Nansi Cunningham

By Nansi Cunningham 

When you reach for a self-help book looking for insights into how to cope with death and dying, they often talk about how to live. The words within the covers of these books will remind you that death can come at any time to each one of us, and that knowing this can inspire us to live life to the fullest. The words remind us to tell the people in our lives that we love them and not leave the saying of it until they are gone.

What you don’t get is guidance on what to do when someone you love has decided when to die by setting a date for a medically assisted death (MAID). There are no self-help books for either the person who has made that choice, or for those who surround them. The choice to legally end one’s life through MAID is the road less travelled for the heart and the spirit.

So . . . what is it like to know when you are going to die? What is it like when you know your loved one has chosen to end their human experience on a particular date? Like the grief journey, I am sure that the experience of the knowing is unique for each person. I thought I might share my journey in case it might be helpful to another.

 

October 4, 2018

My mom phoned me today to tell me she has applied for MAID. She had recently returned from a visit with her doctor whom she has built a trusting relationship with over many years. He was there during her mitral valve replacement and supported her to find answers during the slow decline she experienced following the surgery. There were no answers to be found to ease the decline and she suffered for several years with a variety of disabling symptoms. He had indicated that she was now vulnerable to a stroke or heart attack at any time.

And then they spoke about MAID. This gave her great relief, she told me. She did not want to end up having a stroke or a heart attack and be left needing full time care. She did not want to be a burden on her family.

“I know I can talk to you,” she said to me over the phone. “You have always said you would support me in my decision should I want to pursue MAID.”

“I am a coward,” she added quietly over the phone.

I reacted inwardly to this and later sent her a card to express my feelings about her courage. The root of the word courage is “cor”, which means heart in Latin. Speaking openly and honestly about who we are, about what we are feeling and about our experiences both good and bad, is the definition of courage. It is about putting our vulnerability on the line. That is extraordinary. It takes courage to reach out for help and to ask for what we need. And each time we choose courage, we make everyone around us a little better . . . a little braver. “You do that for me,” I told her in the card I sent.

“Can I be with you?” I asked softly through the phone.

“Of course,” she replied immediately. “I want all three of you girls with me.”

When I got off the phone my tattered soul fell apart. I could feel her letting go, distancing herself and going through the motions of daily living. Her body and heart were tired. She will not get better. I know this is what she wants. I respect her choice and will honour her needs, while getting mine out of the way.

 

October 21

Mom has set a date of November 4.

As the days pass by, we sit together in her study listening to opera music and she teaches me how to hear colour in the music. We play scrabble and she is gracious enough not to keep score. We have morning coffee together in the living room, looking out across Granville Island and downtown Vancouver. We share great stretches of silence.  I cherish every moment.

When needed, I go for a walk and let the tears fall. I often feel desperate to hear her voice, to know I will see her again – grasping, not knowing how to let her go forever. A momentary struggle with the unknown. Off on the front edges of this despair, I feel a sense of “looking up”, a hope that this life experience may lighten up.

 

November 1

Mom’s days are focussed on getting through the day, sitting with the nausea, trying to stay present. She told me that she was going to say goodbye to the “kids” (grandchildren) the next day which was her birthday. She was then going to ask them to not come back over the weekend. She wanted them to have their weekend time, not to have to come and see her on their days off. She also told me she would begin to distance herself in preparation.

And so we go through the “daze” together. There is nowhere else I want to be. The rest of the world fades away. I call this the “bubble of focus”.  I am here for her now. I can fall apart later.

 

November 2

This is the day the grandchildren will come to say goodbye to their Grammy. Mom graciously welcomes each grandchild to come and spend time with her. When she is ready, she says her goodbye. Each of them holds back their tears in front of her, but upon turning away the tears fall quietly as they slip out the door. Everyone feels deeply loved and that helps ease the sadness.

“It was harder than I thought it would be,” said Mom after the visits were done. She laid her head back to rest and we shared the deep silence together.

Being with my Mom at this time shows me the preciousness of life, the gift of love, the delight in the moment of hearing her voice and knowing she is doing what she wants.

You know when we say we don’t know anything about what the future will bring, or what will happen in the next moment? Well, my greatest gratitude right now is that Mom KNOWS. She knows what she wants and she know when she wants to make that happen. I want her to be free from suffering. Having her continue on would fill me with despair because I couldn’t “save” her.

 

November 3

Mom is resting in her bed, her eyes closed. I am sitting quietly in the chair in her bedroom, glad to be in her presence. I don’t know how she is preparing for tomorrow – that is her journey to do alone.

While I sit connected to my Mom, I feel her guide me around the edges of the whirlpool of grief that wants to pull me towards its dark centre. She provides me with the strength to pull through and continue down the “river of life”.

 

November 4

The “lasts” began today. It was a despairing jolt to my soul when I recognized them.

. . . the last cup of morning coffee together

. . . the last breakfast smoothie with toast, jam and cheese

. . . the last walk down to Granville Market to pick us up a meal

. . . the last turning to wave up and see her standing in the 8^th floor apartment windows

. . .  the last morning sit together

That last morning sit together involved Mom giving me a lesson on bridge. She spoke with focussed enthusiasm for the card game that gave her so much pleasure and the people she so enjoyed playing with.  She also spoke about how fortunate she was to not be in pain and to be able to stay living in her home, thanks to some extraordinary caregivers who loved her so. Should we all be so blessed.

. . . the last lunch

. . . the last listening to glorious music together

. . . the last supper meal – a pizza at 6:30 pm

 

7:00 pm November 4

The doctor and nurse arrived. Compassionate, gentle women.

Mom said goodbye to all of us and said that she would prefer we didn’t hold her hands, that she wanted to go alone. As the first injection for initiating drowsiness kicked in, she looked a little surprised and raised her arm as if to say goodbye. I felt like she was saying “hello” to something we couldn’t see. When the second injection was given there was a glint of life in her slightly parted eyes . . . and then she was gone.

“You are free now, my dear Mom,” I said while experiencing a sense of relief for her.

I can feel Mom in every cell of my body. Her love holds me up in my sadness. When I ask her to sit with me, she is right there. When I ask her to walk with me, she takes my arm and we walk through the woods. When I ask for guidance, she graciously offers. This will always be so. She will always be with me.

“Mom……I miss your voice. I miss talking to you. I miss us.”