Saturday, February 2, 2013

Exercises in Perspective

I talk a lot about perspective, but I think about it even more often.  It's one of the few things that keeps me from coming apart at the seams during the Mad Tea Party of life.  

I like to read about things that give me perspective and about the impact that different people and experiences have had on others.  One thing I have realized in thinking about the legacy that my dad left behind is that little things can make a big difference - little things we say, little things we do, and even little things we think.  Each of these can serve to shape each of us into a person with a bigger heart, a better outlook, and a broader perspective.  As Mother Teresa once said, "None of us, including me, ever do great things.  But we can all do small things, with great love, and together we can do something wonderful."

In keeping with that theme, I have decided to compile of list of things that can bring perspective and post those ideas periodically as challenges to myself and to others.  Some will be fun, some will be thought-provoking, some will be service oriented or otherwise actionable.  All will be targeted at contributing to the perspective of anyone who participates.

Here's the first one:

Let someone know the impact he or she has had on your life.

This idea came to me from a message that I got from a person who knew my dad many years ago.  The person had heard that my dad was sick but didn't know that he had died. In reading some of the entries in this blog, he recognized himself as one of the guys in the story that I told here:

When he read that story, he said, "I tell the story of that race in Mississippi all the time to people. I learned a life lesson that day. A great story was told through his life. I can recall all those runs and races and his smile that seemed too broad for his little body."

When I told him that Dad had gone on ahead, he expressed sadness and regret that he had not been able to tell my dad how he had been impacted by him.  He said, "I wanted to tell him how his life story connected to mine. He was largely responsible for my love of running and in many ways responsible for my future."

Thinking about his words and the words he said he wished he had told my dad made he think about the fact that there are many people in my life to whom I haven't reached out in some way over the years to let them know how they influenced me. 
What he said made me realize that end-of-life regrets are not only for people who are nearing the end but also for those left behind who haven't delivered a message that we wish we had.  

In doing this first Exercise in Perspective, you may choose to communicate with a person from your past or from your present, someone younger or older, someone who served as a mentor or a teacher to you or just a person who caused you to think or act differently than you might have otherwise.  Your message can be delivered in writing or verbally, and it can even be as basic as something like, "Thank you; knowing you has helped make me the person I am today."  The only criterion to this challenge is that you reach out to a person who has left a mark on you in some way, and the point is this: don't wait.  Do it now; the person to whom you deliver your message will be glad, and so will you.

Tuesday, January 29, 2013

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.  

Sunday, January 27, 2013

Open to Hope

Last fall, a blog entry that I wrote got published on a website called Open to Hope.

Click HERE to read the article.

A couple of days ago, I received an email from someone who had read the entry and had left the following comment:

I was so touched by your article and the statements from the other readers.  I am writing because my husband has a brain tumor, glioblastoma, perhaps what your father had.  This is heartbreaking for our twins age 19, away at college, and I am wondering if there are some things we should be doing now to prepare us for the special occasions, holidays and even just the really sad times when he is no longer here.  He is still fairly lucid and would be willing to do something to make it less painful for all of us but I would need to help him as his vision is very poor and he can no longer write legibly or use the computer.  We have come up with some gifts to give the kids from him when they graduate from college, get married have children etc, but there are so many other times in between the highlights of their life when they will miss them.  We had him with us this Xmas but it is unlikely he will be here for the next one.  We still have some time and I don't want to regret missing opportunities while we still have him with us. If you have any suggestions I would really appreciate it.  Thank you.

Wow, that's a tough situation and a difficult question to answer.  Knowing what a tough experience her family is having to go through is heartbreaking; it brings back so many memories and brings forth so many emotions from my own family's experience.  I want to help, but I'm far from an expert on the subject of coping; all I can do is to offer suggestions based on my personal experience and my perspective at this point on the timeline.  

I will tell her that my dad did have the same kind of brain cancer, glioblastoma, or "GBM" for short, an awful combination of three letters that brings devastation to people in a matter of seconds.  I will say that what I've figured out since my dad's death is that it is possible to pull out the silver linings of a terminal diagnosis; in no way does doing so diminish the pain and the hardship of going through it, but it does allow for opportunities to do some things that are very valuable, things like making memories, even just in the midst of everyday things, so that you can hold onto those (hoarding memories, as I have called it), things like helping the person who is sick tie up loose ends, and things like saying things such as I love you and I am a better person for having known you and thank you - and, eventually, goodbye.

A few books that may be of use in such a situation are Dying Well by Ira Byock, Final Gifts by Maggie Callanan and Patricia Kelley, and On Death and Dying by Elisabeth Kubler Ross.  I wish I'd read them in time to help my dadwritten from a perspective of those who have done hospice work for decades, these books are full of information about what often happens when a terminal diagnosis is handed down.  

Something that I was surprised to learn after my dad's death is that there is a natural process that occurs as an individual nears death, and, while each person is unique, the dying process is nearly universal.  Many people find it helpful to know what to expect during a typical dying process. She can tell her husband that she is willing to discuss any concerns he may have or that, if he would rather have those conversations with someone else, she will find a person for him to talk to.  My dad asked me what I thought it was like to die, and, when I answered him, I tried to focus my answer on what I thought his main fears about the process were, which, for him, were related to pain and worries he had about leaving my mother and my siblings and me behind.  I don't know if what I said was right or not; I just knew that his distress needed to be addressed.  I can't imagine how scary it must be to have all those fears about dying and, even more so, to feel like you might inflict even more distress on your loved ones by voicing those fears.

But more than how to handle the logistics of her situation and the anticipatory grief and the emotions that come along with it in such a situation, this person is really asking two things: first, how can she help her husband emotionally as he prepares to leave this world, and, second, how can she help her children and herself, especially with regards to after he is gone?

First, let me say that, while the diagnosis of both her husband and my dad were the same, my family's situation was different from what it sounds like hers is.  My dad was "lucid," in that he could speak clearly and could understand the words that were being said to him, but he had fairly severe problems with his short-term memory and his attention span.  He was told by doctors that the prognosis was two years at best, but he was also told by them (and by us) that it wasn't unreasonable to believe that he could beat those odds, at least to buy more time.  There was a lot of denial by all of us, I think by the medical team too, about the fact that his time might actually be as limited as that general 1-2 year time frame, so much so that, coupled with the frantic pattern of caring for him 24 hours a day and the decline that happened so much faster than anyone would have ever believed, we didn't think much about those two questions while he was sick.  I wish we had; I wish we had had the time to figure some of that out.  All that to say, though, that what I have to offer in terms of ideas to address her concerns is from my hindsight type of perspective, not from what we actually did.  What we did do related to those two areas happened quite by accident.

I think it would be a good idea for her to talk to her husband about what his goals are from this point forward.  Like I've said in telling the story about my dad's illness, though, that Bucket List type of discussion is probably going be vastly different than it would be for a healthy person; the best you can do in such a situation is to come up with a Modified Bucket List to work towards.  Like my dad did, her husband is probably having to deal with medication schedules, doctor's appointments, and possibly some treatment plans.  Hopefully, though, unlike my dad, he has had less of a change in his physical abilities and his cognitive abilities, which may allow him to do some things like travel or even just socialize with friends and family without it being a major source of stress or a logistical impossibilty. Each person's goals are likely to be different, but clarifying them and putting them into some sort of order by priority and feasibility are important in any case.

There’s such a feeling of urgency when we are aware that time is short, and it can be overwhelming and stressful for a caregiver to feel like you need to fulfill every desire and help your loved one cross off everything on his to-do list in that limited time.  It's natural to want to make every day into a special event, but, as I have learned, very often the wishes of those who are very ill are much more simple than big vacations and major events.  I've heard of people hoping to be able to go to a family reunion, or to go camping, or to go horseback riding, or, like my dad, to go to a beach or even just to see a movie.  Sometimes even things like that require planning, and sometimes family members have to ask for help from others to make these things happen, but thinking in terms of lower key type of arrangements can give everyone something to look forward to and can serve as an opportunity for memories to be created.

That said, though, so many special memories can be created in everyday moments that sometimes it isn't necessary to plan something like a trip or a Bucket List type of adventure.  I have found that I am comforted by thinking back on the times my dad and I just sat around talking about the past or current events or funny things during the time he was sick; sometimes it's ok just to sit in silence and hold the person's hand too.  The everyday moments can be just as important as the big-deal moments; many times, just being present with the person who is sick can be comforting and meaningful for both of you.

In my dad's case, when he first got sick, we tried to view a day as A GOOD DAY as one during which he was able to do at least one thing he NEEDED to do and one thing he WANTED to do; later, when he was even sicker, in some ways I think we struggled to consider a day as a good day when he didn't have an overwhelming amount of pain (mostly headaches) and/or anxiety.  As we learned in a crash course, it's all about perspective.

People often seem to think that talking to someone with a catastrophic illness about their diagnosis or their impending death will upset that person more; however, from what I've been told and from what I've read, the opposite is actually true.  In fact, sometimes the person who is sick may be hesitant to bring up difficult topics like those with their family members for fear of upsetting their loved ones more.  But there are bound to be questions, and thoughts, and emotions that need to be shared, and sometimes a certain degree of peace can come from talking about those hard things or to admitting one's feelings about what is going on and what's going to happen.  The books I mentioned address how to broach those tough subjects in the most compassionate ways.  

In his book The Four Things That Matter Most, Dr. Ira Byock discusses what most people define as being the most important things to say before they die: "Thank you," "I forgive you," "Will you forgive me?" and "I love you." Two of the four phrases are about forgiveness, emphasizing how important it is to offer and receive it before we die.

I have heard that men and women have different types of end of life concerns.  Men seem to focus on finances ("Have I provided for my family adequately?") and things that are physically left undone at work and/or at home.  This was certainly true for my dad, and it caused him a lot of anxiety during the time that he was sick that only got worse as his condition did the same.  Women, on the other hand, seem to tend to worry about the emotions of their loved ones and the logistics of things, especially those things that they have taken care of for their loved ones, like gift giving and planning events.  I wish we had been able to address my dad's concerns directly in such a way that he could have understood and been comforted by that information, and I hope that is something that this woman is able to accomplish in her situation.

I love the idea of helping the person who is sick to buy gifts for people to be given at certain points in the future when he is not likely to be around.  I think that is likely to be therapeutic for both the giver and the receiver, and it's a very touching gesture that will comfort those left behind.

I also think she should have conversations with her husband about his goals for his legacy.  I think most people want to leave some sort of legacy in life; we all want to be remembered because being remembered means that our lives had meaning and significance to someone other than ourselves.  Maybe it's something he accomplished professionally, maybe it's something he did that will continue to impact people long after he's gone, maybe it's a character trait that he has that others can try to emulate, or maybe it's something else that he will be remembered for.  She should talk to him about how his legacy will be carried on in the future, even by people he doesn't know who have come into contact with the people who have known him (the "rippling" concept).  I suggest that she ask others in his life to tell stories about things they enjoyed doing with him, things they admire about him, things they will remember, and/or how he has affected them; as we found out after my dad died from comments made by many people who had known him, sometimes one's legacy is different than they or people who knew them in a different context may think.

I've heard that many people who are at the end of their lives tend to want to talk about their regrets, accomplishments, hopes, and dreams.  Doing a life review is a way to bring closure to the person who is ill, and it can also serve as a legacy of life to the person's loved ones.  There are several ways this can be recorded for posterity: 

*A MEMORY BOOK can be created in one or more different formats.  A simple photo album or a more modern version created online through Shutterfly or a similar website can be a wonderful memento.  A scrapbook can be made by using photos and other items like ticket stubs, menus from special dinners, or personal notes.  A book of memories can be completed by filling in information in a published book like THIS ONE or just by jotting down or dictating memories, thoughts, and ideas in a notebook a little bit at a time. 

*AUDIO TAPES can be a wonderful thing to leave to loved ones and may be able to be produced more easily and more privately than dictating for someone else to write down messages.  Loved ones often miss hearing the voices of their departed friends and family members.  By recording tapes for those they leave behind, terminally ill patients can know that whenever their survivors are missing them, they can simply pop in a tape and hear their voices.  I've heard of people who have recorded themselves reading favourite bedtime stories, singing lullabies, or simply talking for their children or grandchildren (or future grandchildren) to listen to later.  Tapes can be made for friends and family members, individualizing the messages for each recipient.  One thing I will say is that even though we didn't record my dad while he was sick, we have some recordings of his voice from before he got sick that are absolutely priceless to us.  

*VIDEOTAPES may be the ultimate way for the terminally ill to leave their loved ones with little pieces of themselves. Similar to the process for creating audio tapes, a video camera can be set up and turned on for the person who is ill and then the person can be given an opportunity to have his message delivered in private.  Again, different videos can be produced for each loved one, with the emphasis being on making them as personal as possible.  Parents who know that they will miss important milestones in their children’s lives can prepare videos offering the advice they had hoped to deliver in person. For example, a dying parent may prepare videos of themselves talking to their children about the importance education, being true to yourself, finding lasting love, or prioritizing the important things in life. More than anything, these videos should be used for the terminally ill to express themselves and the feelings that they have for those they will be leaving behind.  

*WRITTEN LETTERS (or those that have been dictated and then written on the person's behalf) can be used to offer kind words, to share advice, to provide encouragement, or simply to declare one's love for another person. Such letters are sure to be treasured and kept as special remembrances of a life that ended too soon.

It has been said that as long as one person holds memories of someone, they are not really gone. Losing a close friend or family member is one of life’s difficult realities, but most people keep their departed loved ones forever near by thinking back over the times that they shared. Creating tangible memorabilia can reinforce those memories, helping survivors to keep loved ones a part of their lives.

One more thing I'll share is a link to a website that has great info about how to cope with end-of-life issues for people with brain tumors:  BRAIN TUMOR HOSPICE.

In closing, I will say to the woman that, when faced with the most difficult situation that she has probably ever faced, all she can do is to try her best.  Accept help from others; ask for help when needed.  Keep a Notebook of thoughts, questions, appointments, inspirational quotes, anything that might be something she needs quick access to and/or that might be good to remember in the future.  Take photos of your husband along the way, with other people and by himself, maybe even of things like his hands or him facing away from the camera, to create memories in a visual format.  Make an effort to take note of everyday joys, don't be afraid to just sit silently and enjoy each other's presence, and cut yourself some slack and take a break on a regular basis.   

I am going to wait a couple of days before responding directly to her message, and I'd love to get feedback from others who have opinions about the subject of what else she may want to consider doing.  Please comment below if you have any ideas on anything else I should add!!