relief and also an alarm, she did not seem to notice the wheelchair or the jagged scar on his head at all.  

Not long after that, Dad had to go to the hospital for the second time and was in such critical condition that it was all we could do to manage the care that he needed between my mom, my sisters, and me. My sisters and our children visited Grandmom on Christmas Day, again keeping the news of Dad's situation from her, and reported back that she was doing about the same, holding her own and hanging in there.  Other than that, though, for the ten days we were in the hospital that second time around and during the six days after that when Dad was home before he went on ahead, we relied on reports from the hospice nurse who called every two or three days to report on Grandmom's condition, and we were relieved each time to hear that there had been no change on that front.

Christmas Day 2010

When we made the decision to bring in hospice care for my dad, it was difficult to wrap our brains around the fact that both he and his 90 year-old mother were both on hospice.  The way that Grandmom had defied the odds so far, despite the fact that her doctor and later her hospice nurse had both said her days were numbered - not once but twice, over the few months preceding that time - allowed us to believe that Dad would persevere and beat the odds as well, thus potentially allowing both of them to be with us for some time to come.  Those rose-colored glasses were a very powerful coping mechanism for us at the time, but they were also what created the perfect storm-type of setting for my family to enter into a state of utter shock when Dad went on ahead, less than a week after he came home from the hospital and hospice care had begun.

We just thought it was hard to visit Grandmom before all of this happened; after Dad's death, it was an overwhelming and almost insurmountable feat, for so many reasons.  Again, the shock that we were all dealing with in our early grief made it difficult to put one foot in front of the other at that point; I personally felt as if I was in the middle of a nightmare from which I kept expecting to awaken.  Dazed, confused, stunned, devastated - all of those things made it challenging to do much of anything in those days.  Pretty much everybody that I came into contact with in the month or so after Dad's death knew what my family had been going through, and so thankfully I was spared having to say the words about what had happened out loud:  saying My dad died was something I was not adequately prepared to get through for many months after the fact.  Telling Grandmom that her favorite person in the world, her son, whom I am sure she still thought of as her baby, as someone for whom she was responsible for protecting in many ways, was no longer on this earth, was more than I could cope with at that time.  Even more than I didn't want to tell her, though, I didn't want her to have to know.  Whenever I thought about breaking the news about Dad's death to Grandmom, I kept going back to what I had learned for myself the night before Dad's surgery and what I still believed to be true: not knowing is not always the worst thing.

I saw a story today about an Olympic diver from China whose family kept the news of the deaths of her grandparents and of her mother's battle with cancer from her for years while she was away living at a training camp, presumably so as not to distract her from achieving her goal of winning a gold medal at the Olympics (which she just did). 

I realize that the vast majority of people who read that story will think it was unreasonable or possibly even cruel to have kept that news from the young athlete, but I just don't think it's something that can be adequately understood by those of us who live in situations were there hasn't been such value placed on competition and on winning .  I think such values, much like grief, can result in some very different choices being made, but that doesn't necessarily make those choices wrong.  For the most part, all of us do what we think is the right thing to do in the given circumstances, given our resources and our perspective, and I'm sure that's what this girl's family was doing as well, just as we were doing by not telling Grandmom about Dad.

Sometimes, though, lessons can only really be learned by living, and perspective can only be gained through experience.  A few weeks after Dad went on ahead, my mom started getting phone calls from the nursing home about an increase in Grandmom's levels of sadness and anxiety.  Grandmom actually had several episodes of what I can only think were panic attacks; she could not communicate clearly enough to explain to anyone what was going on, and so the only thing anyone could think of to do to help her was to increase her anti-anxiety and anti-depression medicines.  That ended up helping some, but we continued to get reports that she still she seemed distressed much of the time.

Not long after Dad's memorial service, I started going to a grief counselor.  The first thing I asked her in our first session was if she could recommend any books for me to read that might help me.  (Side Note:  That was the beginning for me of a shift from being obsessed with researching treatment for brain cancer to being nearly consumed by wanting to learn more about grief in an effort to cope, something that I continue to do even now.)  The book she suggested was "Final Gifts", which was written by a hospice nurse named Maggie Callanan.  In reading it, I learned many things and gained a new frame of reference, and I also started to think that maybe we were making the wrong choice by not telling Grandmom the truth about what had happened to Dad.

Continued ... Not Knowing, Part 3