An Unsettling Glimpse Of What Long-Term Care Really Means
By Cyril Tuohy
I could hear the sobbing from the guest bedroom. The sobs were soft and muffled, but audible nevertheless.
I don’t know exactly what was going through my mother-in-law’s head, but I knew that it had something to do with her anxiety. On this particular October morning, her anxiety was way out of proportion to her challenges of daily living.
It looked like it was going to be a bad day for her — let’s call her Kate — but you never really knew. By noon, she could have snapped out of her psychiatric prison once the medications kicked in.
For the first time, we caught a glimpse of what long-term-care treatment might entail. Long-term care planning has factored more frequently into family discussions — and will continue to do so until the end of her life.
There are about 8 million people in the U.S. receiving some form of long-term care in 2012, according to the National Center for Health Statistics. We have no doubt that Kate soon will join those ranks in one way or another.
Over the past three years Kate seems to have been especially vulnerable to time’s merciless advance.
Born in 1940, she’ll turn 75 next year. By today’s longevity standards, though, 75 years old isn’t old.
Jeralean Talley of Inkster, Mich., the oldest person living in the U.S., turned 115 last May. She was bowling until 104, according to news reports. In 2012, Tamae Watanabe, 73, became the oldest woman to scale Mount Everest.
No one knows how much time Kate has left. Neither a mega-manager such as the Meg Whitmans of the world, nor supremely fit like Watanabe, Kate resides mentally and physically in the vast middle.
For years, Kate had been very stable despite a history of mental issues in her family. For her entire life, she’s lived within an hour’s drive of where she was born. A few years ago, she and her husband moved 45 minutes west to the next county.
Change isn’t something she is used to.
She was married — very happily — to the same man for 49 years. Then on July 30, 2011, he suffered from a brain hemorrhage after coming back from a business trip in Chicago.
His plane landed on a Saturday night, he started mumbling shortly before midnight and was admitted to the intensive care unit at Morristown (N.J.) Memorial Hospital in the early morning hours of July 31, 2011.
He never regained consciousness and the doctors told her that even the slimmest of recoveries would likely keep him bedridden for the rest of his life. She ordered him to be taken off the ventilator. He died on a Wednesday afternoon. He was only 70.
In four days, 49 years of married life ended in a blink, shut down, stopped cold. Ever since, life has been more fragile for Kate.
We expected it. Mortality tables tell you that husbands die before wives, even if the actuaries can’t pin down the suddenness of death.
Every time August rolls around, we make the extra phone call, ensure that she is surrounded by family. It helps, though life will never be the same. Her life for us seems just a bit more tenuous at that time of the year.
Her family history meant she’d been at risk for depression, and she’d been medicated for her conditions for years.
Her husband, a former financial advisor and producer with a well-respected broker/dealer, was the “big-picture” guy, the strategist, in the household. She was the executor, the tactician. Together they made a good team and had a great run.
Last year, though, Kate was diagnosed with a nonmalignant tumor in one of her big toes. She was admitted to surgery in October in New York. She came to our house, an hour’s drive to the south, to recover.
The recovery was painful.
The doctors prescribed OxyContin and the narcotics that everyone hears so much about.
To dull the pain, she took more of it. Within three weeks, she was starting to get the shakes, scratching at her arms.
My mother-in-law called the surgeon, pleading with him to call her back. He would, but it would often take several days for him to call her. When she finally did get him on the phone, it wasn’t as if her surgeon could do much for her.
The surgery was successful, and he’d prescribed the normal phalanx of post-operative medications.
Still, she was reassured to hear his voice.
When you grew up in the 1950s and 1960s, before the vast changes in health care and the medical-industrial complex, you remember what the doctor-patient relationship was like: more personal and anchored by the family physician. At least, that’s the way she remembers it. When she didn’t hear from her surgeon, she grew frustrated, despondent.
My wife has since taken charge, so my mother-in-law is in good hands. No one is as effective a nurse case manager as an engaged and loving daughter.
Kate remained fairly stable until last June when a change in her medication led to a spike in her mental volatility. Some days, she couldn’t get out of bed. Her daughters tag teamed to help.
By late September, it was difficult for Kate to manage on her own. With every bout of confusion and disorientation, it was more difficult for her to bounce back. Every time an anxiety attack would surface, she would have less of an incentive to get out of bed.
In October, she came to stay with us.
Those first weeks were difficult. Some days she was positively catatonic. Her face was drawn, she seemed confused, she shuffled from one room to the next without much purpose.
And yet, the surgery of a year ago had gone well, and she was physically in a decent shape: she was pain-free.
Dissatisfied with her psychiatrist of many years, we went with her to another doctor and she was admitted to outpatient therapy. She was miserable. The therapy didn’t seem to apply to her, she told us.
Then a stint in electro convulsive therapy (ECG) affected her short-term memory, and the two week stay at the psychiatric hospital didn’t really help — or so she said once more. She swore she couldn’t tell if the treatments had any effect.
We could tell the difference. She’s way better than she was three months ago.
Kate has a picnic basket full of pills. Most of them are vitamins and the prescription lineup includes Seroquel and Latuda, familiar brands to 75-year-olds with a history of anxiety and depression.
Early in the week, she lays out the pills in a dozen small plastic cups to make sure she remembers which ones to take in and in what dosage.
She’s what you call “detail oriented.” She pays attention to little things that matter little. As she gets older, it seems, she pays proportionately more attention to smaller and smaller details.
She’ll interrupt your conversation to tell you she’s putting the dirty glass in the upper tray of the dishwasher, but she won’t think to ask her daughters to meet with her and her financial advisor to discuss matters of wealth transfer.
Like millions of other septuagenarians, Kate’s a legal adult; has been for decades. We can’t force her to follow her medical regimen, so there’s nothing to keep her from making life difficult for those around her, even if she doesn’t mean to.
We tell her what to do, but she’s forgetful.
At opportune moments, I urge her to think about downsizing out of her home she shares with her cat to a rental apartment.
She’s not ready to leave yet, although she’s thought about it. She hangs on to her memories of how it was with her husband, the way it used to be. She measures life by what has been, not what’s to come.
Kate will be going back home sometime in January. Her three months of living out of a suitcase are coming to an end.
She’s in far better shape than she was in September. She gets up, gets dressed and drives to the grocery store.
But is she good enough to prevent herself from tumbling off the mental precipice? I’m not sure.
That another “precipitating event” awaits her, I’ve no doubt. That could tip her stability into the danger zone once more: staying in bed, and making excuses to remain there.
Without one of her daughters next to her to force her to get her day under way, there’s little incentive for Kate to “flick the on switch.”
We’re arranging to have a full-time helper. That will allow Kate to stay in her home, where she wants to be and where we want her to be as long as it’s possible without unduly affecting her two daughters who have their own lives and run their own households.
But just yesterday, already, Kate admitted toying with the idea of passing on a live-in helper. She didn’t think she really needed one. Worse still, the thought of forgoing her outpatient therapy sessions four or five times a week has entered her mind.
Her doctor has warned her: walk away from therapy and you’re back to living out of your suitcase.
She mumbles something about not interfering with her routine at home, about not overloading her day — though we’re at a loss to see how she’s so busy. Bills are deducted automatically, private insurance picks up where Medicare ends, her assets are bounding along with the market.
Still, we count our blessings. We’re among the lucky ones, by far. She has a gold-plated long-term care policy and enough assets to last her the rest of her life. Her daughters live little more than an hour away. In the scheme of things, she really has nothing to complain about and nor do we.
But we know the day is coming when she’ll have to downsize, move to independent living or come live with us in an in-law suite.
When it does we’ll be ready, although I’m not sure she will.
Cyril Tuohy is senior writer for InsuranceNewsNet. He has covered the financial services industry for more than 15 years. Cyril may be reached at [email protected].
© Entire contents copyright 2014 by InsuranceNewsNet.com Inc. All rights reserved. No part of this article may be reprinted without the expressed written consent from InsuranceNewsNet.com.
Cyril Tuohy is a writer based in Pennsylvania. He has covered the financial services industry for more than 15 years. He can be reached at [email protected].
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