So about ten days ago I get The Call. Mom. Paramedics. Ambulance. Hospital.
I was in San Diego waking up for my final day at Cisco Live. Suddenly I’m notifying the team I need to get on the road, check out, find food, find the freeway, and boogie my butt an hour north.
Where things get real.
For the last few months, I’ve expected this. Mom’s health has been waning and in the last year or so the speed of that change has increased. At Christmas it was clear that was continuing and afterward I told Laurie I felt that was likely our last Christmas together. As it turned out, I was right. Understanding that allowed me to mentally plan and prepare for this somewhat, and I quietly adjusted some of my plans and goals for the year so that if or when it happened, I could minimize the chaos and disruptions to those around me.
If you’ve had to deal with elderly family members, you understand the drill. If you haven’t had to, yet, I think all I can say is that even if you think you know what you’re getting yourself into, you really don’t. The challenges — and joys — are astounding. For a few years now, I’ve always known where my suitcase is stored. Waking up every morning wondering in the back of your head “if it happens today, what do I need to do?” affects your thinking and your life, even if you don’t realize it.
Still, Mom was 91-going-on-92, living alone with a part time assistant and independent. As her legal guardian part of my responsibility has been to make sure she’s taking proper care of herself and to make sure what we’re doing aligns with her wishes. This Christmas, we ended up fighting about how much care she needed because she’d just fired her previous helper — to the point I invented an emergency as an excuse to go home early, and she had the lawyer send me a certified letter reminding me she had the right to replace me as guardian — and how was your holiday this year? She did hire in a new — really good — service, though, and they did a good job of helping her the last few months. That streak of independence and pragmatism is what got her this far, to be honest. When she was diagnosed with breast cancer in 2010, she turned to the doctor and said — unironically — “I’m not using them, get rid of them”.
Unfortunately, while she beat the cancer back, she didn’t beat it. In 2012 she was diagnosed with bone cancer which was effectively untreatable, especially at her age and she made a decision to not accept aggressive care.
She also made the decision not to tell any of us, and to swear her doctors to secrecy, which led to this rather strange conversation with the doctor where we were asking about treatment options and the doctor is asking us why we’re bothering to ask, while mom is in the bed telling us to just give her the pill and let her go to sleep. We had to walk the doctor back to the beginning and get him to understand we didn’t know anything about her condition other than the current crisis.
Bone cancer in five ribs, in the spine near the base, and in the pelvis. A lump in one lung that was assumed to be cancer but was never diagnosed because mom wouldn’t bother, and now, a growth in the colon that had finally blocked things up. I had assumed her cancer had returned based on things I’d heard over time and because of what she was carefully not telling me, but the scope of it and the reality of how much she’d lied about her situation to us was a bit stunning. Her view? Nothing to do about it and she didn’t want us to be bothered or fretting (or hovering or trying to convince her to get treatment). Very mom — an absolute pragmatist.
We spent Thursday with her and getting last minute orders on how she wanted things done, and occasionally leaving the room so we could go back in and tell her it’d been taken care of. She denied all treatment but pain medication, and as her legal guardian, I gave the doctors approval of her choice.
Friday we met with the hospice team and put plans together to bring her home, and spent time with her and take care of her there beginning Saturday. By Saturday she’d declined enough that the doctor decided she was too frail to be moved, and so we cancelled the hospice and sat with her in the room. Right around 9PM she passed away.
Then things get fuzzy, because on top of this, I came down with a nasty head cold, and the combination of bad sleep, rhinovirus antics and everything having to do with mom my energy levels fell off a cliff and my brain turned into cottage cheese.
As executor of her estate, I’ve started organizing that process and talking to the people needing to be talked to. Her house is being managed while we make the transition and all of her support team (gardener, pool boy, house cleaners, etc) are going to continue. I’ve talked to the tenants of her properties so they know the situation. We’ve arranged for her placement. I’ve made a first pass through her files and papers to make sure all the bills got paid and to make arrangements that happens when I’m not in town.
Friday, after a week in San Diego and a week as a cold-infected zombie I came home for a few days, and I spent yesterday sitting and staring at nothing. Today is the first day in a week where I actually feel clear-headed and alert enough to put two or three lucid words together, and where I’m not running around dealing with things or on the phone figuring things out.
For me, personally I’m doing okay; I’ve had time knowing this point was coming to be mentally ready for it (a mixed blessing, I think, because you don’t reduce the grief, you spread it out across time) and I must admit I’m happy she’s out of the pain that she was in (and hiding from us). The house is very quiet and empty, and that will take some getting used to, and she was a big and important aspect of my life, and I need to understand how to deal with that empty spot. The one thing I made sure to promise myself was to be careful in making decisions until the implications were understood and planned, rather than just push things forward to fill the empty.
I’ll head back to SoCal Tuesday and we’ll have her ceremony Wednesday, and I’ll spend some time reviewing her papers and figuring out timelines and how much time (and when) I’ll need to be down there to deal with the estate. I’m expecting it’ll take a few months to get everything properly settled. Over the next couple of weeks I should understand that schedule better; I’ve set up the beginnings of a home office there so I can do my job there. I’m hoping to be able to spend some time exploring the area I grew up in and left back in the 1980s that I see so little of these days as well (if you’re in the general area of CSU Fullerton and are interested in grabbing coffee some trip, let me know. I’ll buy)
For me the next few months are going to be about dealing with the estate and understanding how settling that out is going to affect me and my life as well, and what decisions I’ll want to make based on what those changes mean. there are changes, opportunities and responsibilities tied up in that to deal with.
And there’s this big empty spot I need to understand and manage, and I’m not at all sure what that means yet. I can’t say that life is going to return to normal now, but instead, it’s time to start finding the new normal. I have some ideas about that, but the path from here to there is complicated and best taken slowly and with thought.
I’m going to miss her dearly, but I’m happy her suffering is over. That’s a conflict in my thinking that’s not going to be easy to reconcile.
One Final Thought
I typically avoid taking about most Causes or Politics on this blog, but I want to make an exception here. California is currently considering a Death with Dignity bill that would legalize a terminal patient to choose a peaceful death. This is an option that is considered normal and routine for our pets, but not for our family or loved ones.
In my mother’s case, because legally this wasn’t an option, she was forced to go through almost 48 hours of the end of her life in moderate to extreme discomfort because nobody could make a choice to help her die peacefully. At one point she was pleading with us to drive her to Oregon. The doctors and nurses — bless them — were pumping her full of enough morphine to take out an elephant, but even then it often wasn’t enough to keep her from sometimes severe pain. She stopped recognizing us or reacting to our presence Saturday morning and for the last 12 hours or so, the morphine had more or less put her into a coma, but even that was occasionally interrupted by the pain.
This is no rational way to deal with the end of a human’s life, to force suffering for a few extra hours of pained breathing. If we treated a dog this way we’d be put in jail for these actions. It was painful and unfortunate for her, it was stressful for all of us — and for the doctors and nurses and aides who were there with us and doing what they could through the final hours.
I want to encourage all of you to think about why these death with dignity laws are being considered and are needed, and to consider encouraging your lawmakers to take them up and get them passed. They need proper oversight and standards, but all my mom wanted at this point was a pill that would let her sleep and not wake up, and that wish was denied her. Instead, she spent the last couple of days of her life in pain and suffering, avoidably.
I don’t think — and I say this as someone who tried to commit suicide and thankfully failed miserably at the attempts — that we should be callous about the taking of a life, but think we need to think long and hard about how we deal with this on a humane — and human — level. There was a gentleness and dignity that was denied her and that should be allowed as an option.
She had 91, almost 92, great years, but her last couple of days were a horror, and that impacted a dozen or more people who had to stand by unable to help stop the pain. It’s not fair to her or people like her, and it’s not fair to the people we ask to care for them, or their families.
At some point, it should be okay for someone to say enough without driving their scooter in front of a bus. Which is what I hope I have the ability to do if I get to that point and don’t have better options. Think about what it is like to be that person, or in the room with that person, and then let your lawmakers know they should help find a way to treat humans as humanely as we treat dogs and cats.