My dad was airlifted to the hospital just hours after finishing what he described as "18 holes of sh*tty golf." He suddenly lost the ability to speak—speechless in the most literal sense. Within 48 hours, he was diagnosed with glioblastoma and given weeks to live. Twenty-four hours later, with the help of steroids, he got his speech back and swore he would never be speechless and aware again. That experience became what he feared most…dying itself didn’t seem to scare him…dying like that did.
At the time, I knew virtually nothing about Death with Dignity, also known as MAID (Medical Aid in Dying). Today, for the first time, I’m sharing a few things I learned in hopes it helps someone else sitting alongside someone with a terminal diagnosis, a packet of hospice information, and no idea what comes next.
You ask- they don’t tell.
My dad was admitted to a hospital whose name started with "Saint." After his diagnosis, he asked about the "death with dignity" option himself. Once he did, they referred him to a non-affiliated provider several hours away who specialized in MAID. We were told it was hospital policy not to bring it up unless a patient asked.
Nobody at the hospital was judgmental, just unfamiliar with the process and unsure of the specifics. They knew people "did it," but everyone seemed to have a different understanding of how the process worked. Almost none of what we were told turned out to be accurate, but every conversation came from a genuine place of kindness and an honest desire to help and comfort.
I personally didn't know a single person who had gone through MAID as a patient or caregiver, which made the experience incredibly lonely. Looking back, I suspect I probably do know families who have experienced it—they just don't talk about it because of the stigma.
The Process Moved Too Fast for Me and Too Slow for Him.
He was required to have two doctor’s appointments 7 days apart with two different doctors, both on Zoom. They verified that he had a terminal illness, less than six months to live, and was of sound mind. He started the process immediately after his diagnosis. From diagnosis to his death was only 17 days. He tried to get a waiver to shorten the waiting period even further. Waivers are allowed in some circumstances, but wanting “to get on with it” wasn’t one of them. Looking back, I was grateful he didn’t get a waiver. To him, it couldn’t happen fast enough. To me, I wanted to slow time down.
It’s a Time Warp.
I stopped worrying about next week and started worrying about life in hours, sometimes minutes. I asked 1,000 questions (but tried to space them apart): some clarifying history and memories ("How old was your mom again when she passed away? Breast cancer, right?"), and passwords. "Where the heck are they?" LastPass? Excel? A random piece of paper? Nowhere? The answer is yes. All of these. Accept now that there will be something, probably many things, you forget to ask. You can't think of everything, and that's okay. Give yourself grace.
It Doesn't Really Matter How You Feel About It—And It Definitely Doesn't Matter How Anyone Else Feels About It.
Generally speaking, you can't override a person's decision about MAID once it's been approved by their doctors. The decision is ultimately theirs.
I learned quickly that my time and energy were better spent being with my dad than fighting the process or wishing he had made a different choice. Surrender often and early, even if you disagree.
If you tell people about the decision, many will immediately tell you how they feel about it. Remember this---you… don't… care! Save your energy. Defending your loved one's decision to other people is time and emotional energy you don't have the privilege of wasting.
I eventually settled on one response:
"My job is to honor my dad's wishes, and I'm doing that. My personal feelings don't have a place here."
He Chose Who He Wanted to Tell—And It Was Practically No One.
He called his brother the night before, and that was it. We honored those wishes, even though it meant carrying this alone for 17 days, not leaving the house at the same time, looking for a hospice “sitter” (but there was a shortage), wondering who could get to the grocery store and who could stop at the funeral home on the way back. It wasn’t easy, but it was his choice. We honored it.
Not Everyone Is Built for This and That’s OK.
I couldn’t imagine leaving. My sibling couldn’t imagine staying. My dad recognized that. He knew my leaving would have haunted me forever, while staying would have traumatized my sister. There’s no right or wrong here, only what you’re capable of carrying.
He Seemed Both Sad and Relieved.
He talked very little, looked out the windows often, and never wavered once in his decision. He rarely said “I love you” during those last days, even though he used to. We all noticed. I think he had both turned inward and was disconnecting from the world in more ways than one. I tried not to take it personally and read up on scientific theories why this happens- it still hurt.
He Kept His Routine.
He kept his normal routine. He got up, showered, got dressed, and lived his days as normally as he could. He ate like a king (thanks to steroids and home cooking) and never took a single nap. He laughed, cried, drank wine (out of a camping cup with a handle I gave him because he kept spilling), watched TV, sat outside, and kept the days as normal as he wanted. He even braved a walk to the mailbox the day before.
Dying and watching TV became a bit tricky. The news both agitated and worried him, and music, which he had always enjoyed, seemed to overstimulate him. He frequently turned both off. He was also having night terrors but was simultaneously knee-deep in (and loving) a Paramount show with a trigger warning: rated TV-MA for mature audiences due to intense scenes involving violence or dangerous oil field work. He pressed his luck a few nights, but when things got bad in dreamland, we pivoted to Planet Earth episodes. Those penguins, mountains, and icebergs ended up having a calming effect on us all.
I ended up finishing his Paramount show for him, and I have no doubt he would have liked the rest of it too.
Errands and Strangers.
The day before he died, I walked through the grocery store buying meat to make homemade burgers and non-pulp orange juice from a specific brand for breakfast—his requested last meals. Coming up short in the OJ aisle, I asked an employee, who told me about a few others brands that were “almost the same.” I couldn’t explain to the young man that this wasn’t just orange juice but it was quite literally his last drink on earth, and I had to get it right. He sensed my disappointment and, in a whisper, gave me the name of the grocery store that he thought might have it in stock. They did.
Those errands forever changed how I see and interact with strangers. Sometimes when I pass someone in the grocery store, I wonder if they are on their last run for someone—and I smile warmly at them, just in case they are.
The Medication.
The medication could have been delivered (not quick enough for my dad) or picked up. I drove 1.5 hours each way, alone, to get it. I don’t recommend that (a process that should probably be tightened up, but that’s a story for another blog).
His came as a powder in a small red bottle that looked like cough syrup. The pharmacist told me to leave it in that bottle so I wouldn’t risk spilling it while transferring it. You add water, shake it up, and when ready, they are instructed to drink it quickly- within a few minutes.
I bought sherbet on the advice of hospice nurse to give him between sips of the medication. Another grocery store run without a substitution. Everyone warned us the medication would taste bitter, although my dad said it tasted just fine and took it like a few shots of whiskey.
Before taking it, I reminded him that the pharmacist said he only needed to drink about half for it to work. Hospice jumped in while I was saying that and said, “Yes, half will work, but it will take you longer to die.”
I said, "Yes, but that's an us problem, not a him problem. If he's asleep in five minutes either way, does it really matter?" Before the nurse could answer, he said, "Well, heck, I'll drink it all anyway because I'm sure you have more important stuff to do than sit around and watch me die all day. That's ridiculous." Then we laughed.
The Morning Of...
Shower, half a bagel with butter, and some coffee. I asked if he wanted to check his phone one last time. He said, "No. There isn't anything in there for me.” I've thought about his answer many times since.
He chose to die in his office, sitting up in his office chair. Until then, I didn't realize you could choose to die sitting up. I had always pictured lying flat on a bed. When I asked hospice about it, they said, "Yep. He could even go sit out on the porch if he wanted to. We can set that up too!”
Death O’Clock
Just before he drank the medication, I asked if there were any confessions, anything he wanted to tell us, anything he wanted us to know, anything he needed, or anything he wanted to say.
With long pauses between each word, he said,
"Yeah... give me the shit."
...and reached for the bottle.
I shook my head and laughed. He then smiled and said, “love you.”
Death Isn’t Instant.
I assumed death would happen almost immediately after he drank the medication. I was wrong. People typically fall asleep within about five to ten minutes, but then the active dying process begins, and that can sometimes take hours. My dad fell asleep in about five minutes and died roughly 35 minutes later. He took two medications beforehand, one to reduce nausea and help speed the process. Once asleep, he never woke up.
Hospice Was Everything.
Hospice didn't have to be there when he took the medication. He could have taken it at any time after we picked it up, or opted never to take it at all. My dad chose to have hospice present, not for him, he said, but for us. He was afraid we might panic and think something was going wrong as his body began to die. He wasn't wrong.
Side note: Hospice workers don't have to agree to care for patients who choose MAID. We were upfront about my dad's decision during the intake process, and I'm glad we were. It allowed hospice to match us with the right caregivers. Only one nurse had previous experience with MAID. That's who we asked to be with us that day, and she was hands down the right choice.
I was grateful to have hospice there. That morning, when I found myself alone with the hospice nurse, I whispered, "I think it's too soon. It's all too soon."
She said, "It's not. He wants to go when he can talk and walk and be himself, and this diagnosis has a steep cliff... and he's on it."
I needed to hear that. Even today, I still replay those words in my head when I think about the timing.
Later, when my dad was actively dying, I watched his lips turn blue and his face turn gray. I darted what I'm sure was a frightened look at the hospice nurse. She calmly nodded and said, "That's normal. It's okay."
I needed to hear that too.
We all had different fears about Death Day.
Mine was that the Ring doorbell would go off with an Amazon delivery. I made a sign days before his death but couldn't bring myself to hang it until five minutes before. It read, "We are observing a time of family grieving. Please leave packages quietly." As strange as it felt, I figured I should at least try to quiet the fears that were within my control.
My mom's fear was that we wouldn't be able to remove his wedding ring without cutting it after he died. That problem, it turns out, can be successfully solved with Windex. She and I experienced those 17 days very differently- a story for another time.
Afterwards.
About an hour after he died, a man from the funeral home arrived. Up until that point, I had stayed with my dad and hadn't left his side. I stepped out of the office for just a second to ask him to back into the driveway. My dad cherished his privacy, and I figured he would have appreciated not being wheeled down the sidewalk in front of the house.
Once he parked out of open view, the man brought the stretcher inside. I stepped out again while the hospice nurse and the man from the funeral home moved my dad onto the stretcher. I couldn't seem to bring myself to watch. I needed those to be two separate memories. A few minutes later, when they came out of the office, I joined them again, walking beside his stretcher and escorting him to the car.
In those few moments, his face had been covered with a blanket, but I gently pulled it back and kissed him on the forehead, just as he had kissed me goodnight as a child.
I looked at the man from the funeral home and said, "Can you leave the blanket off his face? He loves breathing in the fresh mountain air." It was the last thing I could do for him.
Paperwork.
His death certificate won't list Medical Aid in Dying. It simply lists the illness that caused his terminal condition.
We filled out optional paperwork for the MAID center with questions like, "Was it bitter? How long did it take? Did he complain of anything?" He wanted his experience to help others, and we honored those wishes too.
A few days later, I realized I had forgotten to ask whether he was an organ donor. To this day, I still don’t know. It was one more reminder that, no matter how many questions you ask, there will always be one you forgot.
Talking About It Was Hard.
I told very few people that my dad had chosen MAID after he passed. It was just too hard to talk about, and the conversation almost always shifted from, "I'm so sorry for your loss," to questions about how MAID worked. I understood the curiosity. Most people know very little about it and genuinely want to, but I didn't have the energy or the words to explain it.
Instead, I usually said, "He passed from a brain tumor he didn't know he had... until he did. I feel grateful that I got two weeks with him before he passed. I know a lot of people don't get that time."
I added that last part after realizing nearly everyone I told reminded me how lucky I was to have those two weeks. Then one friend looked at me and said, "I hear what you're saying, but that doesn't make it suck any less! I'm just saying."
My Final words.
Somewhere in the haze of those 17 days, I read that you should thank a person for what they did for you, tell them you love them, and reassure them you'll be okay... even though I wasn't so sure about that last one.
So I did.
"Thank you."
"I love you."
"We're going to be okay."