March can still stir up lots of emotions for me. It’s the month my mother died from metastatic breast cancer. I shared about my experience being a caregiver to my mother during her illness and death from metastatic disease in my memoir. I also shared about the fact I was not there during her final moments and how I felt about that. I was, and still am, mostly okay about this. We did not leave things unsaid. I felt, and still feel, at peace about our time spent together at the end of her life and during her whole life for that matter. But still…
I wasn’t there.
You probably already know how I dislike reading and hearing the phrase, so and so lost her/his battle with cancer. Hearing this is like hearing fingernails on a chalkboard to me. I find it downright insulting.
Another phrase that always stings a little is this one, so and so died peacefully while surrounded by her loved ones.
It stings, of course, because…
I wasn’t there.
My mother was surrounded by loved ones when she took her last breath, but I wasn’t one of them.
I wasn’t there.
Even though I was, and still am, “okay” with this, it’s something that still gives me a twinge of not regret necessarily, but more one of envy. I envy the members of my family who were there to witness such moments.
As I shared in my memoir (chapter 28), I felt left out:
My sisters were both there at the end and I was not. Why couldn’t Mother wait for me too? Why did she feel like she could go ahead and die without me?
I was envious of Susan and Kay (my sisters). They were able to watch Dad hold Mother’s hand as she slipped away, and I did not get to share it. My face was not one of the loving faces Mother saw in her last moments. Was she looking for mine? Did she wonder where I was? Did she ask for me? Such thoughts were pointless and selfish, but I couldn’t stop them from entering my mind. I hoped they knew how lucky they were to be there. Mark (my brother) had not been there either, and I wondered how he felt. In a cruel twist of irony, I had gone back to Wisconsin for my annual physical. As my doctor and I sat discussing my next mammogram (and my genetic testing decision), my mother was about to take her last breath. Cancer is fucking cruel.
I am sharing this with you, my dear readers, because it’s important. Sometimes due to a lot of reasons, we cannot be there at the end of a loved one’s life. Sometimes there is tremendous guilt put upon ourselves when this happens.
And guilt is mostly a waste of energy. And very often hurtful.
So if this has ever happened to you, or if it ever does, be gentle with yourself.
Because as is so often true, being there doesn’t just mean being there in the physical sense. You can be with your loved one without being there at all.
I’m pretty sure even though I wasn’t there in the physical sense, my mother still knew I was “there”.
I wasn’t there.
But perhaps in the way that matters most, I was.
Because that’s how love works.
Have you ever been a caregiver for someone at the end of her/his life?
Have you ever been physically present when a loved one died?
Have you ever wanted to be present with a loved one at her/his EOL, but were unable to be for whatever reason?
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Joan
Monday 5th of December 2016
I wasn't there either, when my beloved mum died. I live about 600 miles away but had been going to stay with her regularly over the last 6 years of her life, every couple of weeks. I couldn't take my children out of school or give up my job, as a single parent, but I feel so much guilt that I let her down at the end. We spoke on the phone every day but one Saturday morning her carer rang me to say she was very ill, I spoke to her and she wasn't making any sense, seemed to be speaking in tongues, or in a foreign (unknown) language. Has anyone else ever heard this from a dying loved one? Anyway she was taken to hospital and instead of booking my flight straight away, I booked it for the Monday morning, and spent the weekend with my teenage sons, I took them shopping for their Christmas presents and had my hair done that Saturday (what was I thinking?) and on the Sunday I did things around the house like preparing food to leave them as they still had a week of school and I was leaving them alone. Anyway on the Sunday night, when all was left in order for my sons, my suitcase was packed, and I was sitting alone having a quiet moment before going to bed, I heard my mum say clearly to me 'I can't breathe'. I spoke back to her, saying, 'Yes you can, breathe in, through your nose...out through your mouth...in through your nose....' basically talking her her through a breathing process. Then I felt an incredible peace and closeness to her. A few minutes later the phone rang, and the nurse I had been speaking to several times earlier told me she had just died 'She gave a long breath out and died'.
In a way I was there....but I wasn't there.
One of the last things she said was that she wanted to talk to me. The nurse had told her I was coming in the morning, she replied 'Oh, she doesn't have to do that, she can't leave the boys'
I feel terrible guilt that I didn't just get on a plane that Saturday morning, because in my heart, after hearing her strange speaking, I knew she was about to leave us. Why didn't I go?
A year later, I was there to look after my beloved uncle in the last 8 weeks of his life. I was with him right to the end. It still traumatises me, how difficult his passing was. I nursed him at home, and was alone with him when he died in the middle of the night, The last 40 minutes of his life still haunt me, the violence of the struggle he had before giving up the ghost. He was the best man, so kind and good, and nothing could have prepared me for his final hour. I was unable to help him in any way. But hard as it was, at least I was there, and he knew he wasn't alone, and that he was loved. I saw him out of this world and it was the right place to be. I only wish I could have been there for my mum too. I made the wrong decision and I am so very sorry.
Leslie
Saturday 9th of April 2016
My mom died of metastatic breast cancer in 1990. My grandmother and I spent many hours with her at the hospital but when we went home to get some sleep, she passed away. I was her only child so it was really hard that it happened when she was alone. I don't know if she woke up at all or if she just went peacefully. A kind social worker said sometimes it's easier for someone to die when they're NOT with their family because it's harder on them to leave. So I take comfort in that.
Nancy
Monday 11th of April 2016
Leslie, I am very sorry about your mom. It's hard when we aren't there at the end. The social worker who told you that was very wise and very kind. What a comforting thing for her to say. Thank you for sharing that.
Holli
Saturday 2nd of April 2016
Nancy, for the first time in months, I feel like I have found one person who "gets it".... I am so grateful to have found you and your words. However stating that is to me, I know, means you had navigated these ugly, trying waters and STILL want to share your grief, annoyances, and joy with us- with ME- when I desperately needed to hear authenticity. I am fighting BC, in the middle of chemo, worn to a smooth stone. I have a mother with BC and both parents have very debilitating diseases. I love them so much, but the stress of finding how to care for them really depleted my health. Others- neighbors have stepped in to help, and I am grateful. I will be thinking of you as you miss your mom, but please know how grateful I am that you genuineness and ability to navigate and put a voice to all the craziness has blessed me more than you can know.
Nancy
Saturday 2nd of April 2016
Holli, I am sorry you are dealing with so much. It's horrible to have cancer yourself and top of that, to see your mother dealing with it too. And your dad isn't well either... Again, I'm sorry. I'm humbled by your kind words about my writing. You made my day. Sharing does help; it's why I wrote my memoir too. I go into greater detail there with some topics. Good luck with everything and thank you for reading and commenting.
Kathi
Wednesday 23rd of March 2016
Nancy, this was one of the most heart-rending parts of your memoir for me. I so agree with Beth. It's how we behaved toward our loved ones during their lives that matters, and of course your mother knew how much you loved her. That was never in doubt, because "that's how love works."
I've had similar experiences with people I loved who were dying, that I was there near the end, but not at the end. I've also had the experience of a loved one needing to be alone at the very end and being reassured by that this was okay. For some people, it's easier to let go when they are alone. Still, these memories of not being present just add a sharp edge to our grief, don't they? Love you, dear one. xoxo, Kathi
Nancy
Wednesday 23rd of March 2016
Kathi, Important point you make about some wanting to be alone at the very end. I hadn't really thought about that. I was with my grandma when she died, she's the only one I was with at the very end, so far. It was comforting to me to be there with her, though hard too, of course. I know my mom "knew" I was there at the end in the ways that matter, and I am okay with the fact I wasn't present physically speaking. But still... it's such a life-changing moment and I wasn't there. Thank you for reading and commenting. And thank you again for reading (and reviewing) my memoir. xo
Beth L. Gainer
Saturday 19th of March 2016
Hi Nancy,
This is an excellent post about such an important topic. I have a friend who missed her brother-in-law's death by 10 minutes. He was surrounded by loved ones when he took his last breath, but she wasn't one of them. I think the most important thing is how we treat our parents during their/our lives. Your mother knew how much you loved her. I loved that part in your memoir (I'm not finished reading it yet, but I have been reading it). It is a very poignant part among many poignant parts in the book. xoxo
Nancy
Monday 21st of March 2016
Beth, Thank you for the kind words, Beth.