Finding the Hero in the Dying

When someone is fighting cancer, they are lauded as a "Warrior."   Search the web and you can find sites like Cancer Warrior.  We congratulate people fighting cancer for being warriors and being strong -- we call them heroes for fighting the good fight. None of this is bad as it gives the cancer patient hope and encouragement.

What happens though when the patient decides they are done fighting and want to discontinue treatment? Are they no longer a hero? If they aren't a warrior or fighter or hero, what are they?  Are they a loser?  Someone who has given up and lost the fight?

Frequently the patient feels as if they are letting down their family by stopping the fight.   They feel their family and friends do not want them to quit fighting and they owe them because they have given so much of their time to care for them.   The patient's family and friends feel as if they need to make excuses about why the patient has "given up."

I think we need to change our feeling towards stopping the fight. We need to find the hero in stopping aggressive treatment and starting palliative or hospice care.  We need to ensure that the person who is living their life, well aware they are dying, know they are just as much a hero as when they were fighting their cancer.

What is courage? It is defined as the ability and willingness to confront fear, pain, danger, uncertainty, or intimidation.

"Courage, above all things, is the first quality of a warrior."
– Karl Van Clausewitz

I can't think of anything that takes more courage than embracing your last days on earth and confronting the fact that you are dying and most likely dying soon.   Being able to say "no thank you" to additional invasive treatments and instead focusing on LIVING the last days of your life with your family and friends, doing the things you want, hopefully outside the confines of the hospital.  That is courage and we need to celebrate that courage.

The courage of someone embracing their last days does not negate the courage of someone fighting their disease.  One patient's path is not right and one is not wrong.  Both patients are heroes and warriors and courageous.

One of the most difficult things I had to do as a caregiver of my mother, and probably will remain one of the most difficult things I will EVER have to do as human, was to say to her that it was okay to stop the treatment... that I had called Hospice to see what her options were and maybe she should talk to them as well.   That maybe it was time to leave the hospital and come home.  I felt as if I was letting her down and giving up on her.   That I WANTED her to die.

Of course, me wanting her to die was the furthest thing from my mind.  I wanted her to stop hurting.  I didn't want to see her lying in a hospital bed, struggling to breathe.  I didn't want to see her shrinking away with tubes and beeping monitors surrounding her.  I wanted to see her at home surrounded by her grandchildren, snuggling and reading them stories.

What made it hard was that I knew giving up on the treatments meant we were accepting that she was going to die.    It was what we all knew.. the proverbial "elephant in the room" but no one wanted to recognize the elephant.  Dammit, if we kept at the treatments, surely something would work.  There was always one more study or one more clinical trial.  Or maybe we just hadn't seen the right doctor.  Surely by calling Hospice I was declaring to the world and to her that I wanted my mother to die.

There were not many times I cried when caring for my mother -- mostly because I had to be strong in caring for her and there just wasn't time for a pity party.   This was not one of those times where I was strong.  After the conversation I cried with wracking gut wrenching, nearly vomiting sobs.  It was admitting to her and to me and to everyone I knew that she was going to die.    Its been almost two years since she passed and thinking about that moment in order to get it to paper is bringing the tears again.

The most amazing thing happened though.   She was happy.   After the conversation, I remember her sitting up straighter and looking determined.  The doctors looked relieved and glad the decision had been made.  Not everyone was on board immediately -- it took my mother some time to convince everyone that she was ready to stop the treatments.  But she was sure and I felt good that I had broached the subject.

She came home and grew stronger without the poisoning of the treatments.  Hospice came by regularly and provided counseling and medical advice and treatments designed to make her feel better day to day. Not treatments that would cure her but make it so she could live her life until her death.

She lived for three months after that decision and was able to attend her grandchildren's soccer games and birthday parties and go out to dinner with her family.  She had streams of visitors and she was able to enjoy their visits in the comfort of a home environment, rather than ill in a hospital bed.   She sat in the sunshine and enjoyed the warmth of upcoming Spring.

She is my hero.  My warrior.  And I know no one more courageous.    She confronted the fear of death head on with a smile and embraced the life she had left.

I wish the same for you and your loved ones.   Stopping treatments and embracing the time you have left makes you no less a hero.   You are a warrior of life and the courage it takes to take that step back from treatments to live that life needs to be celebrated.   Bravo for you!

What Do You Say to Someone Who is Grieving?

This is one of the most frequent questions I get.   Whether someone has lost a parent, a child, or a friend, we want to console and bring comfort but its hard to know what to say.  I think every situation is different and what works for one person may not work for another but here are my suggestions:

1) Just be there.   Its not necessarily what you say (or don't say).   A person grieving just wants to know that people care.  Its one of the main reasons we have funerals.   Besides letting family and friends say goodbye and come to terms that the person is in fact dead, its also a time to come together and console one another.  Don't worry too much about what you are going to say.  Just show up and be there.  The simple phrase, "I care and I am here" is good enough.  Too often people distance themselves from grieving people because they are afraid they will say the wrong thing.   Don't be afraid of saying the wrong thing - not being there is much worse.

2) Listen.   Being nervous about saying the wrong thing means that sometimes people start running their mouth and don't let the grieving person get a word in edgewise.    Let us talk about whatever we want.  It might be about how sad we are or the funeral arrangements or even something unrelated like the weather.  We may laugh or we may cry or just sit there quietly but whatever we do, its okay.

3) You don't need to fix the situation.  In fact you can't. We have to walk through the fire of grief to get to the other side and if we don't deal with it today, we will deal with it later.   Don't try to defuse the grief by changing the subject away from the person who died.  If we start talking about the person who died, that's okay.  Its also okay if we are crying.  Its not your job nor can you stop us from crying or feeling sad.   Just be there and listen.

4) Don't pretend it didn't happen or the person who died never existed.  Because people are afraid of making us cry, they stop talking about the person who died.   We WANT to talk about our loved one and hear how they made a difference in your life.  We want to hear your memories and we want to talk about our memories.  Yes.. we might cry... but that is okay.

5) Its all normal.   Each person is different and whatever works for them is what is normal.    Some people want to sit at home and cry.  Some people may want to actually go out to a party and try to forget for a bit about their grief.   Whatever the response it is normal and fine.

6) Offer specific help.   Grieving people frequently hear, "Let me know what we can do to help."   It is good intentioned and I'm sure the person offering really means it.  The problem is that the grieving person doesn't know what they need or if they do, they don't want to ask for it.   Instead offer something specific -- "My family would like to come clean your house before the funeral.  Is Monday good?"  Or "I make a great manicotti.  Can I bring some tonight for your family?"  With that said, the word OFFER specific help is important.  Give us the option of saying no as well.  We may be sick of eating our fourth pan of manicotti in as many days or the fear of someone seeing my bathroom that has been sorely neglected while caring for my dying loved one is not worth having it cleaned.

6) There is no timeline.   For me, the first few months weren't too bad.  I was busy planning a funeral and cleaning up a life that had been neglected in the month's leading up to my mother's death.  Plus it just didn't seem real.  There was no possible way she was REALLY dead.  It felt like she was just at her house waiting for me to show up.  It wasn't until three months or so after her death that it suddenly felt real and crushing grief set in.  By then, I'm sure my friends thought I was handling it well and had moved on to my new reality.  So don't be surprised if three months or even three years later something sets us off and the grief suddenly become fresh again.

And truly.... just the fact that you are reading this post wondering what you can do to help your friend means that you will do just fine.   You care.  And that is enough.