Why We Don’t Want to Live Forever
I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.
And yet, on the verge of writing the check (that is, the first LTC check), I backed up.
We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.
And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?
This 6,000 word longread in New York magazine by Michael Wolff is gut-wrenching, and tackles that hard question of caring for the people we love as they age. Is $17,000 a month worth it to care for a loved one who is unable “to walk, talk, or to address her most minimal needs”? And if you’re not keeping a loved one alive, could you let him or her die? These are tough questions, and we all have our own circumstances, and probably don’t know how we’d react until we’re faced with such a situation in front of us. In my old age, I would make sure to have a “Do Not Resuscitate” order on file, because I wouldn’t want to be confined to a bed for the remaining years of my life. If you’re pro-extending life to go as long as possible, and the health care expenses are your financial responsibility, consider long term care insurance. You’ll be glad you did.
Photo: Kdt/Flickr
If I can’t feed myself or wipe my own ass or write a coherent sentence, blow me up. Seriously, just take me into a field, put me in an easy chair over a pile of explosives, play the entirety of This Binary Universe, then light that sucker and run like hell.
I don’t ever want my family to be stuck paying for a doomed situation I wouldn’t even want to maintain and where I am not in a position to tell them that.
@Leon Tchotchke Having a living will is really important in this sort of situation. I recently became (at 29) the decision maker for my mom. This is largely because I am enough of a clinical decision maker that she knows that I’ll withdraw care if something like the above happens. Hearts and lungs are very efficient pumps, but the mind is what makes us alive.
@Leon Tchotchke My mom has told me and my siblings that if she gets to that point, we should wait for a really big blizzard and then just send her outside. I don’t plan to do that, but she’s adding me to the people who get to make medical decisions and I understand that we’re very clear on when she wants us to withdraw care. She’s also been through a number of horrific medical scares, so she’s pretty damn sure about this.
Blargh. These are difficult if not impossible decisions.
My mom died young after a really rapid cancer tore through her over the course of two years. My parents are/were doctors and had baller insurance, but some of her meds still cost them 20k a month out of pocket. Which, if she’d lived would have been 100% worth it. But instead she died, and now my dad has a really mortgaged house in the worst area of the country to sell a house and is in this very Jane Austen situation where he is indebted to a house he no longer lives in.
I think it’s kind of horrendous that we don’t have better guidelines on this and we don’t have much real talk about when to call it quits on paying and how it isn’t always the right choice and doesn’t reflect on your love for someone or who you are as a person.
Knowing with the 20/20 hindsight that my mom was going to die anyway I ‘d rather my dad not be financially fucked too.
@Genghis I agree 100% about better guidelines, but I think we’re inching closer to it. A lot of baby boomers have had to go through this with their parents in the last 10-15 years and they were essentially blindsided by it – but I think those same people are now considering what to do if they and their own adult children wind up in that same situation. My parents have had conversations with me about it after dealing with this with two of my grandparents, so I think we’re at the very least getting out of the period when people just didn’t consider it at all.
@Genghis Khat Yes — we do need better guidelines on this, and people do not talk about it openly. I have brought it up with my own parents on numerous occasions, and they get real uncomfortable, but I say, “How do you want it? Do you want me and my siblings to guess what you want and guess wrong, or do you want to say exactly how you want to be treated if you can’t make those decisions on your own?” Eventually, they relent, but people are trained to be terrified of their own mortality.
Even if you’re not pro-extending life for as long as possible, I think long term care insurance is a good idea. There are plenty of conditions, like senile dementia, in which you are not being kept alive by a machine but still need nearly constant care. I’d rather there be money to hire a nurse for that than to force one of my hypothetical children to become my caretaker.
Amazing and honest and sad essay, but I think it’s important to note that (at least according to the scenario he lays out in the essay) a DNR wouldn’t have made a difference in his mother’s situation so far. DNR means quite literally “do not resuscitate”- if your heart stops, no attempt will be made to revive you.
It doesn’t mean that you won’t be given other curative treatments or palliative care. I’ve watched many divided families approve feeding tubes and surgeries for patients who had a DNR order in place. The scenario the author is describing is still horrifyingly possible, too- even with a family who is ready to let go, some patients simply linger on, and they still require hourly turning, cleaning, feeding, supervision, administration of medications which control pain and other miserable symptoms, and other basic care, sometimes for years- none of which is cheap. In that way, I think the author is engaged in some magical thinking- “if I don’t arrange for long term care, I’ll never need long term care.”
Simply saying “let me go when the time comes” is easy and comforting because it doesn’t force us to confront the frightening possibility that we will be one of the unlucky ones whose body chooses not to go quickly, even in the absence of heroic measures. A “dwindler”, as one of the doctors in the essay described it. A detailed living will that goes beyond “DNR” to specify things like no feeding tube, no curative operations, etc, can protect us somewhat from the situation he’s describing. But LTC insurance is still a damn good idea- particularly if dementia and longevity run in the family. Dying of neglect is, although it may not seem so, probably even worse of a way to go than the fate his mother is enduring.
Went through this with my grandmother. She had alzheimers, and she had been faking really well until my grandfather died. The first crack was at her house when she thought I was my mom (her daughter). We chalked it up to stress and grief, but it was a 15 year slide downhill after that.
She also had a blood disorder similar to hemophilia, treated when it flared up with obscene amounts of prednisone. (For the uninitiated, prednisone is an incredibly useful steroid, with some really horrible side effects.)
A few years after my grandfather died she was still living in her home, but with a full time, live-in caregiver. We were having a family gathering at my mom’s house and noticed that grandma had an ulcer in her mouth that was slowly bleeding out. Mom called the doctor.
The doctor asked about pain, grandma wasn’t feeling a thing. She was smiling and happy to be around us, even if she didn’t really know who we were. He said “You can bring her to the hospital, or you can keep her at home if she’s comfortable.”
Mom didn’t (couldn’t?) hear the code in that statement.
Grandma lived in hell for another 10 years – assisted living became long term care, which became hospice care eventually. She’s been gone for more than a decade now, but I know my mom still feels guilty and selfish for not hearing what the doc was saying, and for subjecting my grandmother to that kind of life. We were very very lucky that she had a teaching pension and had saved enough that we never had to contribute financially to her care.
My sister and I both have copies of the paperwork giving us power of attorney, the right to work with my parent’s pre-selected (by my parents) panel of doctors to have them declared incompetent without going through the courts the minute it seems reasonable to the panel and to me, and DNRs that specify no heroic measures or feeding tubes, only water by mouth for comfort.
These were hard things to work out, but I’m glad it’s all out there and they’ve specified their choices and their trust in my judgement for when the time comes.