Quick PSA: It’s been over a month since I’ve posted. Why? Life got in the way.
This post will be very personal. It won’t include any tactical information about startups, venture studios, product management, etc., but I process stuff by writing. Maybe this helps one person dealing with similar issues. You can certainly unsubscribe as a result, but I hope you don’t. And I promise more tactical & practical content soon! 😀
In 25 years I’ll be 75.
The average life expectancy for a man in Canada is 80-81.5 years. But how many of those years will be good and/or productive? What will my quality of life be (from here on out)?
It turns out people my age think about and deal with this a lot, because we’re sandwiched between elderly parents and young (adult or near-adult) children. I have two adult children, both in university and I have two older parents. And this is where the story goes sideways…
A few years ago my mom started showing signs of dementia or Alzheimer’s. Early signs, the type of thing you might chalk up to “getting older”—except for the fact that her mom had Lewy Body dementia at ~75 and it was bad. (Lewy Body often results in very intense and crazy hallucinations.)
Initially, my mom’s condition declined slowly. I only saw her a few times per year, so I didn’t notice much. I suspect that my father and she were “hiding things” (i.e. managing behavior change with “quiet interventions”) to avoid setting off alarm bells. Tackling these types of issues head on is scary. Very few people want to deal with them, which I completely understand.
Historically I’ve had an “it’s better not to really know what the heck is going on” policy for my own health. And parents aren’t always the most forthcoming with their kids. We don’t want to burden them with every issue. It’s true of health and of finances (I know very few families that speak openly about finances with their kids at any age). Culturally this is perhaps changing, but my parents rarely spoke to me about finances or their health.
A couple years ago it became clear something was really wrong. Not only was my mom struggling with memory, abnormal behaviors (like putting things in the wrong place) and more, she was struggling to communicate. If you know my mom, you know that speaking was never an issue. She was an entrepreneur/small business owner and teacher—both jobs that require you to talk, a lot. She had strong opinions, voiced them frequently, and constantly stood up for herself. But “all of a sudden” the words weren’t coming out the same way. Everyone forgets a word or two occasionally. This was different.
Ultimately she was diagnosed with dementia and aphasia. Aphasia impacts your ability to speak, including skipping words, using the wrong words, making up words and having difficulty finding the right words. It’s excruciating to watch someone try and say something but not be able to. They get frustrated (knowing there’s a problem) and you can’t figure out what they’re saying (which makes helping them very difficult). Her decline over the last couple of years has accelerated and it took a serious turn a few months ago when she fell.
On July 23rd, my mom got out of bed, passed out and collapsed. She was rushed to hospital by ambulance and they found blood clots in her lungs. Physical trauma tends to accelerate mental disorders, and that was absolutely the case for my mom. At first we thought she’d go home after recovering physically, but then it became apparent that she’d need more help than my dad could provide.
After 2+ years of caring for her (with increasing effort to do so), my dad couldn’t do it anymore. I don’t think anyone in our family appreciated how much he was doing and how hard it was for him. People will often say, “You have to take care of the caregivers,” or “You have to take care of yourself too, not just the person that needs your help.” These statements are true, but hard to follow. There’s guilt. Stress. Sadness. Along with a heap of second guessing…
We found a private facility for my mom and moved her in once she was physically able to leave the hospital. I’m thankful we can afford it, but not everyone can. The alternative was keeping her at the hospital (I know folks in hospitals work their asses off but the environment is so rough to handle) until a public spot opened in a facility (which can take many months.) If we weren’t able to afford private care, my mom would still be in the hospital, which would have been even worse.
Since then she’s had another emergency hospital trip for a different issue and a lot of medical appointments. One of my mother’s symptoms is constant walking (which is common for dementia patients). Everything she’s ever done has been with a lot of gusto and commitment (to say the least), and the same is true for walking. She was walking for hours every day, non-stop. As a result she damaged her feet, they got infected and she had to go to the hospital. She also “escaped” multiple times from the medium security facility she’s in (which is attached to an old folks’ home that has little to no security). Escape is an exaggeration. She wasn’t trying to leave, but she simply walked out. So she’s walking constantly, unable to communicate clearly (she now almost exclusively babbles nonsense) and hurting herself physically from exhaustion.
There are systems in place to deal with all of this, but they’re confusing and complicated. You have a bunch of people involved, but no one is really in charge. Multiple doctors, care staff, nurses, government officials, etc. all jump in to help, but coordination is a nightmare. And it’s flowing through my dad, who is no spring chicken and completely overwhelmed. I do what I can, but I don’t live close enough to deal with daily things. My mom has sisters, who have also contributed an immeasurable amount, but they have their own lives.
My mom doesn’t recognize me anymore.
When I visit her she knows I’m someone that matters (she’ll smile and hug me), but she doesn’t remember that I’m her son. She doesn’t know my name. She doesn’t remember her grandchildren. The first time I realized she didn’t know who I was, I was heartbroken. To have your mom stare at you and say, “Who are you?” (in a jumbled, but reasonably clear way) is nuts.
You have no choice but to get used to it quickly. Otherwise you’ll fall apart. There’s no time to fall apart, because you have to provide as much care as possible, through an endless coordination of stakeholders. I find myself going into “get shit done mode” (which is a trait my mother definitely passed to me through nature and nurture). Slowing down and dealing with the grief is too shitty (except I’m doing that now by writing this). It’s ironic and sad that as you approach the end with a family member, you spend more time on logistics than simply being with the person.
Occasionally, it’s clear my mom knows what’s going on. She’s not completely out of it, all of the time. Unfortunately, she then asks questions like, “Am I going to die here?” or “What happened to me?” or “Can you take me home?” Absolutely devastating. You find yourself wishing she wouldn’t remember anything, but when she’s delusional and asking nonsensical questions or getting frustrated because you don’t understand her, it’s equally tough. There’s no winning.
My mom is 75.
25 years.
Do I think I’ll end up with dementia and aphasia? I don’t know. I certainly hope not. Losing your mind—in fact, losing your complete identity—is a horrible fate. There are plenty of shitty fates…this one is near the top of the list. But if I have 25 years left, holy fuck, I better make good use of them. As I used to say to my kids, “Maximum effort.”
I want to share a few reflections from this experience (which is ongoing):
People who take care of the elderly, especially in a condition like my mom, are actual saints. I don’t know how they have the patience or strength. They’re not as emotionally attached as family members, but it’s gotta be incredibly draining. My mom now has someone with her 12 hours a day, 7 days a week (because she needs a lot of supervision). That caregiver is a literal life saver (for my mother, my father, me and our entire family). We desperately need more professional caregivers and we need to pay them more money. Whatever they’re making isn’t enough. I don’t care if they don’t have 10 years of formal education. Holy fuck.
Family caregivers never get the credit they deserve or the resources they need to do the best job possible. My dad got caught in the emotional turmoil of watching his wife of 51 years fall apart before his eyes. He couldn’t handle things rationally and decisively. I suspect many family caregivers land in the same place. Eventually they burn out. It’s bad.
The societal burden of the elderly is significant. It’s only going to get worse. I’m not doing formal research here, but they must be consuming a very high percentage of health care resources from doctors’ appointments (including a bunch of specialists), medication, hospitals and other infrastructure. I’m not suggesting we put the elderly on ice floes in the Arctic, but if you don’t see the imminent disaster coming, you’re not paying attention.
The growing longevity trend feels like a VC-fuelled, macho man endeavour of the overly rich. A pipe dream to sell supplements and other nonsense. I think it’s cool to imagine humans living longer, as long as the quality of life is high. But meanwhile kids still die of treatable diseases (and untreatable ones). We can’t even fix the basics, globally, and we’ve got people promising that you don’t have to die. Come on now…
Humans waste a disproportionate amount of time arguing about stuff that doesn’t matter. If we took all the energy we put into stupid shit and focused it on fixing the basics, I believe we’d be much further ahead. Put down the rhetoric, impassioned stupidity, guns and hate, and just fix stuff.
In Canada, medical assistance in dying (MAID) has been legal since 2016. It apparently accounts for 1 in 20 deaths in Canada. That’s a lot. And I’m 100% on board with it. After seeing what my mom is going through, I will explore MAID for myself. I cannot fathom a world where I’m suffering like her. It’s simply not worth it, for the person or their family. I have no interest in being a burden, or living the last years of my life in misery.
Getting organized around your inevitable death means being a lot more transparent and unemotional about things, including finances, relationships, family and health. Get a will. Talk to your family/kids about your wishes. Setup 1Password (or a similar service) in case something happens. Figure out where the money has to come from for care. Just lay it all out there. I haven’t done that completely at this point, but I’m working on it because the shit can hit the fan at any time.
So what about my own health?
I’m taking actions, but I’ll be honest, it scares the hell out of me. My mentality of, “it’s better not to really know,” is still there. I can push myself on the basics—eat better, exercise more frequently—but really digging in still freaks me out. The news won’t be all good (let’s face it, very few people at my age are “perfectly healthy and clear of all issues”), and once you’ve received bad news the interventions may be significant. I don’t necessarily want to change my lifestyle completely, or take 20 medications a day, etc. For what? Another 2-5 years of quality life? I’m not going to eat and drink myself into oblivion, but doing “all the right things, all the time” isn’t a picnic. Even if you do all the right things, there are no guarantees anyway…
All I can say is this: Don’t waste time.
This is a beautiful, heartbreaking piece. And it's exactly what I needed to read. Thank you for this wake up call.
Absolutely gutwrenching piece, had this saved for the time when I was in the right position to read it, and today was finally that day. Thanks for sharing this, I'm sure it was cathartic. Good practical advice as well.