What Grief Can Look and Feel Like

A friend of mine recently lost her father, and she has asked me about what’s “normal” in grief.  Hmmmm.  First, I will say that I am perhaps not the right person to ask that question of, as I am not only unsure about the answer but also because I think that even my speculation about the answer may be more confusing that it is right.  And next I will say that one of the things I do know about grief is that there really isn’t a “normal” to it. 

Through the reaching out of others with whom I have connected through this blog, I have begun to see that, although grief may have some universal similarities to it, it is not experienced in the same way by any two people.  There’s not a right or a wrong way to do it.  Going through the grieving process often seems to make people feel like they are feeling abnormal – but that’s normal, I think.  Grief is just grief, and, in spite of the things it may cause people to do or say or think or feel, it doesn’t mean that the person who is grieving is flawed, or sick, or selfish, or crazy, or depressed. 

 Grief can look like thousand different things, mostly painful and confusing but some inspiring and strengthening, if one chooses to let them be. I think that the idea of death and dying, the difficulty of grasping such a HUGE concept, as well as the questions that come along with it like WHY and WHAT NEXT sometimes makes our brains think things we wouldn’t ordinarily think.  One thing I have learned by putting my story out there publicly is that whatever’s going on in one’s head in the midst of the grief is very likely to be something someone else has/is also thinking or feeling; maybe knowing that will help someone else not feel quite as alone as they walk the road of grief and mourning. 

Lots of times grief feels like walking in a fog, without any direction at all.  It looks like breaking down into tears in the middle of driving to work or making dinner or taking a shower.  It looks like reading the same passage over and over again and then saying “To hell with it” when the words on the page still don’t seem to make sense.  It looks like waking up in the middle of the night and forgetting what has happened just for a second or two, and then remembering and feeling the slam of the sadness all over again.  Sometimes it feels like a force making you want to stay in bed – even if that means missing a meal or a party or work or the entire holiday season.  Sometimes it feels like a force that won't let you sleep - or that fill the sleep that does come with nightmares and sadness.

Grief can make it feel as if the world is spinning, it can make things look fuzzy, and it can make your legs feel heavy like cement and your heart feel broken and raw.  It can make you feel overly bold or brave … or it can make you feel small and terrified, all the time.  It can sometimes make a simple task or decision feel like climbing a mountain.  It can look like staring into space; it can make you feel like you can’t function, and – here’s the brutal truth – it can make you not really care if you can’t.

Grief can look like laughter – or rage – or avoidance – or more tears that you ever thought your body could manufacture.  It can make the world look like a minefield, full of danger.  It can feel like walking into a room full of strangers who have no idea what you’re thinking or feeling or what you’ve been through – and it can also feel like being all alone in a completely empty room, full of only coldness and hard edges and with an echo.  It can feel like holding onto a secret that has been locked away or supporting a boulder so big that it’s incomprehensible to think about ever doing anything besides struggling under its weight.  It can feel like going on a hunt, looking for a glimpse of any good at all in the world, a desperate search and an endless list of questions and worries and fears.

It can look like an endless road, and, in a way, that’s what I think it is, and I think maybe the secret to getting through it is knowing that there is no secret to getting through it. 

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!!

Follow-up on Foster the Cat

One question I get asked pretty often by people who've read my family's story is this: What ever happened to Foster the cat?  

As I've mentioned, my mom is not a big fan of felines.  We had various pet cats while I was growing up and my parents had a cat named Sport who had passed away a year or so before my dad got sick, but Dad was always more the cat person between the two of them.  

I think I can speak for my mom when I say that there were no regrets about having gotten a cat for my dad after he got out of rehab; his Bucket List had been revised in such a drastic way when he got sick, and there weren't a lot of things on his list during that time that he could do because of the impairments that came from the tumor and because of the treatment he was undergoing.  Getting him a kitten was one of the few requests we could fulfill for him, and we were happy that his wish was able to be granted.  

Dad loved having Foster; in fact, he said that getting Foster was the "second best thing" that had happened to him since he'd gotten sick. ("The first best is having my kids and my grandkids around more," he said.)  He and Foster napped together and hung out together, and, when they weren't doing that, Dad enjoyed watching Foster play.

Unfortunately, though, Dad didn't get better with the treatments; in fact, he got worse, and he was only around for about six weeks after Foster joined the family.  

Mom didn't want a cat.  She had two greyhounds, one of whom was elderly and in poor health, and Foster tormented both of them.  He constantly tried to escape whenever an exterior door to the house was opened, and Mom didn't want to have to worry about him getting lost or hurt outside.  With Dad not around to take pleasure in Foster anymore, we agreed we needed to find a new home for the cat.

But this wasn't just any cat - it was Dad's cat - and, other than Dad's car, it was the first time we had to make a decision of what to do something of his - something he had loved, even if just for a short time.  Something he should still be around to love.  Ouch.

So we didn't want to let just anybody have him; ideally, we wanted him to go to a home with children to play with and to a family that would report back to us periodically about how he was doing.  I felt like it would be like losing a part of Dad if we lost track of Foster, and all of us were already battling against such sadness that I didn't want one more loss to add to the mix.

A couple of my parents' friends offered to take Foster when they heard about our situation, but neither had children and we thought Foster would be happier if he had some kids to play with.  Both of my sisters and I considered taking him, but all three of us already had two cats each and we weren't sure the younger, more energetic Foster would fit in.  

Taking a cat nap in a gift basket

Six weeks after my dad went on ahead, my siblings and I and our spouses and children all gathered again at my parents' house; because my dad had expressed his desire to be cremated and the cremation couldn't be completed before some of the family needed to leave town the month before, we had planned the memorial celebration for a few days after his death and the burial several weeks later so we could all make it back for the service.

That weekend, we talked about what would be best for Foster, and, to our delight, my brother and his wife offered to take him back with them and their two children when they returned a few days later to Philadelphia.  It seemed like the perfect solution; they already had one cat but thought she and Foster would work out any differences in time as needed.  

We were apprehensive about how Foster would behave on the plane ride, but they reported that he did fine. (Don't tell the airline, but he even got to get out of the carrier and sit in my niece's lap for awhile on the flight!)  

Since then, he has adjusted to living with them, and he and their first cat Greta have called a truce.  I know my dad would be glad that his cat has such a great life, playing with my niece and my nephew and going inside and outside as often as he wants, and we are grateful that he ended up in such a good place and that we get to hear funny Foster stories so often.  

At home with my niece, who is showing
him a photo of my parents

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