Category Archives: fear of dying

Finding the Hero in the Dying

white flowerWhen 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!

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Facing your Own Mortality as a Caregiver

whiteflowersI’ve heard it over and over again. As an adult child moves past their parent’s age of death, they breathe a sigh of relief and can’t help but be surprised they lived past what they thought would be their last breathe. Whether its 50 or 90, we tend to think that we will follow in our parent’s footsteps and there is some scientific proof to back that theory.

Many genetic diseases have hereditary links. For example, if your mother died of breast cancer, this doubles the chance of developing the disease yourself. In the United States, heart disease is the leading killer…. a somewhat inheritable but most times preventable death. Granted, cancer follows at a close second place but many cancers are not genetically linked.

But we all say it and think it… my parent died early and so will I. Or I have genetics on my side… people live forever in my family so I will too. I am not a scientist or even an expert on the subject but I do know how to Google so I was curious… is there any scientific proof that if your parent dies early you will too?

The first article I brought up was http://ageconsearch.umn.edu/bitstream/7145/2/dp060004.pdf which surprisingly cited a number of studies that showed there is NOT a strong correlation. Dr. Roizen on http://www.sharecare.com/health/longevity/how-parents-lifespan-affect-lifespan states pretty much the same thing. He cites the Framingham Study as the most comprehensive and summarizes that they found, “about a 6 percent correlation between life span of the parents and life span of their offspring, meaning that many other factors affect longevity as well. If both your parents lived past the age of seventy-five, the odds that you will live past seventy-five increase to some extent. …. Some genetic conditions, such as being a carrier of the BRCA-1 breast cancer gene…. is one of the instances where genetics can make a big difference.”

So science says not to worry… just because your parent died at 61 (the age my Mom died) does not mean that you will too.

Phoooey on that. Facts are one thing but emotions don’t always follow facts.

I was okay when my mom was dying because I was so busy caring for her and I didn’t have the time to consider my own mortality. After her death though, every little illness became monumental. Bloating? Probably stomach cancer. Respiratory issues?… couldn’t be a cold or just that I was out of shape and fat… it was probably the start of something serious and life threatening.

I began to look at my kids and wonder if I would see them have their own children. Would I see them married and with gray hair or would I be long gone and just a picture on their end table? Would I have the chance to cuddle my grandchildren? Tell them stories and watch them so their parents could have a night out.

People tell me I am like my mother. I am in many ways… and in other ways I hope not…. despite me loving her fiercely, she still drove me nuts. We both have the same issues with weight and similar health issues too — thyroid and arthritis among them. If we have the same health issues, then won’t pancreatic cancer fall into my bucket as well? She was one of the more health conscious in her sibling group — she ate a nearly organic diet, worked daily on the farm, drank rarely and never smoked. She should have lived the longest but she died the youngest of six siblings. Doctors really don’t know what causes the type of pancreatic cancer she had. They say its not hereditary but since they don’t know what causes it I am not ruling genetics out.

Good things have come from the worrying. I took a good look at my life and priorities and decided I was spending way too much time at work and not enough with my children. My youngest daughter informed me I had never chaperoned one of her elementary school field trips. I couldn’t imagine that to be true but when I objected and tried to come up with an instance, I realized she was right. I had been too busy running my company and volunteering for causes, that while they were important and life changing for someone…. they weren’t life changing for my children. My children wanted their mother to show up and be in their lives. I am typing this now at my son’s track meet. Earlier today I attended my daughter’s volleyball tournament. In the past year I have attended lots more events than I have in the past. Its taken some creative methods – I bring my laptop and between matches or heats I work where I can. I have to get up earlier than I may like to get the horses fed or the laundry done. I also divided my job at work so I was no longer doing three jobs and failing at all three because I wasn’t superhuman like I wanted to be.

But I have enjoyed it and I know its the right move. So there is some good in worrying you are going to die young but I don’t recommend it or think its more good than bad.

People throw around phrases like “seize the day” or “you only live once”. You do need to seize the day and make the most of it but not at the detriment of your future. I know I need to believe that I have a future past the age of 61 but I have to admit that I will breathe a big sigh of relief when I pass it.