(Auguste Deter 1906. The first person diagnosed with Alzheimer's disease by Dr. Alois Alzheimer)
People ask me why I spend so much time writing. My blog makes no money. It has no prospects of making money. About 50 people read each post, which are mostly my friends and family. It’s basically going nowhere. But that’s ok.
I write not only because it is a creative outlet, but because it is a venue to thoughtfully articulate an idea. To work it out in depth, learn, expose it to the world, and be judged. In this feedback loop I learn more from my readers than I actually learn from studying the original topic. In kind, I hope to provide my readers with a new piece of knowledge, or a new thought, or perspective that they find valuable.
Some of you may be aware that the recent approval of the Biogen drug Aduhelm has me thinking a lot about dementia and treatment of our elderly patient's that have this disease. Is this the best approach?
This post is in the realm of medical theory. Medicine is a powerful force focused on ensuring the existence of the human species by defending it against disease. This is the function of medicine at its core. We identify disease, we innovate, we reduce the impact of the disease on the performance of the species.
The easy part is identifying a problem and coming up with a solution for it. This is what humans have done since the days of fire and caves. Rarely do we sit back and examine our problems to best understand them. On the surface most of what the natural world throws at us appears bad, so we devise a plan to counter it. It’s possible we miss the big picture sometimes and our efforts do not achieve the desired results.
I have no doubt the remainder of this post will be controversial. If enough people read it, I’m sure there will be some blowback. But it is honest. It is from the depths of my understanding of medicine. It comes from the empathy I have for my patient’s. It comes from the observation that it is instinctual to intervene, and it takes a lot of effort to be at peace with doing nothing.
It is not meant to belittle the experience families have with dementia. You feel helpless and burdened when you care for someone you love with this disease. From the outside looking in, its torture. What is the perspective from the inside looking out?
This is best read slow. Maybe taking breaks from time to time to let your imagination run free.
Take yourself to a place far into your future. You’re 84 years old.
Imagine what you think it might be like to be that old.
Now, allow me a few moments to tell you what it is like. You probably imagined a life full of people. Your spouse, children, and grandchildren filling your home week after week. Stopping by to spend time with you. Although it happens for some it does not happen for most.
Most likely you are alone. Your spouse has passed away, likely from some disease several years ago. You have 2.5 children, one likely lives out of state and barely visits, but they call from time to time. If you’ve been fortunate enough to keep a good relationship with the child that lives close by, they help take care of you. It’s humiliating. The person you have spent your life protecting and raising is now bringing you meals, cleaning up your home, and paying your bills. If you have a 0.5 (more than 2 children) there’s a good probability one of them has passed away from some horrific tragedy. You spend most of your days alone in front of a television.
Your hands, hips, knees, and shoulders are arthritic making most tasks very difficult. You have pain reaching up in your cabinet to grab a plate to place some food on. You need support from your walker to stand up off the couch to make it to the bathroom. You often cannot move fast enough to make it to the restroom due to the little warning your bowel and bladder give you when it’s time to evacuate. So, you wear a Depends pad “just in case.” It’s painful to grab a pen to write your granddaughter’s birthday card, but you manage.
Your one child that is around to help think’s you’re lonely and depressed. They recommend getting a dog, but you know you can’t care for an animal. You wouldn’t be able to carry in the food, take it on walks, clean up after it, let alone train it. So, you dismiss this idea and maybe get a fish to look after. They suggest joining a social club, but your hearing is poor, even with your $1200 hearing aids. You can’t engage in conversation with background noise. It’s incredibly frustrating, so you remain isolated. They recommend to start reading a novel, but your vision is poor. Despite a new prescription, and surgical correction of cataracts, your retinas just aren’t what they used to be. Reading requires an intense amount of concentration and effort. You just don’t have it in you. Because of your hearing, vision, and arthritis issues your doctor recommended you no longer drive. Leaving you further isolated.
You are nervous about your finances. You check your bank statements every day. You have no ability to bring in revenue to support yourself. You watch the stock market every morning because your retirement savings is tied to it. Each passing month it dwindles down further and further due to mandatory withdrawals. You worry about getting sick, paying for medical bills, assisted living, a room in a nursing home. You don’t want to be a financial burden on your children, but you know the money is running out.
Nothing tastes or smells like it used to. You used to love food. At one point in your life, you considered yourself a “foodie.” Each new restaurant was a new experience to enjoy. Salt tastes bitter. Spice is completely bland and upsets your stomach terribly. Your sense of smell is impaired, so you don’t even enjoy the aroma from the food you cook. Your appetite is nearly gone. Sugar is about the only thing you can taste. Because of your arthritis and poor vision, you can’t exactly prepare yourself a meal. So, you eat the same thing every day because it’s easy. Cream of wheat in the morning with some blueberries, a sandwich for lunch, and a bowl of ice cream for dinner.
You’re incredibly burdened with the number of pills you have to take each day just to keep you alive. You skip them some days because it’s just exhausting and they make you feel terrible. Your children convinced your doctor to prescribe an anti-depressant for you which you just despise.
You spend most of your nights awake. Your body doesn’t need much sleep. Maybe four hours per night. Each night you’re anxious and scared. You lock your doors, but if someone broke in, you’d have no way to defend yourself. Even if you had a gun there’d be no way you could manage to obtain it, load it, and discharge it before a criminal overtook you.
You are terrified of falling in the middle of the night. Your hallways are lit with nightlights, but it doesn’t help much. If you were to get up to use the restroom you may fall and hurt yourself and no one would find you until the morning, if you’re lucky. You may not be found for several days.
You wake up the next day and it starts all over again.
Overarching all of this is the existential finality of your life. The potential of your life is gone. You aren’t going to write that book you’ve always planned. That trip to Paris is not happening. Your big break isn’t coming. There is only one major event left. You lay awake every night thinking about it. When is it going to happen? How is it going to happen? Will I be in pain? Will I be afraid? What will happen to me? Will God forsake me?
This is not every elderly person. But it is most. This is the average 84-year-old. The average age of someone beginning to suffer from Alzheimer’s.
Life takes a turn.
As the various parts of your body fail eventually so does your mind. You aren’t 100% aware of what’s happening. Its insidious. You may forget to pay some bills. You might get lost going to the grocery store. You forget dates, and times, and holidays. It’s troubling at first, but soon you cross a threshold and are no longer aware of this decline. Suddenly many of your fears begin to fade.
Dementia is not a disease of memory. It’s a disease in time. Not “time” as in the passage of it. The understanding of it. The rule of the totalitarian clock begins to weaken.
Most dementia patients still remember their life. They have memories of their childhood, their parents, their children, and other major events of their life. The “clock” they have been living under simply erodes, until it stands still.
Your mind no longer concerns itself with finances. You begin to care less about your personal safety and the threats around you. Your arthritic joints no longer need so much attention. Your response to pain is slowly numbed. Your desire to eat slowly fades, but that’s ok because you’re not really hungry. You rest a lot. Your thoughts are mainly memories from your past. Your mind doesn’t process new information. It doesn’t worry about the future. It’s in a strange way, calm.
Your mind can no longer tell the difference between your imagination and reality. You may begin having hallucinations. Your spouse that passed away 10 years ago visits you. Your children tell you it’s not real, but it’s real to you. You’ve waited for years to see them again. You have conversations with your parents, whom you haven’t seen in decades, acquaintances from high school. Sometimes your imagination is not pleasant, but for the most part it doesn’t bother you. Your children find the behavior odd, so they bring you to the doctor and you’re given an anti-psychotic, which dampens your thoughts and makes you sleepy.
Eventually your mind slows to a snail’s pace. You sleep 20-22 hours per day. You no longer want to eat. Your speech has all but ceased. Your senses are no longer functional. At this point you are a couple of weeks away from death.
The concept of dying, of time, of regret, any lost potential from your life, is completely gone. There is no existential crisis. There is no anxiety. There is no pain. There is no thought of the final moment. Your last breath. There is no fear of what lies beyond. There is no fear for what may come of your body, or your family.
If you planned it right, your family understood your disease, and your doctors understood your disease. If everyone could see the end game and not be afraid, you have a chance at peace.
This isn’t every person with Alzheimer’s dementia, but it is pretty close to the traditional course of events.
When my father passed away there was one symptom no one could ease. The anxiety of his last breath. In one of our final conversations, he expressed to me that this is what he feared most. He couldn’t bear the thought of that moment. He chose constant physical anguish to stave off the experience as long as possible. There is nothing that exists to relieve this fear.
When I called my 93-year-old grandfather (currently cognitively intact) to tell him that my father (his son) passed away he said, “Oh my God! My whole family is dead.” He began to weep and hung up the phone. He’s lost his wife and both of his sons. He’s alone. Only his thoughts and a broken-down body remain.
Some would say it’s a disease. If you look at it from the inside-out, maybe it’s not. Maybe it’s something else.
Why are we spending billions of dollars in research on infusions and pills to counter this problem, instead of using that money to provide resources for families navigating the final steps in their loved one’s life?