Bittersweet

Following is a guest post written by my sister Nancy:

Bittersweet...

I've often heard that word but have never felt that I had an appropriate time in my life to use it, until 6 weeks ago. 

Giving birth on March 24, 2013, to my firstborn was hands down both the most amazing and the scariest thing I have ever experienced.  I had envisioned the moment of his birth in my head many times over the previous 9 months and it always played out perfectly, except for one crucial part ... my dad wasn't present.

The day I found out I was pregnant, even with as much excitement as I felt, I remember thinking to myself, "This sucks - it's so unfair that my dad won't be here or ever know his 7th grandchild."  I tried not to let myself dwell too much on that fact over the months ahead, but always in the back of my thoughts I felt very bitter.

On the day of my son's birth, I tried to keep it together so as not to make the special day sad, even though Dad wasn't there, but to make sure it was memorable.  I grasped tightly to one of my dad's handkerchiefs (or "hankies," as he called them) during my entire labor process.  I kept hearing my oldest sister saying to me "Remember this, remember this!" and I wanted to focus on especially that.  My whole life I strived to make my dad proud of me and he always told me that he was, and I know without a doubt that he was with all of us in that delivery room that day at the exact moment of my child's birth and that he was so proud of me, my mom, and my sisters knowing that life really does go on - just not always the way we envisioned that it would.  There was complete joy and happiness, and there were big smiles again in our lives and yet another legacy to carry on the family name. 

The nurses allowed Nancy to wear her Brain Cancer Awareness bracelet during the entire labor and delivery process.

I look forward to having Crosby's aunts, uncles, cousins, and Gran-Gran telling detailed stories in honor of his Gramps so that my son will know my dad.  I've decided that I'm not going to waste precious time being mad or even bitter that Dad wasn't physically there for that big moment in my life; instead I will embrace the fact of all the people I love most on this earth were by my side. 

Bittersweet...

So Much For No Sequestration

I didn't know what the word "sequestration" meant until recently; in case you don't know, it's a term that refers to the making of general, broad-sweeping cuts in government spending due to budget shortfall.  

During the final 2012 Presidential debate, Obama was asked about the budget sequester, and he said, "It will not happen."

Unfortunately, though, it is happening.  Funding for categories of things in the budget are being cut and/or put on hold indefinitely, including Head Start education programs, food inspection, and medical research.  Instead of looking at items in the budget individually to see where cuts can be made without causing long-term, wide-spread harm, with a sequestration, entire categories are being stricken from the budget.  To me, making cuts in this way seems haphazard, short-sighted, and scary.  Maybe careless, lazy, and desperate too.  Actually, there is a one-word descriptor to describe the "plan" that was used by columnist Robert McCartney in an article today in the Washington Post that I think is spot-on:  Dumb.  

               CLICK HERE TO READ THE ARTICLE

Some of the areas in which these crazy cuts are projected to be made seem like a gamble; maybe, just maybe, things will turn out ok despite the loss of funding.  One area, though, in which cutting support in such an extreme fashion is literally a matter of life and death is medical research.  As the article above says, $1.6 billion is slated to be cut from the budget of the National Institutes of Health, which is already underfunded.  "NIH grants pay for most of the basic research in universities and laboratories across the country, [which] has led to practically every major U.S. medical breakthrough since World War II," McCartney reports.  

I read a lot about research in the areas of cancer and other diseases, and lately more and more often I've been seeing information about how we are so close to figuring out a cure for many of them.  Not just a treatment - a cure!  Obviously, without funding, this research will be put on hold or even shut down, and that swings the making of these cuts over into the category of being downright immoral, in my opinion.  

I wonder if the members of Congress and the President actually recognize what will happen; I wonder if they have thought about the implications of the cessation of medical research, either in broad terms or in a personal sense.  I doubt any of them have lived their lives without being touched in some way by cancer; maybe they should sit and talk for awhile to someone they know who is fighting or who has fought it, or maybe they should look at a photo of someone they've known personally who has lost their life to the disease, just to be sure they realize what they are doing with such over-zealous use of their red pens.

I realize it's challenging to figure out where spending cuts should occur when there is a budget deficit, but I'm pretty sure nobody has ever told the members of Congress or the President that their jobs would be carefree or easy.  There are difficult decisions ahead for them to make, for sure, but trying to solve the problems by simply indiscriminately slashing entire categories is just plain - and here's one more word to describe the whole thing - cowardly - and they should be ashamed.

Halloween Memories

Except for naming “5” as his lucky number and identifying his favorite meal as spaghetti and apple pie, Dad didn’t play favorites, and so he would never admit which holiday he liked the best – but I know it was Halloween. 

I remember …

*In one of the funniest Halloween party ensembles ever, my parents once went dressed as Peter Pan and Tinkerbell … Mom was Peter Pan and Dad was Tinkerbell, complete with a green leotard, tights, and wings.

*On the Halloween when I was about ten years old, I went trick-or-treating with a friend who lived down the street.  At the end of the night, I got on my bike and started riding home with my Cocker Spaniel running along beside me.  On my way home, some bullies who were out that night threw shaving cream at my dog and me.  When we made it home and Dad saw us covered in shaving cream, he went ballistic.  My typically easy-going Dad turned into the Incredible Hulk; he flew out the door and came back a few minutes later holding two boys very nervous teenage boys by their shirt collars.  They sheepishly told me they were sorry, after which Dad said, “You still have one more to go” and then marched them around to the garage so they could apologize to my dog. 

*When I was in middle school, a friend of mine and I hosted a Halloween party.  My dad rented a gorilla costume and hid in the bushes in the front yard so that he could jump out and scare people as they left the party.  Several kids were so scared they took off running down the street … but there was no outrunning this gorilla, who chased them down so that he could tell them that he wasn’t really trying to scare them.

*When my middle sister was in middle school, he took her and a group of her friends to see Friday the 13^th.  Later, when the girls were upstairs in my sister’s room about to go to sleep, I heard Dad in the garage and went to see what he was doing.  With a zombie mask on, he got out the ladder, hauled it around to the back of the house, climbed up so that he was right outside the bedroom window, and started making scary noises.  He almost fell off the ladder laughing when the girls screamed and ran out of the room!

*My parents had just moved to Charleston, Missouri, when Dad turned 50, and we decided to throw a surprise party for him with a Halloween theme.  Mom and some friends took him out to dinner while we set up for the party, and the guests hid in the bushes so that we could all jump out and yell “Surprise!” when they got home from dinner.  Since the party was a surprise, Dad didn’t have a costume, but luckily someone gave him a Big 5-0 T-shirt, which he promptly put on and then modeled for everyone.  

                               HAPPY HALLOWEEN!

Hospice

I recently came across an article in the New York Times stating that Hospice services may be being misused in some cases.  Click here to read the article.

Of course, no one goes around saying they are fine with money or resources being wasted or a system being abused.  From my perspective, though, this article is an example of a very one-sided view, most likely one by someone who has never personally had to care for a critically ill loved one or to have support from Hospice.

What this article seems to be saying is that when a person who is on Hospice survives past the six-month point, he or she was not really a good candidate for the services received under Hospice care, and that they, their family, and/or the medical workers on their case either made a mistake or committed fraud.

According to this article, 19% of people on Hospice end up receiving those services for longer than the 6-month deadline (pun intended).  As if that is a crime or something for those people to be ashamed of!

Anyone who ends up having to make the very difficult decision to bring in Hospice gets my sympathy; it’s a path down which none of us ever wants to go.  But I will also offer an empathetic sigh of relief and a sideline cheer on their behalf, too, because I have been there – and because I know that Hospice is exactly what the health-care system in our country should be like.   I know that Hospice can make a difference when nothing else can, not necessarily in the amount of time a person has left but in the QUALITY – and that’s what counts!!  In fact, not just in the quality for the patient but for the entire family.  And that will make a difference not just for those involved during the time the patient has left but for them for the rest of their lives.

There are a lot of things that are sad about the dying process, but what’s scary it is that we don’t know what to expect and we cannot control what’s going on.  We are running out of time to be able to interact with our loved one who is so sick, and we have no idea what to say or do.  We need advice, guidance, help, and support from someone who does know, and that’s what Hospice is for. 

In my opinion, Hospice is the very best of health care; it means caring for one’s whole health, physical, emotional, and spiritual.  And in some cases, I can see where having those needs met - and getting out of a germy, stressful hospital and doctor’s offices and sometimes even getting away from medicines and treatments that can cause more problems than they are fixing – can make a person BETTER, at least for a little while longer, maybe even longer than six months.

From my perspective, it makes no sense to then to punish or to invoke guilt on the person who is fortunate enough to eek out some extra time, or their families, or anyone involved in their care.  Rather, we should give them a big shout-out, throw them a party, or hold a parade in their honor, because obviously they made the right choice in choosing Hospice.

And here is one thing to which I can attest without a sliver of a doubt:  others of us, whose loved one followed a more typical pattern of Hospice which, according to this article, is surviving only 17 days after beginning in a Hospice program, made the right choice, too.

When Dad got so weak a couple of weeks after his second round of treatment, we took him to the hospital, fearing that he’d had a stroke, which is one of the potential side-effects of the medicine he was taking.  An MRI indicated that the growth of the tumor in his brain had been halted by the protocol he was on at that point, but his blood work showed severe infection in his bloodstream and an extremely compromised immune system.  Even after receiving lots of antibiotics, anti-virals, anti-fungals, and a transfusion of both whole blood and platelets, he was still so weak that he could hardly lift his head, talk, or swallow.  He wanted to go home, and we could plainly see that was the only real option for him at that time. 

Like many families in our situation probably do, though, we started out thinking that signing him up for Hospice was the same as giving up.  So we did what we had to do:  we took baby steps, cried a lot, took turns being strong and decisive, and forged ahead, as always, with a Back-Up Plan:  we told ourselves that we were just going to “use” Hospice to get him home so that he could get stronger.  We said to ourselves and to each other repeatedly that Hospice is revocable at any time, and we were on such good terms with Denial that we fully believed that we would probably revoke it once we got things under control. 

I have never seen someone as relieved as Dad looked when we told him that he was going home the next day.  He said “the best” would be if he could leave right that second, but “almost the best” would be when he got home the next morning.  He tried to negotiate just how early he could leave the next day, but, for logistical reasons, the time had to be 11 a.m.

He, of course, slept “zero,” as he liked to quantify things, the night before, par for the course for him because of the massive amount of steroids he was on, and he must have asked at least 50 times what time it was and if it was time to go home yet.  He was so wound up and anxious by mid-morning that the nurse at the hospital gave him a sedative, which knocked him out for the ambulance ride and for pretty much the rest of the day.  I was grateful for his sake for the former but disappointed by the latter; I had envisioned him coming into his house with the biggest smile on his face, finally looking happy and feeling like he was where he wanted to be. 

Thinking he would want to be in the center of the activity going on in the house, we had opted to have the hospital bed set up in the den instead of the master bedroom. When he woke up, he was very disoriented.  He said, “You promised I was going home!” because he knew he wasn’t in his bed or in his bedroom.  He was trying so hard to get himself together, to rally, and to feel lucky or even just not to feel terrible and terrified. 

The Hospice nurse came soon after Dad got home, and my mom, my sisters, and I took turns sitting at the dining room table with her and sitting with Dad.  We wanted him home, but we still weren’t sure the Hospice decision was the right one.  More than anything, we wanted to protect Dad, and we thought that part of doing that was not letting him think we had called Hospice because we had given up Hope.

But as we exchanged information with the nurse, we realized that we weren’t giving up, we were gaining – gaining some control over an out-of-control situation, gaining knowledge, gaining allies in meeting our goal for Dad, which was keeping him from hurting or being afraid.  We had found the Captain of the ship that our Plan had been lacking, and that made such a difference.  We were still heartbroken and in shock, but we were in this together, finally with exactly the kind of support needed by Dad and us, and we were as armed as we could be to care for him.  Instead of having to fight, beg, question, and monitor as we did in the hospital, we were able just to hold his hand and talk to him even when he couldn’t talk back anymore.

When all the world is a hopeless jumble
And the raindrops tumble all around,
Heaven opens a magic lane
When all the clouds darken up the skyway,
There's a rainbow highway to be found
Leading from your window pane
To a place behind the sun,
Just a step beyond the rain.

Although there are obviously things we would change about what happened during Dad’s illness that might have contributed to his rapid decline as well as other things that didn't hurt him but didn't help him either, we were so very lucky to have had a fantastic Hospice service to help us in the last week of Dad's life.  Even though it didn't change the outcome of what happened, it did change the quality of how it happened for him and for us.  

Dad was an outstanding mentor and had a great way of leading and teaching others with positive perspective and humility, and he died exactly that same way only five days after he came home on Hospice, selfless and courageous as always.  I wish so much that we could have been among those whose loved one had to get an “extension” on Hospice services because they’ve outlived the six-month time allowance, but of course we didn’t want Dad to suffer any more than he already had, and, with the support of Hospice, we realized that it was his time to go on ahead.  We are forever changed by being with him when he was sick and when he left this world, but not nearly as much as we are by having him to shape our lives over the years.

One of Dad's all-time favorite songs, Judy Garland singing "Somewhere Over the Rainbow."