My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

A MUST, MUST, MUST read that appeared in New York Magazine by Michael Wolff

On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.

I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.

It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.

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?

“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws.

In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it’s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.

This is not anomalous; this is the norm.

The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.

Sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats—a gallows but helpful humor: Contrary to the comedian’s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life—and possibly much more.

Mike Wallace, that indefatigable network newsman, died last month in a burst of stories about his accomplishments and character. I focused, though, on a lesser element in the Times’ obituary, that traditional wave-away line: “He had been ill for several years.”

“What does that mean?” I tweeted the young reporter whose byline was on the obit. Someone else responded that it meant Wallace was old. Duh! But then I was pointed to a Washington Post story mentioning dementia. The Times shortly provided an update: Wallace had had bypass surgery four years ago and had been at a facility in Connecticut ever since.

This is not just a drawn-out, stoic, and heroic long good-bye. This is human carnage. Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.

From a young and healthy perspective, we tend to look at dementia as merely ­Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ­ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.

There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.

Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.

Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.

I hesitate to give my mother a personality here. It is the argument I have with myself everyday—she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet … that’s the bind: She remains my mother.

Keep reading. Click here.

14 thoughts on “New York Magazine… Mom, I Love You. I Also Wish You Were Dead. And I Expect You Do, Too

  1. Jean Lee says:

    Beautifully written and so true. My parents were simultaneously diagnosed and dwindled for a decade before they were released and at peace.

  2. Maureen Cronin says:

    This story really struck a cord with me! My husband, now 72, has been struggling with early onset dementia for more than 15 years. Two years ago I had to place him in an Atria facility in NJ after he became violent and actually hurt me. That was hard, but not impossible. Impossible began last August when Atria sent him to the ER with upset stomach, and the surgeons told me he needed emergency surgery. I did float the question of whether this was a good idea, to give a dementia patient a colostomy, but got only stony looks and judgmentalfrowns. Post surgery, he became agitated, angry, can barely speak and has NO quality of life. We need to address how to end the suffering of people with these illnesses! Our living wills do not cover these situations, and they are becoming so common. Thank you for your courage in highlighting this nightmare. I call his life a half life, and I am unfortunately trapped in it with him. NJ will happily force me to spend down to about $100K and only then help cover his costs, forcing me to become a future taxpayer burden in MY old age.(who can get by with $100K in NJ?!)

  3. My Mom died last July 6…after years of dementia/Alzheimer’s…You’ve said it all…you – have -said – it – all

  4. I am so sorry for your loss. Please stay strong!

  5. Roxanne Harrington says:

    in response to the comment about the nightmare of taking a person with dementia to a hospital…WHAT A NIGHTMARE…IT IS NOTHING BUT A TORTURE CHAMBER TO THE PATIENT…and the staff maybe good doctors and nurses, but they do NOT all properly respond to dementia patients. We decided to NEVER take Mom back to the hospital… there is no reason for that panic…Palliative Care and Hospice caregivers work wonders where hospitals faile

  6. Mary R. Sive says:

    Thank you for your courage in writing this, and that includes the ending sentence, with which I am totally in agreement. More people need to be aware that a person or his/her health-care proxy, can sign a DO NOT HOSPITALIZE (DNH) order in addition to DNR.

  7. john kane says:

    My mother is 97 years old and has good health – nothing like what this is about – but she is suffering some dementia and paranoia. That makes her a major pain in the ass and she is a person who never was confused with being a sweet little old lady or even a nice person in her 40s. She has no friends or other relatives except me and she treats me like shit. I agree with one part of the title of this article and I bet there are plenty others who agree. I have every hope that I will be able to do what I call a Hemingway when the time is right because, even with unusually good physical health, I would not want to live like my mother. I will not do well in a warehouse for old people. No one should live beyond 80 or so until we can truly say that 90 is the new 70.

  8. David says:

    My parents gave the four of kids a great gift when they moved/bought into a life time care facility. While they are still healthy and active, they love it. And when they will not be we, will know they are in a wonderful place with excellent care. Mom and Dad are now 83 and 79. They recommended this article.

  9. I can’t say that I blame you. I’ve thought about the same thing. This disease is brutal.

  10. yes, it is ghastly, and we hoped and prayed to be free of it, and we all justified it by saying she was cured the moment she died…but dead is forever…and I miss even her glazed, confused look every now and then

  11. I am afraid I will feel the same way… thank you for your comment.

  12. I attended a baby shower on Saturday last. Sat next to a dear old woman, “sharp as a tack” who nonetheless reached over and held my hand the entire time we talked together. Reminded me of Mom…those last years she always reached for my hand, as though trying to touch reality…

  13. Jill says:

    I am currently in a situation where I just lost my dad (another hospitalization from hell) and am currently full time caregiver to mom. Dad had been her caretaker and I do not know how he did it. I have no friends here, my husband is 10K miles away, I am tired and tired of being the brunt of her anger and frustration — I so “get” this article. Thank you for opening the window here.

    If nothing else, it is nice to know I am not alone.

  14. No, you’re certainly NOT alone. Please take care of yourself.

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