Let’s Talk about Death, Baby….
Well if there is one thing I know for sure, is that when our brother Brian reads the subject line of this blog, he will think, “Oh god, what is she up to now.” hahahaha
Actually, there are two things I know for sure…the second, is that we are all going to die. It is going to happen to each and every one of us. There is no life AND death. Death is a part of life. It is a natural progression of life.
It is so easy to read this statement and feel a bit fucked up from it, right ? Or feel uncomfortable with it. I know most do. Karen, I remember years ago when you were first diagnosed with MSA. We were sitting at your kitchen table and counting dozens of your daily pills. One by one. You looked at me and said, “I still can’t wrap my brain around what this disease is going to do to me. Eventually, I won’t be able to eat, move, talk…how gross and scary…yuck!!!” Those were your words and I too remember feeling scared.
Most don’t think or talk about death. Too much of the unknown, too much fear, therefore avoidance. Well, when death is literally “in your face”, you do start to think about it. But what changes, and I hope for most, is your outlook. Your thoughts shift and you find more comfort in death as opposed to it being “scary and yucky.”
This past week I took a 5 day virtual course via Douglas College called, “End of Life Doula”. As mentioned in my last blog, I have recently gotten involved with learning more about a peaceful end of life. When I first heard the word Doula – only a few months ago – I discovered that it is a Greek word that means Helper.
There were 16 of us in the class. We started off as strangers. Coming together for 5 full days to talk about death. There were nurses, caregivers, a Reiki Master, chakra balancing skills, a Psychiatric nurse, a Hypnoses-therapist, a Music Therapist, guided imagine and visionary skills, were all shared. An eclectic group of individuals who were all so unique in their own way. We were all connected for one reason, “Wanting to improve the quality of life for people as they near the end of their life.” Non medical related.
There were so many stories and so much information that was shared. On day 4 there was a topic related was to Advance Care Planning. This is a process that is in place that gets you thinking, talking and writing down about what kind of health and personal care you would want in your future if you were unable to speak for yourself. It gives your loved ones comfort in knowing that if they need to make decisions for you, they are your wishes. These discussions relating to medical intervention – CPR, a feeding tube, Palliative care, a ventilator – need to be talked about and documented.
A question that if often asked is, “If you had a choice, where do you want to die ? 70% of people say at home (or in nature, a park or near the ocean) but 70% of people die in a hospital. There is a disconnect in our society when it comes to death.
I also learned about MAID – Medical Assistance in Dying. Formally known as Assisted Suicide. I heard about how people left this world – dancing with grandkids, sharing the last days with family in Maui, or specifically on a Tuesday – hearting that last one for a classmate – all choices were so humane.
There were many stories shared, lots of lessons and information was provided and a few games. One game was called,”The Death Game.” We were asked to write down 20 important “things” in our life. All were categorized into groups of 5 by people, items, activities enjoyed, things we loved. The game “story” began when we were informed we had an illness, so you were asked to crumple up, say good-bye to two pieces of paper, relating to “things” in your life. As “life”, the story continued, at your next doctor’s appointment, you were informed that the disease had progressed with now very limited time to live so you had to “let go” of 3 more “things”. And so on. As you got down to those final pieces of paper, you could feel the energy and the sadness – yes even through our virtual call – with every single one of us.
When class started the next day, our instructor Tracy asked us, ” So how did everyone feel last night ?” We all talked about how “heavy” that day was with emotions and then to end with the Death Game. We were all honest with each other about our feelings. The evening post the game, several of us cried and or took very hot long showers. I mentioned how I went on my evening walk to the ocean and suddenly just burst into tears. They weren’t sad tears – not at all – they were tears of feeling so alive and just so very grateful for that exact moment.
On the last day of the course, we were all asked to write down an “elevator pitch” – how would you “sell yourself in 30 seconds” on being a Doula.
Here is what I wrote….
I would be truly honoured to sit with you, your family, your friends and talk about death. To hold the hand of a loved one. To open the curtains so your mother can see the sunshine. To make sure their wishes are being heard.
As a Doula, I can guide and support you and your family through the emotional time. I can provide information on what resources are available to ensure your needs and the needs of your loved ones are met.
Let’s connect on this journey with conversation, empathy, patience, compassion and love.
This past week was a gift that I gave to myself. I had a staycation – something that if not for COVID – I may have never done. Jenna stayed with her dad and he drove her too and from school. Something I have done everyday since COVID. I shut down all social media, each morning I practiced my yoga, went for morning and evening walks – I did ask to “borrow” Lola – so it was the two of us. She was amazing company. I cocooned all week. No driving, no visits, no returning phone calls.
Karen, when I look back at this interest of me wanting to learn more about better quality of life at the end and what options are out there, it all stems from my past experiences. Most recently of course your death.
Throughout the week I spoke of you often. Your legacy. As you know I am so very grateful how we were all with you, in the hospital, holding both your hands. I was able to whisper in your ear as you transitioned out of this world. However, knowing now what I know, if I could do things differently, I would have transported you back to Brian’s living room for the last so many hours. It is legal !!!!! I would have turned on some music, danced around you with ALL the kids, while drinking rum and Diet Coke in your honour. I know for sure that I would have been placing some rum on your lips so you could taste it 🙂
I know I can’t go back and change that day / evening. I am very much at peace with how you left this world. But I just want individuals to know that it is possible. You can and should celebrate a life at the end. And it is ok to dance, sing and play music.
Well, I am officially a Death Doula. I took this course with no expectations or pressure to get a “business” going. I simply wanted to educate myself. I also want to be able to assist loved ones and people with their end of life.
I am a member of the Death Doula Network of BC. My thought is to take the next year or two and volunteer, build a website, join the End of Life Association of Canada as a supporter with a goal of being a member, read books and learn more about Death.
As I said to my class….
“My inspiration for this journey is all related to how I saw my sister’s illness unfold. Especially in the last ten years when she lived in the hospital. I do understand that for many years medical assistance was required. However there may come a time when we need to stop making decisions for others. We need to give people back their own power to end their life on their terms.”
I know that Death is not an easy topic for many, so I am grateful to those who read this blog with an open mind and an open heart.
I love you sis,
PS. I want to let certain individuals in my life know that I am very much holding space for them. There are many people in my life right now, who are battling cancer. There are also individuals I know who are supporting their loved ones with a terminal illness. Decisions are being made relating to MAID. Today, a friend is mourning the loss of a loved one. I hope everyone out there, who is needing some love and comfort feels it in this moment.
PPS. There is no greater intimacy than sitting vigil with an individual in their final hours.
“Vigalling is an opportunity for spiritual practice in real time. Not reading, thinking, or talking about it. Not medication or praying. Actually living a spiritual practice of cultivating my truest presence with another human being for those couple of hours, again, however imperfectly. It is both profound and ordinary at the same time.”
Michael – Brighton Hospice Vigil Volunteer
PPPS. Still so many signs relating to Butterflies xo
The latest one was last weekend. I picked up a large garbage bag with dozens of hangers. I moved them into the garage as I was going to donate / toss, not sure yet. Later that day I walked over the where the bag was and there was one hanger that fell out – it was sitting on the floor. Yes a butterfly hanger. I actually gasped !!! Thank you Karen – I feel you.
Below are a few pics of my morning and evening walks. Every morning I woke up, did my yoga and went for a walk to the ocean with Lola. I would return home and prepare for the morning class.
Class ended Saturday at 3:30pm.
On Thursday, day 3, I made a decision to cancel my plans on Saturday night with a good friend (I was honouring myself and how I felt) I also messaged my boss letting him know that I wanted to add Monday to my “vacation” time. I recognized that I simply needed extra day for just me.
Today I will work in my yard, go for a walk and finally purchase a tree in your honour Karen. A friend from work, sent me a very generous gift card and noted, “I was not too sure what to do for you when you lost your sister, so please take this gift card and buy a tree and plant it in honour of Karen.”
Karen, I will purchase a Lilac tree because of its beauty and I know you love purple xo
10 thoughts on “Let’s Talk about Death, Baby….”
Beautiful Kathy …, I’m so happy you’re here n this journey. You have so much to offer!
Thank you so much Les, you too my friend xo
You are amazing my friend . Thank you for sharing your journey. Sending you lots of love ❤️ and hugs. Hope to see you soon . ♥️Nadia xxoo
Thank you for reading blog and staying connected. Miss you Nad and I hope to see you soon xo
How wonderful that you can put into words that death does not frighten you. I was present at the death of my mother, my brother Barry and my brother Michael. I like to think they are waiting for the rest of us to join them. When I look up at the sky sometimes I wave to them.
Your friend, Lois
Beautiful, thank you Louis. I know that you are also waving to my mother xo
Thank you for your blog I found it very insightful what a wonderful sister . My brother has MSA. he was diagnosed in January 2019, he diagnosed himself as he is a doctor. He was an avid cyclist and was unbelievably active. He lives in the UK and I am in the USA. He had a huge bucket list of places to visit but unfortunately with COVID he has been unable to do any of them. He is now struggling to do many things. I’m desperate to go and see him as I haven’t seen him since October of 2019. I know time is limited for us to be able to communicate.
Hi Gaile, awe, what you wrote brought up so many different feelings and emotions for me. It is a journey. For all of us. Sending a big heartfelt hug to your brother. We don’t know what it feels like until you go through it. But we really feel it because it is closer to so many of us now. Each day truly is a gift. I hope your brother gets to do at least his top 10 on his bucket list !!! You will make it there when you can. We can only do our best. Thank you for sharing the little story about your brother. It humanizes him. He sounds like an amazing guy – hugs to you both xo
Thank you for your blog. Your sister sounds amazing, a wonderful firecracker who loved life and was selfless in not focusing on herself but instead in celebrating whatever she could with family and friends. My heartfelt condolences to you and your brother. I have thought about the death doula work as well. In fact, I am inspired to look up training now. I live in Sydney Australia and I have actually done quite a bit of advocacy in the pregnancy and infant loss area after losing my son at 20 weeks pregnant and several others earlier. Advocacy work became a special part of my journey, healing and feeling my babies still close in my heart. My father has MSA and it is getting harder now, he is fully wheelchair-bound and finding head and hand movement much harder – but he is an amazing and grateful man….he is my hero. We have had full-time live-in care since last October, which is incredibly expensive but we have also had much longer with Dad than any doctors predicted and I know this is due to him remaining at home with dedicated care and having his family all around him – especially as that would not have been possible if he had been in care during covid lockdowns. There are 4 of us daughters, 14 grandkids and 6 great grandkids. My dad is 81, and he got sick at 76, with final diagnosis at 78 (originally they were saying Parkinson’s).
I get torn between feeling like it is cruel for him to have to live like this – needed full care to move or do anything really but then we also have moments of total peace, joy, and lots of cuddles. He can still talk a little bit but it is weak – one of his first symptoms was vocal chord paralysis and so he has a tracheostomy since 2016. My Dad was always so full of life…seeing him like this still seems impossible as it must have been for you with Karen.
Thanks for sharing this blog, I look forward to reading more posts.
Love Pia xx
Pia, thank you so much for sharing this story relating to your father. Yes I completely agree that you have had much longer with him due to the fact that he is at home surrounded by so many of you. 14 grandkids and 6 great grandkids wow what a lucky man !!! Enjoy those moments of peach, joy and cuddles. Those are the moments you will forever cherish. I love that you are feeling inspired to look up training for Death Doula. I always say to people that the course I took was such a beautiful course in so many ways. I am looking forward to getting more involved this year.
Thank you for reading my blog, hugs xo
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