Measuring the Course

As far back as I can remember, one of my dad's routines after he got home from a long run was to immediately jump into the car to drive the route he had run to measure the exact distance of the course.  (This was WAY before GPS systems existed.) Most people would probably choose to sit down to rest as soon as they could after a strenuous workout, but Dad was the kind of person who couldn't stand to let grass grow under his feet.  He taught us to have honor and priorities, to set goals, to set our mind to doing things and then to follow through. WAY before Nike said it, he used to say “Just Do It” whenever he heard someone make an excuse for not doing something they should have been doing; I remember so many tough runs when he would tell me to tuck in behind him so that he could block the wind for me after he'd said “Put your head down and let's just do it.”

If Dad could have “driven the course” at the end of his life, if he could have had the opportunity to examine what he had done and the choices that he had made along the way – I wonder to what he would’ve made adjustments.  Not much, I would venture to guess, and I think that’s pretty damn remarkable.  I'm not sure there are many people in this world who would be able to say the same.

Here's a question with some Food for Thought: What would your biggest regret be if today was your last day of life, and how can you attempt to right that regret?

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last few weeks or months of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, and later she put her observations into a book called The Top Five Regrets of the Dying.  Ware writes of the clarity of vision that people often acquire towards the end of their lives and of how others can learn from their wisdom. "When questioned about any regrets they had or anything they would do differently," she says, "common themes surfaced again and again."

Here are the top five end-of-life regrets, according to Ware:

"I wish I'd had the courage to live a life true to myself, not the life others expected of me."  Looking back over the course of their lives (measuring the course), people often recognize that certain dreams they've had that have not been fulfilled, making this the most common regret of the dying.  And, as we learned when my dad got sick, by the time a person realizes that he needs to hurry to try to realize those remaining dreams, his health (and sometimes other obstacles) often restricts those goals from being attainable.

"I wish I didn't work so hard." Ware says that this was a regret shared by every male patient she cared for (and some of the women too).  What they wished they had done instead of staying late at the office so many times was to have gone to their children's ball games or school programs or to have spent more time with their spouse or other loved ones.  

"I wish I'd had the courage to express my feelings."  Ware says that many people reported that they had suppressed their emotions in order to keep peace with others.  They regretted not having told someone that they were angry with them - or that they loved them.  Sometimes this is a regret that can be addressed in the final stages of life, but many times the years that have passed since the issue began make it impossible to right on down the road.

"I wish I had stayed in touch with my friends."  In the midst of our hectic daily lives, it's easy to lose track of people who have meant so much to you and whose impact you may not realize until it's too late.  Again, sometimes when the person who is dying expresses this regret, loved ones from the past can be contacted, but many times it isn't possible.  

"I wish that I had let myself be happier."   The realization that death is near can give a person new perspective on things, and one of the things that is commonly realized is that happiness is a choice.  The clarity that often comes at this stage of life helps people to see the good in their lives much more clearly than they did before.  Other things like material goods no longer seem important.  People do want to get their financial affairs in order if possible, but it is not money or status that hold true value for them as they near the finish line - it's love, both given and received.  

Not Knowing: Grandmom's Story, Part 3

Continued from Not Knowing, Grandmom's Story Part 2

In reading the book "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying," by Maggie Callanan and Patricia Kelly, I came across many things that spoke to me in regards to what my family and I had experienced during the end of Dad's illness.  I read the book with a goal of gaining some insight and perhaps even some perspective about my dad's death, and, in the process, I began to see that there might be another reason for the recent changes in my grandmother's emotional state besides the cognitive decline associated with her medical condition.

One section of the book is about things that may be needed in order for a person to die peacefully:

"Some people realize a need for reconciliation.  Some request the removal of a barrier standing in the way of a peaceful death. Still others need particular circumstances to die peacefully - perhaps choosing the time of their death or the people who will be there.

Realizing what they need, dying people often become concerned; some communicate a tremendous urgency.  Coherent requests usually bring action.  But requests that are vague or indirect may be missed or ignored, leading to frustration, anxiety, and sometimes agitation.  If the awareness of an important need comes late - when death seems to be imminent - the person may delay or prolong the process of dying in an attempt to settle an issue or effect a final reconciliatory meeting.

A person's anxiety, agitation, or prolonged dying can be upsetting for everyone ... Often, the response to agitation is to sedate the patient ... Sedatives may help relieve agitation, but medicines alone are not the answer."

Reading these passages caused me to see some things in a new light, not just about my dad's passing but about Grandmom in her terminal condition, including the fact that our decision not to tell her about Dad's illness or his death might not be the best choice.  According to the authors, "Sometimes a family decides to withhold info about the death of someone the dying person knows.  While this is typically done out of kindness and concern, the truth often brings peace instead of discomfort or upset to the dying person."

I shared that insight with my mom and my sisters, and we decided that Grandmom needed to be told about Dad.  None of us wanted to do it, but we believed it was in her best interest and we hoped the information would help to ease her mind.  As my sister Jennifer recounts, "We were so worried that she would get the idea that he abandoned her, that he didn't want to visit her again, or maybe even that he didn't love her anymore, and of course we wanted to do anything we could to prevent her from those thoughts, which of course were absolutely untrue."  We resolved to tell her the next time one of us could go with Mom to visit her. 

Shortly after that, on the Tuesday before Dad's burial was scheduled on Saturday, Jennifer arrived at our parents' house, and she and Mom went together to see Grandmom.  Here is Jennifer's recollection of what happened when they got to the nursing home:

We rounded the corner and saw that Grandmom was sitting up in her wheelchair, which was parked just outside her bedroom door.  We greeted her, and then I kneeled down right in front of her and held both of her fragile hands in mine.  I said something like this:

"Grandmom, I want to tell you something that might make you sad, but I feel like you need to know, and  I don't want you to worry.  Bill was sick and had cancer.  He went to the best doctors and the best hospitals, but, even as strong as he was, he was not able to fight off the cancer.  He passed away and is in heaven now with God and with Roy [our grandfather, Grandmom's late husband].  He is not in any pain.  You should not worry.  Vicki and Stephanie and Nancy and I were all with him while he was sick, and we took good care of him.  He always asked about you and tried so hard to come back to see you again, but he was too sick.  You were so important to him, and he loved you so much.  We promised him that we will take care of you no matter what. Then, when God decides it is your time, you will get to go to heaven and be with Bill and Roy again."

Somehow I did it without crying -- I just felt really focused on giving Grandmom some relief and definitely did not want to cause her any additional sadness or worry about why I was sad, and so I just talked clearly and slowly and looked right into her eyes and told her.  She wasn't really able to talk much, but she definitely seemed to be listening to me, and I truly think had a look of relief and understanding on her face after she heard the news.  She did not cry.  A little while later, when we left, I hugged her again and told her I loved her and that Dad loved her and that we did not want her to worry. 

In the days that followed and over the course of the next two months, the nurses reported that she was sleeping better and was much less anxious.  She required fewer medications and wasn't crying anymore.  We like to think it was because she understood that her son loved her until he took his last breath and that, given the information about what had happened to Dad, she was able to hold onto the belief that he had gone on ahead but was waiting for her in heaven. 

To Be Continued - Part 4 of Grandmom's Story, Coming Soon

Rippling

 

From what I can tell, it seems like there are three main things that scare people about dying:  physical pain in the present (“Will it hurt?”), emotional pain related to the future (“How will my loved ones and I go on without each other?”), and emotional distress/worrying about the past (“Will I be remembered?”). 

I’m not sure about the first two.  We like to believe that we can control most or all of the physical pain with medication and human touch, and most people think that dying brings a sense of relief to the person who goes on ahead so that he or she is not worrying and does not have a sense of time or of separation from those left behind.  Neither of these two things are really something we can know for sure until it is our time to go on ahead.  The last one, though, is something that I think we can consider as we go about our daily lives.

In Irvin Yalom’s book, “Staring at the Sun: Overcoming the Fear of Death,” the author talks about something he calls “Rippling,” the concept that each of us creates - often without our conscious intent or knowledge - concentric circles of influence that may affect others for years, or even generations.  Rippling refers to leaving behind something from your life experience, some trait, some piece of wisdom, guidance, virtue, or comfort that passes on to others, and then has the possibility of then being passed on by those to still others.

  

This is Paying It Forward in every sense of the words.  It’s an opportunity we all have.  It happens when an act of kindness has been witnessed or received or even just talked about.  It happens when words of wisdom or even just plain old words are heard, considered, and repeated.  These things can alter the thoughts, behaviors, words, and perspectives of others, which can then create a chain effect. 

Kindness is something that binds human beings together, from individuals and communities to generations and civilizations.  It puts the focus on what we as a society think is right and often on what we hope would be done for us should we be in a less fortunate position ourselves.  It benefits the kindness-giver, the kindness-receiver, and those who bear witness to the kindness.  The point of true kindness is just that … to be kind.  It carries on, long afterwards, and its impact, like that of people who regularly practice it, can be far reaching.

For what do most of us want to be remembered after we go on ahead?  Probably not something like being a good employee, or keeping a tidy house, or have a cool car, or wearing fashionable clothes – probably, hopefully, we want to be remembered for our positive actions, particularly those actions that have positively affected other people.  And when that remembering occurs, that’s Rippling.  And that is proof that actions and words live on long after we do, in the way that the words of our parents somehow end up coming out of our own mouths, in the stories told about us by our children to their children, in the things we have done that our loved ones talk about or think about because they think those things were funny/brave/smart, in the perspective of those who have known us and in those who have known those who have known us. 

When my kids were little, someone I knew asked me once what I wanted them to “be” when they grow up.  I’m sure she meant what did I want for them to have for a career and that she expected me to say something like a teacher, a doctor, or an architect.  Or maybe she thought I’d say that I wanted them to be rich and/or famous.  Regardless, though, what I said was this: “I want them to be kind.” 

She thought for a minute and then she said, “Well, be careful with that, because you don’t want them to always put others in front of themselves.  You don’t want them to change who they are to suit others.”

I think she had kindness confused with niceness.  Kindness is the quality of being friendly, generous, and considerate, and, to her first point, it can include how one treats oneself as well as how one treats others.  Niceness is being pleasant, agreeable, and satisfactory.   I don’t think it’s always the right choice to be nice, but I do think it’s always best to be kind, to ourselves and to others.  In extreme cases, kindness may mean just considering someone else’s perspective, background, or circumstances; it may mean being a little less harsh in our opinions or a little more cautious in jumping to conclusions.  It may simply mean opening ourselves up to the possibility of having our perspective changed by thinking about someone else’s situation.  That can’t be wrong.  It allows us to take what we know, what we believe, and the experiences of all that has impacted us in our lives and use it as a kind of Kaleidoscope or Viewfinder, something we look through to compose, and in many cases to focus, on the Big Picture. 

We are altered by those we love and those who love us.  We have been changed by many people whom we know and whom we have known.  In fact, we have been impacted in some way by everyone who has crossed our paths.  And crossing paths with us in turn affects others; it is our form of Immortality.  Our choices determine whether that impact is for the better or for the worse, and that is something that we can work on every day of our lives, something we can control in this out-of-control world.

Rippling is not a theory; each person undoubtedly lives on in the effects of our actions, words, thoughts, and perspective, in the memories of others and even in cases when our impact isn’t linked to a memory but to the Ripples we have generated.  Whether we intend to have an effect or not, those Ripples are created, and so the answer to the question we are all likely to ask when our time to go on ahead comes is a resounding YES – we will be remembered. We will have left a mark.  There will be a Rippling as a result of our having been here.  Each of us will have an impact of some sort.  We can do what we think is right, we can practice kindness or whatever else we choose to do, and then we can hope that what we leave behind is for the good and trust that it will then be passed on to others and then others. 

"Be kind whenever possible - and it's always possible." ~Dalai Lama

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."