If you believe that terminally ill residents in Minnesota should not have to suffer like Angie's Grandma, add your name here.
Angie shared her story in June of 2023.
Dying is not what it’s like on TV or in the movies. Dying is an active process. It is ugly, it is painful, and it takes a long time. My grandma died May 17, 2021, at the age of 94. She was actively dying for five days. I was with her for all of it. It was an incredible honor, and it was absolute torture. And it shouldn’t have had to be that way.
My grandma was one of my favorite people. She had a great sense of humor, and she loved fiercely. As a child, during every family gathering, including Christmas, I would be either in her arms or by her side. Instead of ripping into gifts or playing with toys, I was always with her.
When I tried out for the cheerleading squad in high school and didn’t make it, I left school and went to her house. I started sobbing as soon as I saw her and she gave me a hug. I told her what happened and lay on the couch, and she sat next to me, and we watched The Golden Girls together. A similar thing happened when I broke up with a boyfriend. I could just show up at her house, she would give me a hug, and if I wanted to talk we could, and if I didn’t, we’d just sit together watching TV.
We had a special relationship that lasted into adulthood with our weekly phone dates. I could talk to her about anything, and she would listen, and usually her response would be, “Angie, you’ll do the right thing,” or “You'll get through this.” She never told me what to do, and she was also never patronizing or dismissive.
She kept an active lifestyle and enjoyed her social life, often playing cards and drinking wine with “the girls.” But in early 2021, her health significantly impacted her quality of life. She was very weak and often couldn’t eat.
Her providers thought it was her anxiety, but I knew it wasn’t normal for her to be so anxious that she didn’t eat for days to the point that she got so weak she ended up in the hospital. My grandmother loved food; it wasn’t in her character to not eat.
I pressed for scans and testing, and on February 14, 2021, her 94th birthday, we found out that she had a severe hiatal hernia, a condition in which part of the stomach pushes up through the diaphragm muscle and into the chest cavity. When she ate, her stomach put pressure on her heart and took up space her lungs needed to take an adequate breath. At 94 years old, it was decided symptom management was the best option. Given her age and heart condition, she wasn’t likely to wake up from surgery, which would have been the typical course of action.
Between mid-February and mid-May I regularly commuted the nearly five hours from my home in Minnesota to North Dakota, where my grandmother and the rest of my family lives. For my own therapeutic process, I wrote about every visit: “We know that we don’t have much time left with you. The countdown begins, but we won’t know until later what day we’re on.” I numbered the entries later.
I struggled with the care my grandma was getting those last couple of months. Every visit I saw how different she was from how I had known her my whole life and how quickly that change happened. I felt like her medical team wasn't taking it seriously enough. It felt obvious that she wasn’t going to make it that long, but her medical team’s response was: “Well, she could.”
In the Midwest, there’s more of a mentality that you don’t go on hospice until the very, very end. My grandmother’s doctor didn’t even broach the subject. Toward the end of April, my sister-in-law, who is a nurse practitioner, shared that she thought it was really time for hospice. As soon as we talked to my grandmother about it, she immediately agreed. She was enrolled in hospice that same day. But she was only on hospice for three weeks; I wish her doctor would have provided the option from the get-go in February.
The hospice staff were wonderful and provided comfort in their visits. Being on hospice also meant my grandmother received stronger pain management and benzodiazepines, which helped with the anxiety she was experiencing. But even when she was on hospice and had all the medications that in theory should have made her comfortable, she still really struggled physically and emotionally.
During that time, she asked me questions about options for managing symptoms and her quality of life. I asked her, “Are you worried about the end?” She said, “Oh no, I’m not worried about the end. I’m worried about being able to handle those last days leading up to the end. That’s what I'm scared of.” I told her, “Whatever you want to do, Grandma, I’ll make it happen. Just tell me, and I’ll do it.” “What I really want, Angie, is for you to go buy pills, help me take them and then leave the room.” I responded, “Grandma, I can’t do that. But when the time comes, I will be with you, and nothing will make me leave.”
My grandma was a huge part of my life. She never placed undue burden on me and rarely asked anything of me. When she asked for the most important thing, I didn’t do it. Not because I didn’t want to help her, but because I couldn’t. No one could.
On May 12, 2021, my dad called and said something had changed and my grandma didn’t have much time. It took every ounce of self-restraint to not drive 100mph. When I got there, I immediately took my grandma’s hand. She gripped my hand tightly and said, “Stay. I need you to stay.”
The next day her active dying process started. It lasted for five days. She had to hold someone’s hand at all times. If one of us let go for even a moment, she startled awake and called out for us. She was scared. The memory of her calling out, “Angie? Angie? Angie, come here,” and her reaching out for me will stay with me for the rest of my life. She would call out “Lord” and for her own grandmother and her father.
All the while, she continued to beg for help to die. She would lock eyes with me and my dad — the two people that knew of her earlier wish — and squeeze our hands tight and plead, “Please, please, please.” I would bury my face in her shoulder, wetting her hospital gown with my tears and whisper, “I’m so sorry, Grandma. I want to help you more than anything, but I can’t. No one will help me. No one will listen to me. But I’ll keep trying.” I was referencing my not-so-subtle asking of the medical staff to give her more and more morphine to help her die more quickly. None of them would. None of them could. She begged for help to die until her last two days, when she could no longer speak and then became completely unresponsive.
My grandma died on May 17, 2021, after five days of pleading and begging for relief that couldn’t be given. My whole family was there with her when her heart beat for the last time, which felt like a gift for her and us — but a gift we could have had at a time of her choosing.
I wish instead that she could have received an aid-in-dying prescription. Her death could have just been the feeling of going to sleep and not a struggle, and it wouldn’t have had to be five excruciating days.
My grandma should have been able to choose how much she was willing to endure. What should a person have to endure, and shouldn’t they get to decide? Any time a person feels like they don’t have agency over themselves, it creates trauma and unnecessary distress. Why should a person be forced to have that be their last experience on this earth?
My grandmother did not want to endure those last three weeks, and she shouldn’t have been forced to. And just because she was still those last two days didn’t mean she was at peace. We don’t know if she continued to feel pain and fear. We as a society like to think because someone is unresponsive that they are at peace, but that may be more for our comfort than what is reality.
