Why is death such a hard thing to talk about?

With the first anniversary of my mother’s death approaching I am publishing a post written several months ago of my experience of this great loss. I will write a happy memoir to follow.
Mom: A life force that lives on within and around me.

Mom: A life force that lives on within and around me.

 

There is something in our society that makes death one of the most difficult topics of conversation. < I recently listened to a radio interview on Q with mortician, Caitlin Doughty about just such topic > We pretend it’s never going to happen and then when it does happen we pretend it away. I have had the unfortunate reality of losing two very special women, too early in life. My grandmother and my mother both died at the age of 59. They both experienced liver-disease symptoms. They both died within eight weeks of becoming ill. It was twenty-five years after her mother’s death that my mom was diagnosed with Stage 4 cancer.

Losing a loved one is never easy. A sudden death gives no one time to take care of unfinished business, no time to say goodbyes… a long term terminal illness can present new opportunities to right wrongs, take care of business, say goodbye… it also often comes with suffering and pain. My mother’s experience was somewhere in the middle. She knew she would die. She thought she had more time than she had. She began the work of settling her affairs. She said goodbye to most of her closest family and friends.

My mother had no regrets. She lived life just as she wished to, taking opportunities as they came. She became sick too rapidly to follow-through with everything she wished to take care of, unable to return many of the calls of those who loved her and had wanted one last talk and laugh with her and her exuberant spirit. Mom suffered. And we were all thankful that the suffering did not last longer. In her final days she was ready for the suffering to end.

I am still unable to talk about the event of her death much. My father was her main caregiver after she became ill. I provided him, and then mom as well in the end, with all of the support that I could. It was difficult seeing the changes that she was experiencing and the independence she had to gradually, but eventually entirely give up.

I have experienced a great deal of pain in my life, both emotional and physical. But you don’t know pain until you watch a loved one suffer. Until they are no longer able to tell you what they need… Until you are absolutely uncertain that she/he aren’t in a terrible pain that you might have the means to alleviate… if only you knew.

I could never have imagined the helpless feeling I had when I no longer knew. Would one more injection of morphine be enough? Or was this even pain? Perhaps she was trying to tell me something? Maybe it was involuntary and not a sign of anything?

The night we lost mom, we’d already discussed amongst us that – after seeing how the night went – we may need to bring mom to the palliative care room at the hospital. We simply couldn’t make her endure our uncertainty if someone else would know what to do and when.

Mom was a very private woman and while she was comfortable with the care my father, my sister and I provided her with, she was also indignant. She was both discouraged and angry that she had to allow us to step inside of her very private personal space. And she was sorry that she needed to put us through it. All I could do was ask mom to allow me to return the gift of care she had always provided me throughout my life.

On my 37th birthday mom was not doing well. She was confused and mixing things up, forgetful and unable to process what we were saying to her. She was also very aware of this. She was frustrated. And she was apologetic for saying and doing things that were unlike her, and for forgetting things she has never once forgotten. Mom forgot my birthday that day. Dad reminded her, and the moment that she saw me and registered who I was she wished me a very heartfelt happy birthday and apology for forgetting. She had no idea what time of day it was or how long she’d gone without wishing her first born a special day.

The rest of the day was very difficult.

The next day became even more so.

She died one year ago on the night after my birthday, before I had headed to bed to leave her in dad’s care. (I had made a practise of giving dad a couple of hours sleep and taking care of mom’s late night needs, as the night was far from restful for either of them.) The memories of mom’s struggles have now faded a little. I know the visions of her suffering will eventually be gone from my mind. However the experience of not being able to decipher mom’s needs in those final hours and minutes is etched in my mind for the rest of my days. I cannot imagine ever forgetting that feeling of despair, just as I cannot imagine ever forgetting the joy or wholeness of holding my children for the first time.

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Leaning into Sharp Points – 50BookPledge – Book 11

Leaning into Sharp Points ~ Dr. Stan Goldberg

practical guidance and nurturing support for caregivers

This is a response that is long overdue. Not because I read the book long ago and didn’t write it, but because I received a complimentary copy from the author to read and review back in March. It’s not a difficult read from the standpoint of its writing, nor is it overly long, I simply had to put it down a couple of times because the topics being covered were more difficult for me to read than I’d anticipated at the time. From a grieving perspective, I simply wasn’t where I thought I was yet as I began reading.

 

I did not have an opportunity to research what it is to be a caregiver before my role as a participant in my mother’s care had come and gone. Her time requiring our care was ultimately short and left no time to consider what it might even mean for those us who cared for her.

 

Dr. Goldberg has a lot of experience in a multitude of ways with the topics of hospice and caregiving. He has written a book for caregivers that addressed the caregiver’s role and what they need to know from a personal perspective. It’s written such that as a caregiver of a loved one I can know what to expect and have some inkling of how I might handle specific situations as they arise. He approaches the topic with care and concern. His sensitivity for the intimacy of this relationship comes through clearly.

 

While I found the book especially relevant for those providing long term care of a terminally or chronically ill loved one, pieces of it were relevant even in the short caregiving relationship I had with my mom. What I found might be especially useful for caregivers is the practical information provided. Such as a short description of what active dieing looks like, or how to approach problems with memory or changes in personality, such that the impact on how we provide care to our loved ones can be as positive as possible.

 

I would happily recommend Leaning Into Sharp Points to anyone faced with the decision to care for their loved one. I hope it can bring the kind of guidance and support that Dr. Goldberg intends by it during one of the most challenging times that may ever be faced.


 

Life is short

Well, my writing keeps getting stalled and then something else comes along to write about. I’m going nowhere fast and the motivation for today’s post is about exactly that. Living life to the fullest – now. Making sure that I take my life where I want it to go.

 

I can’t believe the number of reminders I’ve received in recent months and days of just how short life can be. While still reeling from the loss of my mother six months ago tomorrow. At just 59, after a short illness with cancer, her life was too short. I have been trying to do what I need to to make my life count. To be able to say confidently at any given time that if today is to be the day that the book of my life comes to an End I did all that I could to live the life that I wish to. Will I be happy with what I have done with my life to date?

 

Yesterday, after having the opportunity to give back to an event that has brought me a lot of great memories, I reflected on the new memories made, and the tragic loss of a participant. For the first time in the history of the Cabot Trail Relay, on the final km of the final leg of the 25th anniversary running, we lost a runner. He was an experienced runner who had raced the Cabot Trail almost as many years as it has been running.

 

The crew and organizing committee as well as the running community are all mourning with his family. Remembering that he was a runner, but also a man, husband, father, brother, son, friend…

 

Later today I was delivered more news. This time a life has not been lost, but changed in the blink of an eye, with those oh so dreadful words “you have Cancer”. 27 years old, with cancer that has metastasized to her back, causing a fracture of the sacrum. 27 years old.

 

It’s news like that of my friend’s; like the loss of Steve Dunn, a 58 year old living a healthy active life; like losing my mom far too early that have caused me to pause and really reflect on life, my dreams and aspirations, and the impact I have had.

 

Do you take the time to do this? I don’t do it often enough. Nor have I taken it seriously enough until the last few months. Big changes are ahead, and it’s a stormy, rough sea I’ll be sailing for a while. In the end I will be certain I have pursued the life I truly wish to be living. Ultimately, that is what really matters.