This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
Did you know that,despite that fact that over 13,500 children will be diagnosed with cancer and about 2,500 kids in the U.S. alone will die from this disease this year, only about 4% percent of the annual budget of the taxpayer-funded National Cancer Institute (NCI) is dedicated to childhood cancer?
Hearing that makes we want to do something about it. All cancers are devastating; childhood cancers are the worst in that the smallest, most vulnerable amongst us are affected, not just by the disease but by the ravages of the often brutal treatment. Obviously the children who have been diagnosed with cancer who have not survived have had a great deal stolen from them, as have their families. But here's another point to consider: even children with cancer who do survive are being robbed of those months and years of their childhood and are often left with secondary effects of the cancers and/or the treatments that they had to endure to make it to adulthood. Through reading about cancer in general and then about childhood cancer specifically, I found out about a campaign called The Truth 365, which is an organized effort to educate the public and generate action to help fight childhood cancer through film and social media. Through the group behind this campaign, individuals like you and me are able to DO SOMETHING to help, through taking just a few minutes of our time. It isn't a telethon or a fundraiser; it's an awareness campaign, and it's something that has never been done before in this way. If you are interested in helping in the effort to protect children from this terrible disease, post a link to this blog entry on your social media accounts like Facebook and Twitter and share it with people you know. Then take some time (about an hour, but well worth it) to watch the powerful documentary film produced for The Truth 365 to find out some simple things that you can do to help battle this terrible beast:
The organizers of this group are trying to raise awareness to increase funding for research and treatment of childhood cancers, not just so that more children who are diagnosed with cancer live but also so that those who do survive are not left with a lifetime of detrimental side effects of treatment. They want people to understand that the statistics that we hear - that up to 75-80% of children who are diagnosed with cancer survive - paint a picture that is not all together accurate. That statistic, for example, is only based on a five year survival rate, and many of the children who make it to that point do not go on to survive longer term. They want everyone to be aware that the increase in survival rates that we hear about in kids with cancer over the past few decades have mostly come from these children being given greater and stronger amounts of drugs that were developed for use in adults and that very often no one knows exactly what the effects of these treatments in children will be. They want us to see that doctors and other health care professionals who are trained to treat these very sick kids and to research the treatments that can save them are having to spend time fighting for funding instead. They want us to know that with no money and with just a few minutes of our time, we can do something to help in this cause.
The film will enlighten you to the facts that we all need to know, whether we personally know a child who has cancer or not. Through the film and through viewing the group's website, you will find out about action steps that need to be taken to further increase awareness and support and to secure the funding needed. You will learn in viewing the film is that each of our Congressmen have been asked to sign a pledge which affirms his or her support for children with cancer.
A listing of those U.S. Representatives and Senators who have signed the pledge has been posted here -
by state, so that we can see who still needs to be encouraged to sign this pledge. For example, in Tennessee, two members of Congress have yet to commit:
They are asking us to contact members of Congress who have not signed the pledge to ask them to do so. Most of the contact info you need is right there on the site; if you live in Tennessee, you can click here for Bob Corker's contact infoand here to contact Chuck Fleischmannto let them know the importance of their commitment to this issue.
When you get to the website, bookmark and check back as often as possible to find out about the latest iniative of the group and how you can help, often with just the click of a mouse button.
There are lots of causes and organizations that ask for donations of money and items, especially during this time of year, but this one is unique in that all they are asking for is a few minutes of our time. The greatest reflection on us as a society and in my opinion as individuals is the way we treat those who are less fortunate than we, and I can't think of an easier way to do that than to participate in this effort.
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 evenharder, 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 Thanksgiving, we took that decision a step further byextending 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 glasseswere 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.
There were lots of surprises during the time that Dad was fighting cancer, from the first announcement that he was sick to the rapid downward spiral that brought hospice into the picture much sooner than I had ever thought could be possible.But one thing that did not surprise me was the way those of us in the inner circle handled things.Time and time again during the hardest ordeal any of us had ever gone through, we pulled together in support of not just Dad but of each other.To be clear, though, we didn’t need a terminal illness, a phone call with terrible news, or a surgeon in the Room of Doom to remind us of how much we meant to each other; we were already very well aware of the preciousness of love and of life.
But when I think back about the collection of things, both little and big, that my mom, my siblings, their spouses, and our children did to care for Dad during that time, it warms my heart; it reminds me of the bond that we share and the fierce love that we have for my dad and for one another.
It stands to reason that a person’s spouse and adult children would make every effort and go to extremes in a life-threatening situation; one of the things that stands out in my mind as being exceptional though was the devotion of and the way that my husband and my brothers-in-law cared for my dad, which is something that I think exemplifies my dad’s relationship with the three of them, each of whom played a very important role in caring for my dad during the course of his ten-week long illness.
I suppose having a good relationship with the spouse of your adult child can be tricky, maybe especially between a father and his daughter’s husband. A father is always supposed to look out for his “little girl,” and certainly Dad always did that for my sisters and me, but maybe in a less traditional way than some other fathers. Dad wasn’t a hold-your-hand kind of guy in his parenting style; he always expected us to do the right thing, and he didn’t flatter us unless the praise was earned and well deserved. Looking back, I see his method of “fathering” us as adults as one in which he trusted us to be able to take care of ourselves based on what we had learned while we were growing up, and that included his having confidence that all three of his daughters chose to marry good men, men with whom Dad could be friends and with whom he could share a mutual respect.
Another thing that held true for my dad was that he could always take a joke. He wasn’t one of those people who could dish it out but couldn’t take it; in fact, he seemed to enjoy being the target of a prank or having people poke fun at him. There are many examples in my memory bank of this, and some of these involve my husband, Nancy’s husband David, and Jennifer’s husband Peter. One of their ongoing pranks on Dad over the years was dumping cold water on him when he was least expecting it on family vacations; there was great strategizing and even greater laughter each time they pulled this off.
Photo 1 of 2 from Water Dump #1 (notice Peter being sneaky in the background)
Photo 2 of 2 from Water Dump #1 - Dad's response: "Man! That's cold!"
Result of Water Dump #2 (off the top of a houseboat)
Sometimes the laughter came from conversations between Dad and his sons-in-law, talks during which Dad always played the role of the dizzy-blonde. During a family vacation about six years ago, our husbands were discussing computer programs they used in their jobs and the subject of needing support from their companies’ “I.T. guys” came up.Dad thought they were spelling the word “it” and asked what the job description was for an “it guy.”When they told him what “I.T.” stood for, Dad got really excited and proudly announced, “My company has an I.T. guy too!We’ve all got ‘it’ guys!”And of course that became one of the frequently repeated phrases during that trip and from that point forward.
Other times Dad’s own actions resulted in some friendly ridicule, and sometimes these incidents involved Dad’s fashion choices. On at least one occasion, when Dad got ready for the day, one of us recognized that the jeans he was wearing weren’t actually his – they were my mom’s!(We could tell because of the tapered legs of the jeans, which apparently escaped Dad’s notice when he put them on.) When this was pointed out to Dad, he laughed at himself and said in a mock-confused sounding voice, “Huh? Are these my pants?” This became the standard statement in my family when someone was caught doing something scatterbrained, an expression that we use in my house to this day. Another humorous exchange occurred at my house when Dad pointed out his new shoes to my husband; my husband took one look at Dad’s footwear and then asked, “Do they sell men’s shoes where you got those?” It took Dad several seconds to process the fact that Kevin was implying that his new shoes looked like women’s, but once he did he couldn’t quit laughing about it; in fact, for years afterwards, Dad often asked Kevin, “What did you say about those new shoes I got that time?” and the two of them would crack up as they relived the conversation.
Sometimes Dad intended for what he did to be funny; he loved to get a laugh from others and obviously didn't mind it being at his own expense. A few years ago during the SuperBowl, Dad evidently got bored and told Mom that he was going to take his Diet Coke and take a bubble bath. (I'm guessing that she thought he was kidding, but he wasn't.) When he got situated in the tub, he shouted for her to come in and take his picture so she could email to his sons-in-law, all for the sake of getting a laugh. Here's the result:
On some occasions, Dad tried to reciprocate the pranks that were played on him, although it was a challenge because, like me, he typically had a hard time telling a joke, scheming without being detected, and executing his plan while keeping a straight face.On one Christmas about seven years or eight years ago, Dad gave each of his three sons-in-law The Perfect Push-up (“As seen on TV!” he exclaimed when they opened their gifts.) and then sportingly challenged them to a push-up contest with the new gadget.(I must report, to the chagrin of the three men who were roughly half Dad’s age at the time, that Dad was the champ of the Perfect Push-up Challenge that day!)
But for all the pranks and fun-poking that went on during the course of their relationships with my dad, Dad’s sons-in-law were as fiercely protective of him as we were while he was sick. The respect and the love that they had for him were so evident and so touching, and it’s something I will never forget. During the first few days after Dad got sick, as we waited for the green light for the surgery that would give us the diagnosis, it was mainly just my mom, my sisters, and me there in the hospital room with Dad. On the day of the surgery, my husband drove from out-of-town to be with us as we waited while Dad was in surgery, and then he helped to hold me together when the neurosurgeon handed down the diagnosis and the prognosis. From that point forward, my husband and my brothers-in-law became part of Dad’s league of protectors, a role in which they excelled because of their strong relationship with him from over the years.
On the night after Dad’s surgery, my mom, my sisters, and I were completely exhausted. Kevin volunteered to take the late-night shift with Dad in the ICU. As was par for the course, Dad slept “zero” that night. Whether it was a tough-guy act or a state-of-mind from after the surgery that he had been dreading, Dad seemed less anxious with Kevin around that night; in fact, when Jennifer and Nancy got to the hospital in the early morning hours to relieve Kevin, Dad and Kevin had all the lights on in the room and were laughing, watching football, and discussing politics. Not the sleepy-time setting the females in the family would have thought to provide, but just the right thing for Dad at the time, an oddly-placed sense of normalcy and some great male “binding time” (as Dad called any bonding experience while I was growing up.)
Later that day, my brother-in-law David arrived on the scene; like my husband and my other brother-in-law, David is one of the most compassionate people I know, and, also like Dad’s other two sons-in-law, he was perfect for the role that he played during Dad’s illness. On the day after the surgery, Dad was still consumed with worry about time and somewhat disoriented about what time of day it was. Over and over, Dad looked at the clock on the wall of his ICU room and incredulously asked if the clock was right; he just couldn’t believe how slowly time seemed to be passing. David came up with a strategy that helped Dad right away: he covered the wall clock with a shirt to cut down on Dad’s anxiety about what time it was.
From the moment on the day after surgery that Dad was given the go-ahead to eat whatever foods he wanted, through Dad’s struggle to take in more calories despite his lack of appetite, to the last foods that Dad ever ate, his three sons-in-law were at-the-ready to get whatever Dad wanted to eat for him, at any time of the day or night. They made countless trips around the clock to get foods Dad was specifically requesting from restaurants and the grocery store and served as short-order cooks when Dad was able to eat food at home. They didn’t guilt or pressure Dad into eating, but the second he mentioned that he might like to have a certain food, they found a way to provide it for him, just in case.
When my brother-in-law Peter took a red-eye flight to join my sister Jennifer, my parents, and me in Durham on our second day of appointments at Duke, he served as the logistics guy, helping to get Dad ready and out the door on time so we could make it to our early-morning appointment at the clinic, figuring out that Dad was safer and more efficient using the wheelchair instead of the walker during the trip, driving all over town to find a hotel that wasn’t already booked for the night before Thanksgiving, finding a set of safety bars and borrowing tools from the hotel to install the bars on the toilet in the bathroom for Dad since the hotel was not handicap accessible, and then driving the whole way home with Dad riding “co-pilot” that hectic Thanksgiving Day (with the two of them eating all of the gummy candy they could for entertainment along the way). His presence was definitely calming for Dad and for us, and having him there for that part of our stressful trip was so helpful.
One of the things that Dad worried a lot about during his illness was having his face shaved. (He wanted to have his head shaved like he usually did too, but, due to the staples and then the scar from the surgery, that wasn’t an option, and so Dad just focused on having a clean-shaven face.) While something like that would not be of any concern at all to some men who were so sick, Dad was impeccable in his grooming; all my life, I can remember him shaving at least once per day, even on weekends. Without a doubt, he was precise and proud – but not at all vain – about his appearance, a fact that did not change during his illness. Many times both in the hospital and after he went home in between hospitalizations, Dad got help with his shaving routine from one of his sons-in-law because his dominant left hand still wasn’t up to par.
At first, it seemed like having them help him might take away some of his dignity, but right away we could tell that, with the way they handled it, their support actually gave some dignity and a sense of independence and routine back to Dad. The day before we left to go to Duke, we were all running around getting things ready for the trip. Dad kept saying he needed to shave, and finally I asked him if it couldn’t just wait. “I just need to shave,” he said insistently. “It just makes me feel better. Hell, I even shave on vacation, and this certainly isn’t a vacation.”Point taken. I didn’t trust myself with shaving him, and so Dad was so glad when David took care of it before we left on our trip, as he was when David helped him with it again in the hospital on the night before Dad came home on hospice.
Peter, shaving Dad
My husband and my brothers-in-law were the muscle and the strategists behind the equipment and the furniture that needed to be set up or rearranged at my parents’ house during Dad’s illness.They installed grab bars by the toilets and in the shower, moved couches and tables, and rolled up area rugs to make the environment as safe and as convenient as possible for Dad.I will never forget the way they moved the hospital bed from the den to my parents’ bedroom and then so carefully and tenderly moved Dad so that he wouldn’t be scared or hurt.Part of the peace and the comfort that we were able to provide for Dad once he came home was due to their presence, and, knowing the three of them so well and seeing how much they too loved Dad, none of that was a surprise.Like my mom, my sisters, and me, they were paving the way, doing whatever it took to care for Dad, and that is something I will always treasure and value more than I can adequately express.
On the afternoon of Christmas Day, a parade of specialists came to see Dad in the ICU. Dad continued to be somewhat confused with bouts of head, stomach, chest, and/or throat pain and still with no appetite, although he ate some yogurt, a popsicle, and some ice cream with encouragement from us over the course of the day.
All of the consulting doctors that day were new to our case, and we asked each of them to give us their opinion about what was causing Dad to be so sick and their thoughts about what should be done to help him. When the neurologist came in, he asked Dad the standard orientation Questions, and Dad seemed fairly clear except for the fact that he thought he was 41 years old. The doctor gently pointed out his actual age to him and then said that confusion as well as lethargy and weakness can stem from a severe blood infection like Dad had been fighting and also from wildly fluctuating blood sugar levels, which had been also been going on with Dad. Dad listened earnestly and then asked, “Do you think I’m going to die soon?”
I felt my breath catch in my throat. “No,” the doctor responded evenly. “In fact, as far as I know, all of the doctors here think you are going to get better.”
“I thought I remembered that someone told me this morning that I am dying,” Dad said.
The doctor looked him straight in the eye and said, “I think your memory isn’t all together accurate right now. Just a minute ago when I asked you how old you are, you said 41, and that’s not right, is it?”
“No, I guess it’s not,” Dad said.
“I think some of that confusion is what’s making you wonder about dying, too,” the neurologist told him gently. I watched Dad’s face, and I saw him trying to accept that news, trying to believe what he was being told, trying to swallow that pill, trying to get past his fear. I could tell by the look on his face that he was only partially convinced, and I so wanted him to see that he needed to trust us when we told him that he was going to get better.
The doctor reinforced to Dad that nutrition was very important and that he needed to eat in order to get better. Dad agreed and said that he would try harder to eat even though he was “zero hungry.”
Also in the lineup that afternoon were a neurosurgeon, who told us that based on the MRI and CT scan on file he agreed that the tumor seemed “stable,” and a cardiologist, who noticed on the latest lab report that Dad’s ammonia level was abnormally elevated, which can cause confusion, loss of appetite, stomach pain, and weakness. [Side note: I later learned that an elevated level of ammonia in the blood can be a sign of kidney/liver failure, and I wonder now if this was the first sign that Dad’s body was starting to shut down.] The neurosurgeon said that he was concerned about the high dose steroids that Dad was taking, and he made a slight adjustment to the dosage in hopes that it would help improve Dad’s condition. Because we were watching over Dad like hawks and because we were searching so frantically for an answer, we asked the cardiologist about something that we had seen come up on the monitor readings over the past 24 hours for the first time: PVC’s, or premature ventricular contractions, otherwise known as an irregular heartbeat. A PVC can occur for many different reasons, ranging from the onset of a heart attack to things like a side-effect of certain medications or from stress and exhaustion. This reading explained the chest pain that Dad had reported (and that hadn’t really been addressed by the medical team) since he had been admitted to the ICU, and we were concerned that it signified a problem with Dad’s heart. The cardiologist said that he felt it was related to anxiety and possibly to nutrition/hydration issues but that he would investigate it further should the pattern continue.
Evidence of a PVC on the heart rate monitor
Back at my parents’ house, we had the minimum of tradition covered for Christmas.We took shifts spending time with the kids, each of whom also took a turn sitting with their Gramps in the room in the ICU that day.We ate in the hospital cafeteria during the limited “special holiday hours” it was open that day (hours that are not so special to family members of patients who are sick enough to be in the hospital on a holiday); we were so sad and so worried, but, as we had been, we were together in our effort to help and protect Dad.
Dad, of course, continued to be friendly and polite to everyone with whom he came into contact. In between visits from the doctors, Dad chatted briefly with the nurses and aides. Even when he was in pain, he doled out thank-you’s and was obviously trying to keep what he considered to be complaints to a minimum. At one point, he saw a woman mopping the floor just outside the room next to his on the unit. He strained to move his arm from underneath the covers and then waved at her. She was busy working and didn’t see him, and so he waved several more times. Finally, he turned to my sister and me and said, “Why isn’t Kathy waving back?” My sister and I exchanged a look and then asked him for clarification. His explanation clued us in to the fact that he thought it was my sister’s mother-in-law and that he couldn’t understand why she didn’t stop mopping long enough to wave back. He seemed convinced, even though the cleaning lady looked nothing at all like Kathy. We decided to let him have this one and told him that she was probably just really busy, which he accepted, thankfully since we knew he was exhausting himself with all of the waving.
Dad continued to ask for reassurance that he wasn’t dead; he seemed to be trying to “catch” each one of us alone to ask us again, just to make sure we were all SURE. And even then, even after being told by each of us whom he trusted so much and by all of the medical staff whom he respected, I could see the doubt in his eyes and hear the uncertainty in his voice. It wasn’t like he thought we were lying to him; it was as if he was convinced that we didn’t really have all of the information, that we weren’t clear on all of the facts, and that we just didn’t know what we were talking about. We had several surreal conversations and exchanges with him about being alive vs. being dead; a few times Dad asked, “How will I know that I’m dead?” Finally, I pointed out the pulse oximeter that was affixed to his index finger and told him that the little red light on the device was proof that he was alive. I wasn’t sure he would buy it, but evidently he did because from then on he kept a close watch on the light on his finger.
But still, Dad wasn’t done with that conversation. Death and dying were very much on his mind; it was like he couldn’t shake the thought or the feeling, much like his body couldn’t shake whatever was going wrong with it. Late on Christmas night, my husband, my mom, and I were standing guard over Dad in his tiny, freezing cold room in the ICU. The three of us had our masks and gloves on to protect Dad and our winter coats and hats on to keep us a little warmer. Dad’s hospital bed was in the middle of the little room, pointing towards the nurses’ station and facing the sliding glass doors. Behind him was a window that overlooked the hospital grounds. I looked out the window and saw snow coming down hard; it was a white Christmas indeed. A wave of despair hit me; I was so sad that Dad couldn’t see the big, beautiful snowflakes that were falling just outside his window. For a second, I considered trying to turn his bed around so that he could see it, but then I realized that he was so sick and so miserable that he just couldn’t even care about anything else. Like us, Dad didn’t need Christmas presents or money or material things at all; he just needed his family and their love. My eyes went from Dad’s face to the window and back, and then Dad said, “What’s it like to die?”
Somehow the room got even quieter than it had been a second before. As we had all been doing since Dad had gotten sick, Mom started to respond to Dad by reassuring him that he wasn’t going to die, but, for some reason, I felt an urgency to address his question directly. Trying to piece words together in the best way that I could, with a shaky voice I said, “I think you just stop breathing, and then you don’t hurt at all anymore. You won’t be cold, and you won’t have anything to worry about; you’ll just be at peace.” I was hoping to target the things he seemed to be most afraid of; I was hoping to comfort him even though I really had no knowledge or basis with which to do so. I wish I’d been more prepared; I wish I’d been more eloquent. It’s one of those times in life that you can’t rewrite the scene, you can’t take back or add words, you can’t do it over. I just had to hope that it was enough to give Dad the peace he seemed to be so desperately seeking.
Dad, with Mom and friends on a camping trip several years ago
My dad was always one of those people about whom it could be said didn’t meet a stranger. He honestly considered every person with whom he came into contact to be a potential friend, and he was consistently and genuinely kind in every situation. He once told me that he didn’t see why everyone didn’t make an effort just to say hello to every person with whom they crossed paths. “Even a dog knows it’s better to wag his tail to greet people he passes on the street,” he said.
During the time that Dad was sick, we received many cards, emails, Care Page messages, and phone messages of concern and love, and we appreciated all of them. On the front lines of the war we were fighting, we were frantically trying to keep our heads above water, plugging the holes in the dam for as long as we could, though, and the daily challenges and the shock with which we were have to cope were so overwhelming that it was all we could do to get it together to post on the Care Page every couple of days or so. Returning individual phone calls and emails was just too much, both because our time was spent focusing on Dad and the things that needed to be taken care of as part of taking care of him and also because it was just too much to even consider detailing the tragedy of it all out loud outside of The Bubble of our immediate family. It was just one of the cold hard facts about how it was when Dad was sick; our propensity to reach out was thwarted by the outrageousness of what was happening, but unfortunately the closing of the ranks ended up being something that we later learned had affected how Dad felt about himself and his views about the impact and the quality of his own life.
Not long after the second round of chemo, Mom got a phone call from one of Dad’s best friends from the small town in Missouri where my parents used to live. Dad’s friend said that he was going to come over to visit Dad. Other friends had offered to visit many times since Dad had gotten sick, but up until that point we had declined their offers for several reasons, most notably that we were concerned that contact with others could impact his health both physically and emotionally. We’d been warned by the oncologist about the dangers of germ exposure for a person on chemo. Another concern was that Dad’s problems with memory and reasoning would travel like wildfire through the gossip lines and reach his coworkers and his clients, which would be a source of embarrassment to him. Because of the logistics of caring for him while he was sick, Dad didn’t have a lot of privacy, and we felt strongly that we should do what little we could to protect him.
But this friend wouldn’t take no for an answer. He insisted that he just wanted to check in but assured us that he wouldn’t stay long. We were worried that Dad’s friend would not be able to hide his shock when he saw the changes that were so apparent in Dad. As much as possible, those of us who were around regularly were striving to act as if it was no big deal that Dad had to use a walker to get around the house and that he needed reminders about what day of the week it was or the fact that he wasn’t going back to work the next day.
On the day of the visit, Mom and my sister helped Dad get ready, and he was seated in his chair in the den when his friend arrived. The conversation flowed without too much of a hitch, and, after about 30 minutes, Dad got up to go to the bathroom (of course, without waiting for help). He used his walker to slowly make his way down the hallway, and his friend didn’t miss a beat; he expertly disguised the shock and sadness he must have felt to see such drastic changes in the man with whom he used to share the course of their weekly Saturday morning twenty-mile runs. When Dad resumed his position in his recliner, they visited for a while longer and then his friend said he had to go. Dad was both exuberant and exhausted afterwards; he lied down on his bed to “rest his eyes” with a big smile on his face.
Of all the memories I have from during the time surrounding Dad’s illness and subsequent death, this is one of the ones that is guaranteed to make me sad to the core every time it pops into my head:
Late one night when I was sitting up with Dad several weeks into his illness, he abruptly changed the subject from whatever we were talking about by saying “I don’t even have any friends.”
“Oh Dad, you are wrong,” I said, with tears in my eyes, “and I wish you knew just how wrong.”
With his eyes wide in amazement, he said incredulously, “I am?”
“Yes, Dad,” I told him, “I know you are usually the one who knows best about a lot of issues, but you have to believe me when I tell you that you have more friends and more people who love and respect you than anyone else I know.”
“OK, I hope you’re right, because it’s really important to have friends,” he said, and then he drifted off to sleep.
I’ll never know if he fully believed me or otherwise realized the depth of the truth to what I said that night. In something that I think we could only have seen in hindsight in our situation, I wish so much that we had encouraged any of Dad’s friends who were so inclined to visit while he was sick. Being a true friend was one of the many things at which he excelled, and he needed to know beyond a shadow of a doubt that his friends were rooting for him as he fought, that the many people who cared about him were there for him in the shade as well as in the sunshine, and that those who knew him were changed for the better for having known him.
Just after Dad was moved to a room on the neuro floor, reinforcements arrived; my husband and my daughters, my youngest sister’s husband, and my brother joined us, a welcome distraction for Dad and much-needed support for my mom, my sisters, and me.
The first order of business in the new room per Dad’s request was getting his face shaved. Due to the lingering problems with sensation and strength in his left arm and hand (his dominant), Dad needed help shaving, and my brother-in-law volunteered for the job. “I feel better already!” Dad exclaimed when they were done. He wanted his head shaved too, but we reminded him that the surgeon had said the incision couldn’t get wet yet so that part had to wait.
“I think I’m finally tired of watching football,” he commented later that day. He was an Auburn University graduate and a fan of their football team, and so we thought he would enjoy watching the game on TV that afternoon. His attention span and his energy level were not up-to-par, though; he couldn’t handle watching TV or even having a conversation for more than a few minutes at a time. He repeatedly requested that Mom bring his cell phone and/or his laptop to him at the hospital; at one point he even said, “She keeps hiding it from me so I won’t do work.” We pointed out to him that he had just had brain surgery a few days before, but he was unwavering in his campaign to get possession of especially the cell phone back.
Full disclosure: we weren’t just worried that Dad might overtax himself if he was given his cell phone and/or his laptop. We wanted to protect the brokerage company for which he worked, his clients, and most especially him because we knew that his memory, reasoning, and impulse control were skewed. We couldn’t tell him that, though, and he wasn't able to realize it himself, but as a result he was frustrated and sometimes angry about the lack of access and independence.
As an occupational therapist, I started asking about Dad getting OT and PT right after his surgery, and the Pass the Buck/Wait and See Game continued. First we were told he would get therapy when we got to a regular floor instead of the ICU. Then we were told they “don’t do therapy on the weekend (even though he was moved to the regular room in the early afternoon on Friday). Evidently, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon (a different one from the one who gave me a fake non-working cell phone number the night before the surgery) came to visit on Saturday, he asked how P.T. was going and was surprised when we said it wasn’t. About an hour later, OT and PT showed up. They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks) and checked his movement and strength (fine on the right, not good on the left). **Side note: Dad wasn't really discouraged or bothered by his newly incurred "issues" or the fact that he had gone from being Ironman-ready to needing help walking in less than a week, which speaks very loudly to the point that there was as much of a cognitive deficit present as there was a physical one.** The therapists let us know right away that they recommended a short stay in an inpatient rehab hospital and that they thought we should go and visit a few in the area right away since the doctors were already talking about discharge in a couple of days.
Dad wanted to go home, and we wanted him to be able to, but the more we watched him struggle with the physical aspects of tasks and – even more to the point – the cognitive aspects, particularly the safety precautions and his own limitations despite repeated warnings from the staff and from us, the more we became convinced that it wouldn’t be safe to take him home yet. We considered taking him home and setting up the therapies on an outpatient basis, but we were told that outpatient rehab would take place two or three times per week at the most, and of course it would require someone to load him in the car and drive him to and from a therapy facility. (The logistics of the latter were more extensive than I feel like I can clearly explain. Let's just say that Dad's impulsiveness and his "I can do it myself" attitude were not a good combo.) Obviously, we thought, the more therapy he gets in the acute phase of recovery, the more quickly he will regain function, and so we changed our focus from taking him home to finding the best inpatient rehab facility in the city.
That Sunday, on Halloween Day, we toured two rehab facilities. (We considered a third but it was part of a nursing home, and we knew that would be too hard of a blow to Dad, and - truth be told, although I am sure this was not part of our thought process at the time - on us. I kept picturing us driving up to the nursing home/rehab facility with Dad in the car and hearing him say "What the hell? Are we looking for another nursing home for my mom?")
The first rehab facility we toured was near the hospital where Dad was; there seemed to be lots of patients there who were fairly young and who had a military background, which we thought Dad would prefer more than geriatric stroke patients, but this place had strict visiting hours for family which did not include overnight stays. Basically, they didn't allow anybody but the patient to be there during any unstructured time - the time that was exactly when Dad wasn't safe when left by himself. ("What the hell??" indeed!) They said they wanted the patients to rest and/or to work on doing things for themselves during that time, which sounds great unless someone has had a series of traumatic brain insults like Dad had (the tumor, the lack of oxygen when he stopped breathing during the MRI, and the surgery). Other than proposing the use of a "bed alarm" which would be set to sound at the nurses' station if (when) Dad got up by himself when he wasn't supposed to, they could not give us a plan for how they would keep him safe since he persistently tried to get out of bed and walk around without the walker and without paying attention to safety rules. The bed alarm was not nearly adequate; he could easily have been up and in the floor with his only-partially healed skull/brain knocked against the floor by the time someone heard the alarm and checked on him. The lack of plan, and our concerns about his safety, very obviously, were a total deal breaker.
The second place on our list was about 15 minutes further away from my parents’ house and was a rehab floor in a hospital; our reinforcements had to leave at that point and so Mom stayed at the hospital with Dad while my youngest sister and I continued the reconnaissance. (The hospital where Dad was didn’t offer rehab stays - once the patient was "medically stable," he was to be discharged.) This second place seemed to be well organized, and, when we spoke with the admissions coordinator and told him we were seeking a very short-term stay with aggressive therapy services, he said that could be arranged and that family could be with him 24/7. Done.
We returned to the hospital and told Mom about our findings, and then she told Dad that she wanted him to go to rehab instead of going straight home to speed up his recovery. He was onboard with the plan even though he really wanted to go home; he was highly motivated to “get back on track,” he said.
