So far, aging has its perks. I’m no stranger to myself and I’ve been in this game long enough that I’m kind of getting the hang of it. I worry less, and benefit from years of cumulative wisdom.
But what happens if there’s a slow leak and all the wisdom dribbles out of the bucket, along with what’s essential that I recognize as me? I’m a nut about clean hair and wash it daily. What if I stop caring about my hair? What if I don’t care about anything?
“Not having agency means the loss of the capacity to decide.”
Am I still me if I look like me, but no longer feel like me, a husk without the kernel? It’s a nightmare to imagine rattling around in my body without myself in there with me. I set goals and do my best to meet them, even if they’re sometimes minimal, like doing the laundry. But what if all my goals fall away, and meaning and purpose fall away with them?
It doesn’t feel like enough to appear content on the outside if I’m hollow on the inside. Just sensual pleasure like chocolate ice cream, a purple streaked sunset, or squishy bits of wet beach sand under my toes doesn’t feel enough. I want to be able to reason, reflect, be expansive and soulful, not just a consumer of primal pleasures. If there’s no longer self-awareness and lucid thinking, the deficit pile starts growing.
I can’t tolerate the idea of needing total care for myself, nor the thought of living without agency. To me, not having agency means the loss of the capacity to decide what I want, even if I need help executing it. Call me finicky, but If I lose my wants and needs, and the ability to fulfill them, or ask for them to be met, I’m heading for the exit.
“50 million Boomers are washing to shore like a silver tsunami.”
I don’t want to live in a facility designed to efficiently manage people who can no longer care for themselves. I don’t want full-on care at all, but most of all, not in an institution. It’s not that this is a bad option, it’s just not for me. I cherish my own bed, my own rules, my own aesthetic, my own stuff. If I’m not me, in my own home, caring for myself with a bit of good-natured aid, then I just don’t want to be.
I don’t want to live away from home, but neither do I want my family providing or organizing all my care, or spending the money required. I can’t abide the human cost of having everything done for me while insuring that I don’t walk out the door into traffic, get lost, overflow the tub, soil myself, the impossibly unpleasant list goes on. No, being at home without any independence won’t work either.
The resources required to have 24/7 care are backbreaking. There are 5.4 million people with dementia, mostly over age 75, and there are three times that many unpaid family caregivers providing 18 billion hours of care 1. The annual cost for this in 2016 is estimated at $236 billion, growing to $1 trillion by 2050. By that time, there will be 88 million people over age 65. Right now we 50 million Boomers are washing to shore like a silver tsunami. Look around at your friends. By age 85, 1 in 3 of us will have dementia, so these dilemmas are affecting an awful lot of us.
Do we suffer if we cannot express it, and appear unaware of it? Pauline, a 91-year-old who has had dementia for the last 10 years, barely speaks and has gangrene creeping up her foot 2. She is likely in pain but cannot tell anyone. Her quality of life only gets worse, never better. High levels of unreported pain are often experienced by those with dementia 3.
“Identifying at what point in the process, if ever, is too much to bear, that’s the hard part.”
Ultimately, this dehumanizing progressive brain disease affects the capacity to move, swallow, cough and breathe. Over time, this increases the likelihood of contracting a fatal pneumonia. Is this a medical problem that should be treated, or an opportunity for a natural death?
Although my antipathies are strong, I’m unsure what to do about them. Even if I knew the what, I’m super wobbly about the when. Unlike the more concrete choice to refuse futile medical interventions in an attempt to ward off an unwanted but imminent and inevitable dying, when our mind is in the midst of collapse, the choices are harder, murkier. This challenge is like scaling Everest in a snowstorm, steep, treacherous, and a slippery slope.
The bad stuff doesn’t happen all at once. That’s what progressive means, the damage worsens over the course of the disease, a period typically of between 6 to 20 years. Identifying at what point in the process, if ever, is too much to bear, that’s the hard part. It’s tough enough to determine this for ourselves, but it’s an impossible burden for our families to figure this out for us.
There are consequential decisions that will help you and your family. If you have severe advanced dementia and contract pneumonia or even a urinary tract infection, do you want to be rescued with antibiotics? If your heart fails, do you want procedures or medicines to save you? If you are not asking for food or drink, do you want someone to offer it anyway? If you can’t breathe, do you want to be intubated and put on a ventilator? If you can’t swallow, do you want food and fluid through a tube?
“They might see things much differently than you do, and that too would be good to know.”
If I’ve reached my still vague tipping point, and my body hasn’t provided the opportunity, it’s reassuring to me that I could finish my life by not eating and drinking for 5 to 21 days. From what I’ve learned, the chemistry of dehydration comes with perks of it’s own. Endorphins kick in that would lead me to a place of painless, peaceful departure. I’d want my family gathered around me. Faced with a life less tolerable than death, I’d be able to fulfill my wish for grace. I’d avoid total care, be at home, not a burden, and not humiliated.
I’m curious about whether any of this resonates with you? Will you dig as deep as you can into your own heart and search the crevices, imagining what you and your life would be like in these circumstances, and then asking yourself what you would want?
It’s good to explore how your wants might affect those you love and who love you. It cuts two ways. They might be militant about your survival no matter what. They might also be pulled down by the weight of you, and although sad, be relieved to let you go. They might see things much differently than you do, and that too would be good to know. It may or may not change how you feel, but having conversations with them is important for everyone.
“Personalizing the problem and bringing it to the forefront of your mind is the first step in solving it.”
When we lived as a tribe, the elder who could not keep up wandered out of the shelter into the forest, across the plain, or onto the ice. It was just what happened, like the change of the seasons. But this isn’t a cultural fit for us. Personalizing the problem and bringing it to the forefront of your mind is the first step in solving it.
I’ve put my cards on the table. What will it take for you to put your cards on the table? I want to hear your thoughts. Take your time, and then let me and your loved ones know. This is some pretty important stuff. Talk to your friends, talk to your family. There’s a Wishlife Medical Choices Worksheet to get you started on this journey. See if you can articulate your thoughts so that you can leave life with loving support, your integrity and dignity intact.
1. http://www.alz.org/facts/overview.asp ↩
2. https://www.washingtonpost.com/national/health-science/how-dementia-makes-it-harder-to-offer-end-of-life-comfort/2016/09/02/4bb34b0c-6ed0-11e6-8365-b19e428a975e_story.html ↩
3. http://aja.sagepub.com/content/31/6/524.abstract ↩