I’m a long-hauler. That means that I had COVID in January and three months later, I still feel lousy. Malaise overwhelms me. My brain says, “yes you can do it!” A few hours later my body tells me, “You shouldn’t have done that!”
Feeling unwell for a long period of time is something I’ve never experienced. It has given me a glimpse of what old age could be like.
For the past eight years, I have been a companion to elders. Many clients tell me that they want to get up and go but they can’t. It’s a whole new quality of life that, unless you are fortunate, isn’t so great. Now I can sort of relate to that.
These conversations make me reflect on my mortality: what if I was terminally ill or unable to make my own decisions? I’ve observed clients who have made plans for their end-of-life care wishes and those who have not. Many have not discussed their wishes with their adult children. When something happens that threatens their wellbeing, quick action is required. Making a decision during a crisis isn’t good for anyone. An 86-year-old woman falls and breaks a hip. She ends up in a nursing home where there is an available bed. It goes downhill from there.
I’m determined to map out, as best I can, how I want to age as a healthy person and what I want to happen if I’m not well (physically or cognitively). Today I started the process using the Conversation Starter Guide. My husband and I have selected our health care proxies, our will is done and the Durable Powers of Attorney complete our estate plan.
We have not addressed more specific, personal issues. What happens if we are no longer able to live independently? What if one of us is healthy and the other isn’t? Who will care for us or the spouse who outlives the other? What if I can’t enjoy bread and my husband can’t eat a burger? These details are important to discuss. However, having these conversations do not come naturally to me.
Growing up, my parents did not engage in deep conversations. They avoided the word “cancer” as if saying it would mean my mother had a life threatening disease (she fought breast cancer for thirty-five years). Death was another word they avoided, unless it happened to someone else.
Six months after she retired, my fierce mother passed away due to breast cancer. Prior to her death, my sister and I wanted to talk to our parents. We brainstormed: how do we approach the topic of my mother’s dying without using the actual word?
We had no guide, just intuition. We made plans to see our parents on a regular basis. Each time, we would go in with a plan. Eat, gossip and then have the serious talk. “So, just in case, it’s probably a good idea for us to know where important papers are,” my sister and I took turns saying. After each visit, my father promised to prepare the information. We would follow up a few weeks later and he would tell us that he’s working on it. My mother never said a word.
Once we hit the milestone of “knowing where everything is” —we wanted to talk about how they wanted to live and die. My mother wasn’t having any of it.
She refused to say she was dying, even when it was clear that her cancer had significantly progressed. My mother’s advanced planning focused on fighting death — tooth and nail. Even when we were in the emergency room for the umpteenth time and told that nothing more could be done, she had hope.
During her last admission, more tests were done. She even agreed to a surgical procedure. There was no good news. That was it. A hospice social worker came to her room to discuss plans. Did she want to die at home? Did she want to die in a hospice facility?
She barely participated in the conversation. My sister and I jumped in and asked if she could stay at the hospital. Going home seemed insurmountable and we didn’t have a lot of time. My mother quietly agreed.
A few days later, she was talking with visitors, eating and going to the bathroom on her own. She was in pain, but she carried on. As it got more difficult to get out of bed, she refused to use a bedpan — and fought catheterization. When the pain became too much, she refused narcotics.
My mother had a lot of strength in life and she was not giving in. We stood at her bedside as she tried to live. Her death was painful and heartbreaking.
It has been almost six years and I still often think back to that day. If we had the conversation, if she was open to discussing dying, maybe we could have done something to make things easier or, at least, we would have understood why she was so adamantly against a peaceful death.
I continue to see her die. I don’t want my sons to endure more than they have to when I’m old and sick. As hard as it is, I’m ready to have the conversation with them. I’m fifty-nine and hope to live a vibrant life for years to come. But just in case, they will know my wishes.
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I am Carolyn’s sister. She couldn’t have written a more poignant, thoughtful, and heartfelt piece about these very difficult issues. My mother was fierce and fought until the end. But, had she been open to talking about her wishes, she may have had a more peaceful and fulfilled end of life experience.
Thank you, my sister, for writing this. xo
Carolyn, what an insightful and thought-provoking article. As an older person being closer to these possible circumstances, your message really made me think hard about discussing these issues with my husband and children. Thank you for bringing up this uncomfortable but important topic.
Dear Carolyn, such a tender, bittersweet narrative of your precious Mama’s end of life.
Your appeal to every one who fears discussing…the inevitable, and easing the burden of both the Loved One and his or her family, appeals to the commonsense of preparing. So these discussions are not only to plan for assigning financial and personal possessions, which may be the easy part!
Miss you, and sure am hoping your healing accelerates!
Thank you, Carolyn- This is a beautifully written, important piece. How frustrating for you and your sister, who tried to have what should have been a normal (and yes difficult) conversation. I’m sorry you have been plagued by the hard end of your mom’s life…
Having watched both of my parents die of lung cancer, both of them choosing very different end-of-life courses, I’ve learned that all you can do is to support their independent decisions, even if you don’t agree. But like you, we’ve taken the necessary steps and even now, though I’m very healthy, I’m going to take measures that will help my children with decisions when the time is right.
this piece hits home.
my parents were both strong, progressive and positive. the “d” word was never used. when we were faced with their rapid declines and mortality knocking at our doors, we had no vocabulary. as the primary caregiver, i used my intuition and channeled their strength and lifelong independence, and used their very specific end of life documents to guide my stewardship of their last days. ironically, while we never spoke of death and dying, they had buttoned up their estates and living wills with frequent updates. its was a necessary roadmap i used so that i didnt get too tangled up in the emotion of the looming loss. i too think of their last days every single day. i know i did the right thing throughout, on behalf of my 3 brothers and both parents during their last days, but i had no way to ‘talk with them’ about what was happening. they were strong and positive throughout. god bless them.
Thank you for sharing your story, which is so full of heart and wisdom, just like you.
Margie and Carolyn, your story resonates with me. Thank you for sharing it. Those West End women (and men) were tough and stubborn. They kept all inside and they often did not want to deal with unpleasant things, and make difficult decisions. It broke my heart to read your story. No one should die unhappy. You, both were good daughters and did your best. The only thing that we can do is not repeat the mistakes that our parents made and learn from them.