Tag Archives: family

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!

Interview with Casey: Guilt, Grief and Caregiving of an Independent Dying Parent

This guide is not just about my journey.  I want to share other peoples stories.  It is remarkable how many commonalities there are in our experiences.  However,  each person has a different perspective and something they can teach the rest of us.  This story is from an interview I did with Casey (I have changed all names for interviews mainly to protect anyone that were involved in their story).

Do you have any tips for working with medical staff?

I found that if you act intelligent you get better care.   What I mean is that if you show them that you have good records and understand their lingo then they treat you differently and you get more direct answers.   I felt better and more prepared too when I had good records with me.    I’d also recommend that you work with the nurses rather than the doctor when you can.    Oh, and don’t be afraid to get a second opinion and go to the best doctor you can.

How about your family? 

I was the rock for my mother but my brother was the rock for me.   Every time I asked for help he stepped up.  We had a constant communication line and talked everyday to compare notes and what needed to be done.

What about your immediate family?

I think I had unreasonable expectations for them.   I got irritated with them at times because the house wasn’t clean or the laundry wasn’t done to my expectations.   But their expectations were different – they didn’t care that the house wasn’t immaculate.  They didn’t expect me to clean it but I felt guilty that it wasn’t done and snapped at them about it.  I appreciate though that they never resented the time I spent with Mom even though it took time away from them.

How did you deal with talking to your Mom about her funeral and plans for burial?

I didn’t really.   I knew it had to be done but my Mom is not a touchy feely kind of person.  But I knew what she would want so I wrote up the will and came to her and told her that I had written it up and that we needed to go have it notarized.   She just said “ok” and we went.

Eventually I asked her about how she wanted to be buried.  I told her, “Mom, you need to tell me what you want done.  I would like to be cremated.  Would you want that?”   In her typical ‘don’t bother me with the details’ fashion, she said just replied, “Whatever you want is fine.”

A couple of days later though she came to me and said, “that seems kind of rough to me… what if I am not totally dead.”  So I knew she had been thinking of our conversation.  We didn’t talk much more about it then but after a few more days she told me that if she was cremated she would want her ashes spread in the river.   So I wasn’t really sure what she wanted when she actually died.  That made it tough.

I remember sitting around with my siblings, husband and kids the day after she died and they were all looking to me to make a decision on how she should be buried.  I wanted to do what SHE wanted but I just wasn’t sure what that was.    Finally I settled on the cremation.   It was what I would want and it was the least expensive option.   But I still wasn’t sure so I said out loud, “Mom, give me a sign that you want the cremation.”  Just then something fell loudly in the kitchen.  I took it as a sign that I had made the right decision.

What triggered the tears after her death?

I was numb for the first three months.  I think I was afraid of feeling the pain and for so long I had been the rock.. not allowing feelings to enter … I had to be strong for my mother.  At the time of her death I didn’t feel as sad as I thought I would because I was happy for her that she was no longer in pain.   It took about three months to believe it was real and then it really hurt.  By then it was too late.  Friends thought I should have been over it by now but I was just starting to really feel the pain.

It started with a phone call.  My cell phone rang one day and I looked down to see my Mom’s face and number on the screen.  Shocked, I didn’t know what to think.  I turns out my brother, who had loaned the phone to my Mom, hadn’t changed the contact numbers after her death.  But that started the tears.

Other things were triggers too.  Buying flowers in the spring was tough.  It was something we had always done together and I wasn’t sure how to do it without her.  I bought all the flowers she would have liked and planted them the way that she wanted.  I’m not sure if that was a tribute to her or just because I could hear her in my head telling me what to do.  Shopping is the same way.  My mother and I always shopped together.  Its been over seven months and I haven’t been shopping for clothes since she died.  I’m saving a lot of money!

If you could go back and change anything about the time when you were caring for her what it would be?

Not much.   I guess the one thing would be to spend more time sitting and talking with my Mom.   Instead of talking to her I spent time cleaning her house and taking care of things.   Part of it was I was afraid of talking about the hard things but also I felt like I was accomplishing something.   If I could give anyone going through this some advice it would be to be tender and caring and loving because you can’t get those moments back.  And forgiving because they can be difficult at the end.

Another would be to “Listen and listen well.”   Listen to the things they really care about and then do them even if it is against what you would want.  When it became difficult for Mom to care for herself, I asked her to come live with me.  She refused and it hurt my feelings.  Why wouldn’t she want to come live with my family?  The people who really cared about her?

Eventually, she wasn’t able to be alone and her neighbor and good friend was coming to check in on her.  Hospice was involved at that point and I called Hospice and told them I was coming to get her.  I was putting my foot down and she was coming to live with me.   I arrived at her house to get her and started to gather the things that she would need.  After a bit, her friend asked to speak to me outside.

I know it was difficult for her but I appreciate what she reminded me of that day.   “Casey, this is not about you.   I know you want her with you but she wants this control and independence.  She wants to be able to change the thermostat to what she wants, walk at night without bothering you, eat what she wants and when she wants.   She loves you dearly and appreciates what you do but she needs this independence.   When she told Hospice that you were coming to get her to take her to your house, she cried.”

It hurt me to do it, but I left her at home that day.  It wasn’t about me.  My Mom may have been ill, but her mind was not and she needed this last bit of control over her life.

I also wish I had asked Mom about her past, her childhood and things I didn’t know.  I assumed I would be able to ask her brother after her death and avoid asking her about her past as she was dying but turns out her brother doesn’t remember.   Now it’s lost heritage that I can’t get back.