Tuesday, May 17, 2016

Chapter Ten, Part 2: Making it Through the Night

I recently came across an article in the New York Times stating that Hospice services may be being misused in some cases (http://www.nytimes.com/2011/06/28/health/28hospice.html?_r=3)

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.

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 at the end 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.There in the hospital bed in my parents’ den on New Year’s Eve, it was so apparent that Dad was so sick.  Yet I was still desperately clinging to the Hope that just being at home would help him.  I don’t think that I still thought that a cure - or even long-term survival - was a possibility.  At some point in the days before, I had bargained those things away:  Just let him feel better, just let him get home, just let him not be scared or in pain, I thought.  He was home, and we were so, so glad and grateful for that, but we were still waiting on the other two parts of the Deal to come through.  

There was a definite sense of protectiveness in the house at that point; we were all racking our brains for what else we could do to help Dad.  My brother-in-law Peter brought him food and a Diet Coke from Sonic, but he slept so long that the food got cold and the drink got watery from the ice melting.  My sister Nancy figured out how to empty the catheter bag, and we carefully administered the medications right on time.  We cut one of Dad’s shirts up the back and gently put it on him, and we kept him covered with blankets so he wouldn’t be cold.

We kept telling ourselves that we weren’t painting ourselves into a corner by deciding to sign up for support from hospice; we said to ourselves and to each other that we could always revoke.  I didn’t want anything to be for sure; looking back now, I think I had to keep the door open in my mind to keep from completely crumbling.  At the time, I kept thinking about that picture of a bird that has been caged and is being let go and below the picture it says “If you love something, set it free.” Every time that picture popped into my head, I thought NO!  Dad isn’t caged except by this monstrous cancer and the pain and anguish it’s causing him, and he doesn’t want to go!  We didn’t want him to go either – and I wasn’t sure that I could stand it if he did – but we wanted the suffering, which was so undeniable at that point, to be over for him.

As the clock moved closer to midnight on New Year’s Eve, most of our group went to spend the night at my aunt’s house nearby.  Mom went to lie down in my parents’ bed in the bedroom, and Jennifer and I planned to split the night taking care of Dad, with Peter providing back-up support when we needed help to reposition Dad in the bed or to get medicine or something to drink for him from the kitchen.  Jennifer took the first half of the night; when I tagged in for the second half, she told me that Dad was uncomfortable and anxious and that he really seemed to want someone to stay right with him.  She had pushed one of the couches over so that it was right up next to the hospital bed, but the bed was higher than the couch and so she had been lying wedged in between the couch and the bed so that she could hold Dad’s hand and be close enough to him to hear his gravelly voice without disturbing or hurting him.  Just like the New Year had slipped in unnoticed in the house, I slipped into her place on the couch as she slipped out. Dad didn’t react at the time, but a little while later, when he opened his eyes and saw me there, he did a roll-call of sorts: he asked me where every person in the family was, as if he were just checking to be sure they were all ok.

We were quiet for a while, but I could tell he wasn’t asleep.  Then, with great sadness in his voice, he threw out words that cut me to the core: “I wanted to go out like a man!”  I wanted to tell him that he wasn’t going anywhere, but I knew in my heart that I couldn’t make that promise anymore.  So I told him about something that I remembered from many years before:  I reminded him of one time when he'd had to quit in the middle of a race he was running because his calf muscles had cramped up.  He’d hobbled along the road until he couldn’t anymore.  We pulled up beside him in the car, and he got in and propped his legs up on the dashboard.  I could see that his calves were in knots, and I could see the pain in his eyes along with the shame and disappointment he'd felt as he’d told us that his body just couldn’t go any further.  That night, I looked at him lying in that hospital bed, and I could tell he was listening intently.  I wanted him to realize that he just needed to keep going for as long as he could but that, when he couldn’t do it anymore, we would understand, we would know without a doubt that he'd given it his all, we would still be fiercely proud of him, and he would not be any less of a man or worthy of anything less than complete respect.  

He took all of that in, and then he said, “I guess I’m glad you remember that story.”  

Why?” I asked hopefully. “Because it was a good lesson in knowing that even the toughest of people have limits?

No,” he said, “Because it means that nothing is wrong with your memory, so that means you don’t have a brain tumor.”

I was trying hard to keep up with his thought process, but I was struggling. “Dad!"I said. "You remember it too!  It’s just part of your story, and I know you remember it.”

He thought for a minute, and then he said very seriously, “Yes, but I don’t think I always will, or maybe I just won’t always be able to tell about it or other things that have happened.”

Maybe I wasn't sure of exactly what he was saying, or maybe I just didn't want to be sure.  “Don’t worry, Dad,” I told him, grateful for the darkness of the room that I thought was hiding my tears from him, “I’ll remember all of the stories, and I’ll tell them all.”

He dozed for a short period of time after that, and I remember lying there thinking about how when I was growing up, my mom had always said that whatever you are doing on New Year’s Day would be indicative of what you would spend a lot of time doing the rest of the year.  I closed my eyes, but even that didn’t keep the tears from falling furiously as I wished with all of my might that that would be true, that I would get to spend more time with my dad in the New Year. 

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