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Updated: Sep 14, 2022

Though I was twice a caregiver, it was only through my volunteer work with Home Hospice Association that I came across the word THANATOLOGY.

THANATOLOGY (noun) is the scientific study of death and the practice associated with it including the study of the needs of the terminally ill and their families,

from the Greek word THANATOS which means death.

I never realized that there was a word or a study to describe the journey of the terminally ill until death. My family and I have lived it. My siblings, cousins and I as grandchildren; my mot

her and uncles as children; we all experienced Ota’s and Oma’s deaths first hand. A counsellor once told me, we as humans only understand another’s life experiences and pains based on what we ourselves have lived. I knew what I was feeling, what my grandfather and my grandmother were feeling were as they came closer to death. I was the primary caregiver, and we had many discussions, but I often wondered if they were reluctant to share their deepest fears and feelings with me to spare me.

But how do you compare experiences of terminal illnesses and the journey towards dying? Yes, both had cancer, but different areas of the body were affected. They had different pains, different conditions and different symptoms unique to them. With both grandparents there were new challenges and things to learn. And both of my grandparents’ symptoms and journeys were unique to them. Everyone’s journey is as unique as they are.

Upon diagnosis, patients along with their family and friends experience a similar range of emotions; denial, disbelief, feelings of injustice, fear, pain, worry of what will happen on the journey to death and what happens with death and beyond. I can only speak of my experiences, my feelings, my pain and my emotions, and what each of my grandparents shared with me. To be totally honest, being the primary person who attended all medical visits, was there for all the tests, scans and waited during the operations, I have to admit I was somewhat isolated in my own experiences and really did not know what each member of my family thought. Sure, there were conversations, but I was wrapped up in my role of a caregiver, I was not emotionally available and able to focus on everyone else. My focus as caregiver was on my grandparents. When my grandfather, Ota, was diagnosed with cancer, I spoke extensively to him and my grandmother, Oma. Later I did the same with my grandmother, Oma when she had Alzheimer’s, diabetes, and then pancreatic cancer.

We learned to “transform suffering and resistance into courage” as Joan Halifax once said. I have to admit the journey of a terminal illness is not a race but a marathon. It’s not just loosing hair from chemotherapy treatments and not looking like yourself, it’s pain. A lot of pain. Physical pain for the patient which includes muscle pains, cramps and spasms, burning sensations, throbbing pains, needle and pin sensations from nerve pains, and sharp shooting pains that don’t always fully go away. There are also side effects; nausea and vomiting, stomach cramps, headaches, all over body soreness and heartburn. Sometimes patients have no appetite but try to eat to lessen the worry of family members or family members asking if feeding tubes will help the patient gain strength. The patient is tired from the pain and the worries of what will happen. Sleep is often affected especially if mobility is limited or a patient is bedridden, and often not able to sleep. The patient worries about their beloved family members and how they are coping and what will happen to everyone. The family also worries how they are expressing their feelings and emotions so not to add stress to the patient and other family members. This vicious cycle causes so much pain and stress for the family and the patient that they experience loss before it even happens.

With terminal illness, there comes a loss of joy. Life changes, and there is less excitement, less positivity and a decrease in excitement for life as there is less to look forward to. There is a loss of hope as there are no goals or plans… in fact the future is a less tangible concept. With all these losses, it is more challenging to be hopeful.

You have all probably heard the saying, “the only things guaranteed in life are death and taxes”. I had to learn to look for small victories, to see the good in the journey. I now look back and see the strength of my love and bond to my grandparents. I learned a lot. I experienced a lot. I also learned to bare my soul in honest communication. We need to communicate feelings and emotions, especially when discussing fears and loss. Communication can become difficult when we want to be hopeful, but it also needs to be realistic. Denial of the severity of an illness was not something either Ota or Oma allowed, as Ota once said, he knew how he felt, he did not need the doctors to tell him what would happen (meaning he knew what lay ahead).

Fear and wishing to be tactful may stop some people from speaking. Not knowing what to say or what to do to be supportive is difficult for us as humans; we want to find solutions and have all the answers. No matter how educated and experienced the doctors, surgeons and specialists are, they can’t always make accurate predictions of what could happen. But my grandparents were practical down to earth people, and would not shy away from the talks with me, even expressing wishes for when they were no longer able to speak up. They insisted on certain things for when they were dead. I could only respect their wishes and honour their wishes.

In facing the end of my grandparents’ lives, I also looked at my life, and gave thought to what I would like to have happen when I am no longer alive. Some people hate having to discuss wills and last testaments because it’s difficult to consider no longer being amongst our family and friends. Death is an unknown, experienced and perceived differently by everyone. Having walked the journey with my grandparents, I can understand why there is thanatology. After all we will all be affected by death at some point in our life, it is my opinion that to be prepared is better than not to be. But this is my opinion. Everyone is a unique individual and needs to do what they feel is best for them.

Image of a person writing in a journal next to the text "From the Pages of a Caregiver's Journal"

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