Don’t you have the same too once in a while? That there is a movie in your head? On repeat? Over and over again? This I have recently. The day my mother died. I realized that I never put it on paper, this day, this rather special day in a way. Not for me but for her it was. It is a significant moment which, for sure, for quite some people is controversial. But still I want to write it down for myself, not to forget this movie that is playing in my head and also for you to know how dying from euthanasia also can be with dignity including all emotions.
How I remember my mother
She was a torn woman. Torn apart with her fight against her inner demons, her exploding character and her ability never to finish anything. So it seems she was floating around in life without grounding somewhere. The latter also seems to be in me, but, that’s a whole different story.
My mother had PTSD (post traumatic stress disorder) which never was treated. She got that as a present from her abusive father who, thank God, is dead already for a while. Her divorce from my father also made an impact on her so she needed help against depression of which she recovered.
Later she met a wonderful man who she remarried to – my stepfather.
In my mother’s early years she was adventurous. Not because she wanted but because of necessity as she felt the urge to run away from her, then, reality – literary. She went to Sri Lanka late 1970ies. In her final years she had, finally, what she always wished for. A home, a husband and me as only child. I wasn’t around much as life chose me going wandering and roaming around the planet having my own adventures.
In her home, her tiny place, with the cat(s), her husband, her only place she could be her ‘messy mind’ without anyone telling her to do or be differently, she felt safe and secure. I am grateful that she got to experience that!
My mother was also a loving mother, a loving woman, a woman who, in her way, sincerely cared and there wasn’t any evil in her. Yes, she could explode from time to time but that was an expression of something else and not in her true character.
Beyond all who she wanted to be more or different herself, this part, this loving part is what I remember about her most.
My mother and cancer
In 2011 I was living in Thailand when I got a phone call from mom.
“I have some bad news” she said. “During the holiday we had in Germany I felt something in my breast when I was under the shower, something that didn’t belong there so we went home. I went to the doctor and he sent me to the hospital for a mammography.
Daniel, I have to tell you, it was positive and I have breast cancer and I don’t know how bad it is yet…”
I’m not really sure how she brought it. Was she hiding her emotions? Was she waiting for my reaction to know what emotions she should have? Or maybe it was overwhelming for her little mind and therefore she didn’t know how to react in the first place? It is a big thing to comprehend.
I was listening to her words and I knew I couldn’t do much from there.
“Hmmm…” I replied, being in thoughts how to reply on such news. It’s not every day that your mother calls you telling she has cancer.
“You know?” I said, “you are in The Netherlands. You are there in one of the richest countries on the planet with one of the best quality of health care the world ever has seen”.
At that moment I remembered the village hospital I was in with pneumonia some months earlier. That was a very different ballgame than the modern hospitals in the Netherlands!
I continued “Don’t be scared… Just go and follow doctor’s advice. Do exactly as he tells you, read and be knowledgeable so you know everything yourself inside out and keep on having trust that all will be good. You will be in good hands, I trust our healthcare and breast cancer is not a cancer anymore where everyone dies from”
“But what if I’m too late? What if it is spread already?”
“Mom! ‘What if’ doesn’t exist.”, I said firmly. “Don’t panic, live now, in this moment and at this moment you have me on the phone and what you know is that you have a tumor in your breast and you just go to each appointment and we take it from each result. Results also can bring good news (relative to the situation that is)”
“Sigh, okay, yes, you are right, thank you, I just needed to hear this. You just stay there in Thailand, I don’t want you to come back as there is nothing to come back for”
“Okay, love you mom”
“Love you too”.
There was good news, after sickbed and medical mishaps she did get better in the end and was cured from cancer.
Fast forward to 2015
I came home again after living for some years in the USA. I didn’t see much of mom’s recovery due to the distance, but, she visited me in the USA. Already then I noticed that her cancer damaged her mental well-being big time. Her emotions weren’t stable, she didn’t like many foods anymore, her arm was nearly exploding from liquid build up (that medical mishap) so it was a big thing for her to have been in the USA and I think she always was proud of that.
She was having a bad cough in March 2015. She couldn’t ‘cough it out’ and it was difficult to breathe as well.
She knew! She knew something was very off.
At some point she needed to go to a physiotherapist because of her fat arm. He didn’t want to touch her anymore because he saw something wasn’t okay and he advised her to have an x-ray.
By accident a part of her lungs came in the image too. Her shoulder was fine, however, her lungs were not!
Her cancer was back again. But this time in her lungs and once cancer is nested there the chance of survival is close to 0.
“I told you I knew it!”….
Somewhere down the line not all cancer has left her body and nested in a nice cozy warm and moist spot – her lungs – where it steadily grew.
Now I was at home, in fact, living at my parents home. It is a small apartment and the room I had was just some half paper walls and each fart you could hear as if it was in my room. It was so frustrating! I was 35, having lived in quite some countries, the world was my home and now I was locked in that room, in that house with nowhere to go! Because I was away from the Netherlands for a near 10 years (!!) of course I am not entitled for any benefit and of course I couldn’t just get a job that would pay the bills to live on my own with all the housing prices soaring. I wanted to go out again! Travel, live abroad, to the tropics! I just had to accept my situation as well.
My own struggle and mom gradually getting sicker and sicker caused many collisions, however, we knew that and we also allowed it to happen because we knew each other through and through with all the love in the world deep in our hearts. That was a good consolidation.
Eventually, mom became resistant to her chemo. There was an intravenous option, but, mom declined. No more needles, no more chemo, she physically and especially mentally couldn’t handle it anymore.
Also from other medication, so she could breath better, made her fat and diabetic.
It was now on the point that doctors couldn’t do anything anymore besides checking her cancer progressing.
We knew the waiting till the last day has started.
Not giving up
No matter how hopeless the situation was, none of us gave up. Relative to the situation, her cancer, my frustrations and my stepfather there in between taking the best care of mom (something I never could have done even close myself), the spirit was actually quite good! We took things day by day and each day was different.
I had some part time jobs, I started driving with Uber, I actually passed exams and I am so glad to this day, that mom saw me at least progressing in the studies I was doing!
I was reading more about food and alternative cancer treatments and came, of course, to weedoil. From all the “alternatives” (of which most of them are crap and do not go into that) weedoil was the most credible. The alternative “treatments” never ever can replace healthcare. It doesn’t have the scientific basis. I knew about experiences that weedoil has some credibility and as nothing else worked anyway we decided to try that.
And I’ll be damned, mom actually improved! I learned to make that oil, she started taking it and:
- she got more relaxed
- Her diabetic was nearly gone
- She lost weight
- and the cancer progressed slower
But we also knew it wouldn’t cure her as she never gave it a real shot by increasing the amount of oil at the same time to make it effective. She was scared of medicine, of the consequences, as chemotherapy kills more than you want to sign up for.
Euthanasia and science
I never really could understand how it feels having the feeling that “life is complete” when you’re still alive. I still cannot imagine myself choosing to willingly ending my life purposely. Yes, I have been depressed and all and I had those idealizations that death is the better alternative. But with a healthy mind I never would ever.
Mom was so courageous to take a stand. She did not want to be taken care of. She did not want to be in a hospice. She did not want to leave the comfort of her own home, her husband and me. She did not want to be washed. She did not want strangers touching her. Of course she respects nurses and doctors but dying is so personal, the process is so personal so she wanted to have it her way. She wanted to keep her own dignity in her own safe space.
The last heroic stand she took was also not to have a funeral. She gave her body away to science, for other people to learn from. So medical students could see with their own eyes how cancer looked like, and its physical consequences. I never asked through what they would be doing with her body. I only know that after examinations and studies it is ‘destroyed’ (…..nice wording… not!).
In the Netherlands euthanasia for terminal patients is possible. There was no chance for her to get well again, all boxes were ticked off, all talks with all doctors and psychologists were done and she got the approval and a doctor who was willing to do the act.
Now she had both a birthday and a dieday.
Seeing her getting worse, seeing the cancer deteriorating her, seeing that every single day is very confrontational. There is no break, there are no visiting hours, there is no other place to go to. We were living with mom who was living towards her own dieday (which still was unknown).
At some point she couldn’t get oxygen anymore so she had a breather. A big machine producing oxygen, lead through tubes into her nose. Ice cold dry pure oxygen. At first 5 min an hour and in the end 24/7, destroying the whole inside of her nose.
More and more liquid built up in her lungs, her cancer spreading its tentacles over the surface. Slowly but surely as an oil spill spreading out and destroying each healthy lung cell one after the other after the other. And with less and less cells, mom could take in less and less oxygen. Eventually she would drown herself.
In the first week of October, with peace in her heart she called and her dieday was arranged, which only would be a couple of days from now.
Her last day – the 11th of Oct 2016
How different was it then, knowing her die day, than a month ago. Then she was in panic!
“What will our last dinner be? Will I see my (abusive) father again? Will I see my stillborn son again who I so terribly miss? I do want to see my grandparents who always were there for me! How, why, what???”
She broke down in tears, crying like a little child, lost in this world, lost in thoughts, lost in emotions, too good to die but too good to feel alive.
“Mom….” I spoke softly to her holding my own tears and emotions to the back ground. It is damn difficult to see a person dying and having all these emotions. There is nothing in the whole world that can ever prepare you for such thing.
“Mom…. Take a deep breath. Please do see this situation. Emotions are, rightfully, overwhelming you. It is not a question for now what your last meal will be. Look how good you still are and you are nowhere ready to go. You are too alive for that and you didn’t feel that click, that peace, that moment you truly feel it is your time to go. That still is in the future.
Your stillborn baby, he’s up there too, on a rightful place and you will see him. Your parents and all the people you don’t want to see, they have their place in whatever is next after this life. You will choose the day you die, you will go where you belong, where you will find your eternal peace, love and care. I am sure there is exactly that place for you and you alone, that place you can rest, where your mind is calm, where you can proudly look down to me, to be proud what I will be doing and I know you will follow me no matter where I go and where you are. That is what you deserve, that little spot of peace and rest in eternity. Only when you are there then you will know, only then, but not before.
My time to go there and letting go of life still is far away, yours is coming soon. Each of us goes in their right time at the right moment and your moment will be decided for you too – you will feel that.”
That moment she indeed felt. That click, that feeling, that sense, that epiphany to let you know it is time. From then on she was at peace. Looking forward, living to the last day, her day to die.
All the other discussions made sense too. All we talked through. Everyone could have their emotions at any time and all was well. We spoke about all the unspoken. There was nothing left in the air to talk about. Mom deleted her social media quietly, she deleted her email, the last people came over to say goodbye to never see her again.
Her chaotic world, her unaccomplished everything, her thoughts, exploding character, mental instability, memories all the way from Sri Lanka to the USA to Germany where she discovered her first cancer her world as a capable loving human being became smaller and smaller.
Darker and darker one person after the other person stepped out of her world and a big empty dark unknown surrounded her. The only people that were there were she, my stepfather and myself. Yet we were in peace, in agreement with love closing her 68 years of being alive.
We agreed I didn’t come with her, I would stay home, which became my place of peace too, just as it was for her. For me it was a bridge too far to see my own mother falling asleep not to wake up again.
Should I go for her? Am I selfish not going? How will I feel when time has passed? Am I making the right choice? What is in mom’s best interest?
“Daniel, my son, you just do what you feel most right to do. I promise forever that I have peace with every decision. My dying is a part in you dying too. At first I wanted you to be there too, but, that would have been selfish of me the same way as you feel selfish to stay home. I am good, I am leaving this world to go to the next. This is what I want. You stay behind and I want you to look back to this moment without regret, so, really, I promise, I promise, anything you choose is okay for me. I have your stepfather with me, I am not alone, you are in my thoughts, in my heart, in my soul, and I love you and I know you love me too. You are the one I am living for, out of everything I didn’t do, I did one thing: I raised a beautiful son and I’m proud of you”.
“I love you too mom” and I walked away, to my room, to my bed, letting all my emotions go still not knowing whether to go or not.
Darkness after the light
I cannot remember how I woke up. It was weird. I must have been emotional. What else? Today was the day that my mom would die. I know that with every loss you will have to build up a new history. A history without that someone. The first time going to the toilet, the first time eating without her being there, the first time drying the walls of the shower because she always commented on it. The first time… everything.
I remember those scenarios running through my head while she and my stepfather came out of that bathroom. He helped her to wash. Her last shower, last shampoo, last toilet, last time dressing up, last time everything.
My stepfather went to another room, so I was alone with mom, having our last moments before the ambulance came taking her away through that front door. I didn’t shower. I wouldn’t join, I couldn’t, I couldn’t…
I sat on the couch, that couch, my safety, my place I could go back to no matter what. Which I did. I sat there, lost, not knowing what to say, what do do, how to behave.
“I’m not coming mom… I’m sorry…” I said….
Mom heard me and for the last time she was a mother, my mother, the woman I am proud of, the woman who raised me, the woman I struggled so much with from time to time, the woman who encouraged me to become who I am now and who I still will be before it is my time to go.
For the last time she could care for me, sitting next to me, so I could have my head on her shoulder and I quietly cried as a little boy.
She was unable to speak anymore. Her oxygen supply totally wrecked her throat so she whispered. She whispered words of love, of pride, of that all is good, that I never would have to worry about her well being anymore. She would soon be in a good place. She told me she’d go to a hospice today anyway if not euthanasia.
She told me it’s difficult to leave me, but, she also told me she is happy. She is happy to go, she is happy to leave her body, she is happy to finally free her mind from this world and this last suffering. She will go to a better place.
She whispered these words, softly and gently in my ear. I believed her, she was sincere, she was going to a better place. Her whispering was soothing, calm, and self assured.
With all her imperfections, she was and forever will be my mom and mine alone.
The doorbell rang. The ambulance is downstairs. The nurses came in with a wheelchair. They helped her in, drove her backwards to the corner. My mom and I were looking at each other, a hand kiss in the air, an ‘I love you’ without voice lipreading each other.
The wheelchair slowly went behind the corner, my stepfather had the door open, my mother, with her last energy bent forward to see me one more last time.
Click. Door closed. She was gone.
I took a candle, lit it, put it in the holder and waited. Hadie took a day off, she was with me at the other side of the planet, ready to chat, to be there for me. I was waiting, restless, knowing she still was alive but that it soon totally was over.
I didn’t feel the urge to go chasing them and see her one more time. This was good, this was enough, this was a blessing as there couldn’t ever have been any better goodbye.
A sudden chance, the restlessness became peace and soon after the news from my stepfather. My mother isn’t alive anymore. She went in peace to a better place.
Symbolically I turned the candle on, representing her being alive, and now, I turned it off and darkness is all that is left.
Fast forward to 2018
I don’t know why I felt the urge to write this down now. Maybe I didn’t fully grief yet. Death is a weird thing for me. I don’t like funerals, I don’t like all the emotions, all the ‘show’ and all the people connected to it. Death and dying is so personal and that, I think, is very individual and how that is lived is also very different. Totally up to the context.
This was perfect. Perfect. I don’t have another word. My mother’s last moments were exactly how she wanted it to be, what more could have been given to her?
Yes, writing this down was confronting, yes, maybe it helps letting her go, or, keeping her with me differently. Yes, this was the movie that was in my mind, the last talk, the last time on the couch together till the door clicked.
Yes, euthanasia is controversial and I don’t know whether I would make the same choice. It is courageous and I respect her for it.
Mom and I did have hard times but in the end the love between a mother and child did survive the sands of time. We have been through rabbit holes. Together but also individually.
There are certainly things I absolutely do not miss at all, but, on the other hand, of course I would have liked her to see all the things I am doing now. That’s how double it can be. At the same time, I do know, and feel, especially because of those last moments together, that it was her time to go and time for me to move on with one parent less.
I am happy and am privileged that we had the opportunity to speak everything out, to clear any sky, no clouds, nothing unsaid. All is good and nothing could have been better at all.
It was a very emotional ride writing all this down, reliving for the first time all the emotions again, but it is good, I feel good and perhaps I can give the whole experience a different place. A place where I can cherish it, from a distance, with peace.
My time is now in Malaysia. I have a new couch, a new forever home, in a new country with my wife. We have our lives together now, facing the joy and the challenges of this current situation. We are determined, we will overcome, we will succeed.
For the very first time I can say I am proud of what I have from my mom. The messy mind, the chaos, the ‘jack of all trades but master of none’. That in essence doesn’t matter. My stand towards life does. My stand towards the living does, how to live together, in harmony, and peace. Whatever I do and will do, short or long, I always will do it with the same kind of passion as mom took on her ‘projects’. I just have to learn to live with it and become able to channel it better.
Mom, wherever you are, thank you! Thank you for letting me becoming me, the person who I am today. I have said this directly to you when you were still alive and the same message still counts till today and all the days still to come.
One day we will meet again, some where at some place. Only after my time has come, but, that might take a very long while, please wait?