Her husband wasn't ready: Discussions about the end of life

Dr. Jeffrey Schnipper's story:

I see people die in horrible ways. It doesn't need to be that way! In 2011, it takes a lot of work to have a good death. The default is to not have one.

A few years ago, an elderly woman with a bad case of dementia came to our hospital for a cardiac problem. She couldn't verbalize what she wanted regarding her healthcare wishes. Her husband was not ready to let her go. He was her healthcare proxy. He and I met probably for an hour, every day, for a week. We went through the stages of grief together. By the end, he was willing to let her go.

She had a good death.

As a hospitalist, I view these discussions as a really important part of my job; so do other hospitalists. I sometimes get the chance to get the whole family together for long periods of time, which primary care providers can rarely do.

Residents tend to be very concrete about these discussions, asking, "Do you want chest compressions? Pressors? Dialysis?" And so forth. But that's not what the discussions should really be about. It should be more like, "Is your goal to get a cure? To get relief of symptoms? To be as functional as possible? To be kept alive at all costs? Would you like to die at home? What’s important to you? If you were no longer able to do [fill in the blank], would you want to be kept alive?"

Dr. Schnipper's advice: The earlier you can have these discussions, the better, so you'll have a reservoir to draw from. First, talk with your healthcare proxy, after you've chosen one, then with your primary care provider. Then, there are forms to fill out, living wills, healthcare proxies, and so on, as appropriate for the state you live in.

Read my father's end of life story.

Thanks to Dr. Schnipper for our interview of March 16.

Through my dying day, and beyond: Gay Culverhouse Player Outreach Program

Her father was the founder of the Tampa Bay Buccaneers football team, and she herself later served as the company president. Somewhere along the line, Gay Culverhouse took note of the frequent long-term disabilities that NFL players suffer, and she took it to heart.

In October, she testified critically to Congress' Judiciary Committee of the House of Representatives about the NFL’s lax policy toward concussions and overall player safety. She vowed publicly to set up an organization to seek out former players in need, arrange their doctor visits, and help complete their paperwork.

She delivered. The fledgling Gay Culverhouse Player Outreach Program first sent an advocate to help Jerry Eckwood, a popular running back for the Buccaneers from 1979 to 1981. Jerry, now 55 years old, is unable to go grocery shopping, handle his checkbook, function on his own, or often even to speak coherently. His doctor strongly suspects he has dementia, after Jerry’s multiple concussions as a football player.

Gay has worked quickly to build the nonprofit program, which is based in Tampa, Florida. "I have to be made obsolete. The NFL is hoping that I made a one-shot deal in Congress and now I’ll go away. I’m going to fund this through my dying day and beyond. This thing can't die when I die."

Gay's selflessness and drive are particularly laudable because she herself is terminally ill with myelofibrosis, a disorder of the bone marrow that causes severe anemia and kidney failure. Former players admire her toughness and compassion. Former All-Pro tight end Jimmie Giles said, "I've never heard of anybody in football stepping up to the plate like this. This lady, she's like Gandhi to us."

Read another NFL concussion story. Thanks to Alan Schwarz for the source story in the Jan. 22 issue of the New York Times.

Advice to health advocates: Live like Gay Culverhouse.

With no sarcasm at all: Medication compliance and tough love with Lewy Body

Blogger KnittingDoc’s story:
This week I had three very good days in a row. So good that I overblogged on those days. Pam even said, “You’re spending a lot of time on the computer. Why don’t you take a break?” I felt well. So well that on this past Wednesday evening I began to ponder whether I really needed to take all these ‘memory pills.’ ‘Dementia pills.’ Nothing wrong with me. I don’t think I need to take them. I could go to work again. On those days you feel poorly, kick yourself a good one and get going. It’s all in your head (oops, excuse the pun).

So I mentioned it to Pam. A good mistake, I guess. Talking about tough love! The earth shook. The dogs barked. And the wind blew. I ended up stammering, “Yes, yes. I’ll take them and no, I didn’t stop taking them. I swear to God with both hands on the Bible.” Caregivers……..tough love does work! My red face grin.

Later that evening, Chad said goodnight to which I responded, “I hope you don’t die tonight.” In my heart, I was trying and meaning to say, “OK. You have a good night and sleep well.” I walked into the bedroom. Again the earth shook. Pam told me how inappropriate my comment to Chad was. I wasn’t sure what she was talking about.

Evidence of lacking good judgment twice within hours of each other. Before going to bed, she said, “You really did stop your medicine, didn’t you?” I had to convince her that I didn’t. Whether it was poor judgment, word or phrase finding difficulty or just plain not thinking, it wasn’t the real David. Pam reminded me of my past couple of years and the symptoms I’ve shown. She reminded me of my abnormal SPECT scan.

And then the next morning — Thursday. I awakened having slept poorly. I was in a fog and feeling fuzzy. My gait was a little stiff and slow. Good morning, Lewy Body Dementia. I see you’re back. Reality smacked me in the face! With no sarcasm at all, Pam said, “Do you still want to go off the Namenda and Aricept?” I had no retort……..

-David

Advice to spouses and people with Lewy Body Dementia: Be gentle with each other – and use tough love as indicated.

Read another story about a physician suffering from Lewy Body Dementia.

Thanks to Dr. David Thomas for his insight, openness and humor in the source story in his blog post, “Swallow This! Bittersweet Memory Pills.”

Go for it, I say: A loving companion to a husband with dementia

My 79-year-old husband, the love of my life, is having an "affair" with a young single woman named Jenn. He and I fell in love more than half a century ago and have lived together for 22 years, but I have no regrets about the liaison. Go for it, I say. Be my guest.

She's focused, patient, relaxed. These are prime qualifications for my husband's companion, ever since he fell from a sleeping loft four yeas ago and suffered a traumatic brain injury. He was catapulted into a state resembling Alzheimer's Disease, left unable to remember anything that happened from then on or to find his way home from across the street.

Drugs are sometimes prescribed for the typical symptoms of frontal lobe brain injury of agitation, cursing (disinhibition), and combativeness that greet a new companion. But these drugs do nothing to soothe his agitation, and can also produce terrible side effects. Worse, recent studies find that they work no better than placebos in the elderly.

The only reliable treatment for agitation like his is patience, calm, and understanding. Instead of regarding my husband's comments as incoherent rants, as others do, she sees in his dementia a kind of courage: a willingness to call the emperor naked.

Then perhaps it should not have surprised me that before the end of the second week, when other caregivers would just be starting to earn his trust, she reported that he seemed to believe they were having an affair. She realized what was on his mind when he started speaking of his guilt over their "secret."

Not that he ever makes sexual advances or overtures toward her. She's assured me of tat, and I believe her. He loves me more than ever, now that he's dependent. Besides, I'm sure that he, like me, has never been unfaithful.

It's just that without short-term memory to provide context, the events of daily life must seem incomprehensible or absurd, but being human, he can't stop trying to make sense of them anyway.

Still unaware four years later that anything is wrong with him, how should he explain Jenn’s constant presence?

Now that my husband's days are spent in the presence of an attractive like-minded young woman who holds his hand wherever they go and acts like a soul mate, what better explanation can there be than that they're a couple?

Advice to spouses of elderly people with dementia: Do your best to find a loving companion for them.

Read another Alzheimer's story.

Thanks to Alix Kates Shulman for the source article in today's New York Times.

I got my mother back: Overuse of antipsychotic drugs in nursing homes

Last fall, Theresa Lamascola of the Bronx, suffering from anxiety and confusion, was put on the antipsychotic drug Risperdal. When she had trouble walking, her daughter took her to another doctor, who found that she had unrecognized hypothyroidism, a disorder that can contribute to dementia.

She was moved to a nursing home to get the problems under control. But things only got worse. She "was screaming and out of it, drooling on herself and twitching," said her daughter, a nurse. The psychiatrist in the nursing home stopped the Risperdal, which can cause twitching and vocal tics, and prescribed a sedative and two other antipsychotics.

"I knew the drugs were doing this to her," said her daughter. "I told him to stop the medications and stay away from Mom."

Not until another doctor took her off the drugs did she begin to improve. He prescribed Aricept. "It's not clear whether it was getting her hypothyroid and other medical issues finally under control or getting rid of the offending medications. But she had a miraculous turnaround," said the new doctor.

She still has dementia but she went from confinement in a wheelchair – unable to sit still and screaming out in fear – to being able to walk with help, sit peacefully, have some memory and ability to communicate, understand subtleties of conversation and even make jokes.

Or, as her daughter put it, "I got my mother back."

Researchers estimate that one third of all nursing home patients have been given antipsychotic drugs.

Advice to people with elderly relatives in a nursing home: Ask the doctor about alternatives to antipsychotic medicines.

Read another story about drug side-effects in the elderly.

Thanks to Laurie Tarkan for the source article in today's NY Times.