The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

Why Brain Cancer is So Lethal

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  “Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price.”  Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named

Bernard Stanley"Acker" Bilk who died earlier this week. 

I Think The Myth Is A Myth

I spent a lot of time on the road during the ten weeks that my dad was sick, driving between my house and my parents' house and between my house and the hospital or the rehab center.  During much of the time, I listened to talk shows on radio stations like "NYU Docs."  Early one morning when I was on my way back home after having spent the night with my dad in the rehab center, I happened upon a talk show on the topic of the emotional aspects associated with aging.  The conversation broached the subject of terminal illness, and, before I really realized what I was doing, I had called in to the show and was on the air.  

"Stephanie from Tennessee is interested in finding out how to help her father who has recently been diagnosed with brain cancer," the host said as a way of introduction, and somehow I found myself on the air telling the short version of my dad's illness and asking for advice on how to address the emotional issues that were coming along with the changes and the challenges he was experiencing.  Right away, the host started talking about how we should be helping my dad to identify the legacy that he would be leaving behind.  As I listened to her talk, I felt a burning sensation in my gut for which I could not immediately identify the source; as the host made a few more statements and then closed the conversation, though, it hit me: she thought I was asking how to help him cope with his impending death.  I wanted to call back to tell her that my question was aimed at helping him have the best life he could, not the best death, but at that point I was crying so hard I knew my words would not be able to be understood.  I wasn't nearly ready to go to the depths of that subject yet, not for even a second, not on any level.  

Several days later I thought back to the words of the radio show host and thought that maybe I should remind my dad about some of the important things that he had done in his life so far - and also talk to him about his goals for the future related to accomplishment.  We'd had lots of conversations since he'd gotten sick about things he wanted to do (his Revised Bucket List), but maybe it was a good idea to broach the subject of what he felt he needed to get done, in whatever time he had left.

Looking back, that seems kind of ridiculous; knowing my dad as I did, I should have known that he would see that type of thinking as way too philosophical.  He was much more of the "just do it" mentality than the "talk about it/plan it out" type.  And he would probably never have been done; he would never have allowed himself to run out of items on his "to-do" list.  I can not at all picture him kicked back, thinking, "Well, I've done all that needs to be done in life; I'm just going to relax and do nothing for the rest of the time I have."  There would always have been one more challenge that he would have assigned to himself; that's just who he was.

The thing that made me remember back to that radio show and the conversations and thoughts that followed was an article that I read this week called The Myth of Finding Your Purpose.  I was expecting the article, written by a woman who had gone through cancer treatment, to be thought-provoking, and it was - just not in the way that I expected.

"Your purpose has nothing to do with what you do," the author says, and she goes on to explain that she thinks one's life purpose "is about discovering and nurturing who you truly are, to know and to love yourself at the deepest level and to guide yourself back home when you lose your way."  Reading these words, I feel that same burning sensation in my gut that I felt from the response of the talk show host on my interstate drive that day nearly three years ago. This time I can identify the source of that burning easily, though: it's anger, annoyance, and aggravation.  It's a fervent desire to dispute what she is saying, because I feel to the depth of my being that she is wrong.  She is wrong.

The purpose of life is connection; it's doing good, in whatever way and on whatever level works for each person.  It's erring on the side of kindness; it's experiencing gratitude; and it's doing what we can to leave the world a little better place when it's our time to go on ahead.  

The point she makes about the danger of only being able to feel worthy based on the feedback from others isn't new: that's called codependence.  Reading back through her article makes me want to get out my red pen and write in my own comments and corrections: for example, when she says, "When our purpose is external, we may never find it. If we tie our purpose or meaning to our vocation, goal or an activity, we're more than likely setting ourselves up for suffering down the line," I want to draw a little caret symbol in between the words "is" and "external" in the first sentence and insert the word "only," and I want to do the same thing in between the words "tie" and "our" in the second sentence and insert the words "all of."  While I'm at it, I'd like to do the same thing just before the word "goal" and squeeze in the words "or to the achievement of a specific" so that the declaration becomes "When our purpose is [only] external, we may never find it. If we tie [all of] our purpose or meaning to our vocation, [or to the achievement of a specific] goal or an activity, we're more than likely setting ourselves up for suffering down the line."  My point is this: despite the fact that people are going to disappoint us, that there will be times when we will feel that our efforts have gone unrecognized, and that sometimes we won't be able to do what we set out to do, in my opinion we need to do our best to, well, do our best to leave a positive mark - yes, an external one, because when we're gone, that's all that will be left of us.

Reading the rest of the article really only exasperates me even more.  To me, the platitudinal (not sure that's a real word, but if not it should be) bullet points about mindfulness of one's self, releasing all shame, and elevating one's own energy sound empty, or made-up, or both.  "To remember your holiness and treat yourself accordingly ... "  REALLY??  If I were buying what she's selling, I'd spend the rest of my days sipping a cold drink on a sunny beach and nothing more.  I'd be full of inter-connectness with myself, all right, but that's about it.

And to her last point: "What if your purpose is to bear witness to your suffering?"  As my dad would sometimes say in a Scooby Do voice, "HUH??" 

CLICK HERE FOR THE SOUND EFFECT I'M TALKING ABOUT!

Unlike the author of this article, I don't think that suffering is "essential;" I think it's most likely unavoidable, but those things aren't the same.  As I've said before, my family didn't need my dad to have to suffer in order to appreciate our lives or to love each other fiercely; we already had that going.  I'm not disputing her point that a person who feels fulfilled and loved is much more likely to be in a position to give back to others, but I just can't agree that a person's purpose is "about finding and nurturing yourself ... not an external ... accomplishment ... even if that ... is the most important discovery of all time."  I don't like the way she refers to some of the people she's met ("brilliant and effective activists," at that) as "messes;" my god, aren't we all in some way or another??  

As anyone who has read pretty much any of this blog or talked to me for any amount of time about perspective probably knows, I don't dispute the fact that inner peace is an important goal, one that can often be reached through having a certain perspective and by making choices about how our circumstances are viewed; I just don't think it's the most important goal in life, and I certainly don't think it's my only true life purpose.

For more food for thought, here's a video of a presentation by a speaker I think is very insightful and interesting:

Dr. Brené Brown at TEDxHouston

There's No Place Like Hope

At about the same time that my dad was diagnosed with terminal cancer, one of his best friends was also diagnosed with cancer.  His friend had to go through surgery and chemo during the same weeks that Dad did.  That friend was so sick that he couldn't attend Dad's memorial service after Dad died.  And that friend has been battling his disease ever since, dealing with more surgeries, more chemo, more complications, more pain.

I know it must have been so hard for his friend to miss the memorial; I'm sure it must have been really tough for him to assimilate what had happened to my dad over a relatively short amount of time, during which my dad and his friend did not have contact with each other because they were both so sick.  My dad, in fact, was never told of his friend's illness; Dad was having such trouble grasping the facts of and coping with his own diagnosis, and, as I've mentioned before in regards to my grandmother's declining health, we felt that it would have been unbearable for him to hear about serious issues befalling someone he loved, especially when he was powerless to help that person.

My dad and his best friend Bob, many years ago, just before the Boston Marathon

Recently, I emailed my dad's friend to let him know that I have been thinking about him.  In his response, he said something that gave me pause: he said, "I have a chance, and I guess that's all you can really ask for in this life."

I think he's right; as long as a person has a chance, as long as they have hope, they can look forward to something better, and sometimes that's all a person needs to keep going.  

The dictionary says that hope means "to expect with confidence."  I think there's more to it than that, though.  I think hope is somehow genetically woven into our beings so that we can survive, even through the roughest of times. We are fueled and inspired by stories that bring us hope: hope and trust in mankind, hope that other people will help us when we need help, hope that tomorrow will be a better day.  We say that it gives us hope to hear about others who have succeeded or who have had something good happen to them - and we are so intrigued and motivated by the exchange of hope that there is even a website called Gives Me Hope where people can submit their thoughts about things that have happened that inspire them to hope and that allow them to believe in the potential.

For a long time after my dad died, I felt foolish when I thought back to the way we were so hopeful that he would beat the odds.  I felt like I'd somehow been tricked or that I'd misinterpreted the information in such a major way that I could never again trust that what I was seeing real or true.  Looking back at my Facebook posts from during the time when Dad was sick and seeing things I'd said like "starting to feel at least a little hopeful," I felt ashamed at the way I'd stepped out of character and had let my emotions overrule my logic.  I felt like the hope that I had clung to during Dad's illness had been unfounded, irrational, desperate, even ridiculous, but, over the course of the last couple of years, the words of my dad's friend and a few other things that have happened have caused me to start thinking of hope in a totally different way.

While my dad was sick and in the months that followed his death, I was active on a couple of websites for brain cancer survivors and their families.  I posted and commented and read the posts and comments by others about various treatments for GBM and other types of brain cancers, and through that forum I made contact with some people who had outlasted the prognosis of their disease, a few of whom had been diagnosed with GBM and had not only made it past the predicted two-year "maximum" survival time but for years or even decades longer.  While my dad was sick, I was desperate to find out what these people's secret to survival was so that I could find a way to try to make that same set of circumstances happen for Dad.  After he died, I still felt a need to know: What had these people done that we hadn't?  How had they made it, when Dad couldn't?  I'm still signed up on one of those chat boards, Cancer Compass; I don't post anymore, but I always read the new comments about long-term survival of GBM.  It might seem like I would see that as a point of sadness, or frustration, or injustice, but for me it serves more as a point of scientific curiosity - and of hope.  

In the summer after my dad died, a friend of mine who had been combatting cancer found out that her cancer had relapsed again and that she needed radiation treatment.  I offered to drive her to some of her radiation appointments.  The hospital where she had to go daily for several weeks was about a 45-minute drive from her house, and she and I commented several times during those weeks and afterwards that we had enjoyed having that time to talk to each other on the way to and from the appointments.  

I admired this friend a lot; I had always thought that she was full of great advice and, since she'd been diagnosed with cancer about five years before, of tenacity and true grit.  She was one of those people who is so easy to talk to, a great listener, someone whom I'd always felt like I wish I'd had more time with so I could get to know better.  On one of our commutes that summer, she and I had a conversation about how we both had a hard time asking for and accepting help from others.  I commented that I was much better at giving help than at receiving it, and my friend thought for a minute and then said, "I guess in a way it's helpful to let someone help you, if you think about it," words on which I would end up reflecting back countless times since then and that later inspired a perspective shift and this post about my perspective about gratitude, blessings, and philanthropy: A Gift Received.

In another conversation during one of our drives, I asked her and she told me about the timeline of her illness.  She filled me in on details that I hadn't known from along the way, including the fact that when she was first diagnosed she had been told that her cancer wasn't curable.  "How do you deal with that?" I asked her, and she responded in a voice that conveyed unlimited courage and conviction, "You just do.  For me, I just keep hoping and believing that if I can stick around long enough, somebody will find a cure. I am fighting to stay alive not because I fear death, but because I love life.  I am thankful for every day that I have in this life, but at the same time I want more, and I hope that that's what I will be given."  

Through those words and through the words of my dad's friend and those of other long-term survivors, I've started thinking of hope as good, necessary, supportive, even power-inducing; I guess my perspective about hope had changed so much that, despite what actually happened with my dad, I now don't regret carrying that hope.  I now deeply believe that there’s no such thing as false hope: I think that all hope is valid, even for people who have been given an awful prognosis like we were, even when hope would no longer appear to be sensible.  Because as far as I'm concerned, sensibility went out the window the second we heard that my dad had brain cancer. 

"I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death." ~Robert Fulghum

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 dad; written 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!!