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Author Topic: Decision to die  (Read 1825 times)
okarol
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« on: March 09, 2008, 10:32:45 AM »

Decision to die
89-year-old with kidney failure faces the end unafraid

By Ariel Hansen
Times-News writer

In August, Afton Scofield made a choice.

She chose knowing her family would have difficulty accepting that she wouldn't seek treatment for kidney failure. She chose knowing the treatment would make her life longer, but wouldn't make it better.

Afton chose to die.

"I figured, I've had a good life, I've done a lot of things, I've met a lot of people, I've had a lot of good friends. I just didn't feel like I could ask for anything else," Afton said in November.

The 89-year-old, thin from kidney disease, sat on a pastel striped sofa in her Twin Falls home, a bit weak but quick to offer hospitality. To her right, a refrigerator magnet held up a do-not-resuscitate order, not far from her collection of small, bright teapots mounted above the range.

The former homemaker and grocery clerk, born in a log cabin along an Idaho stretch of the Oregon Trail, didn't know how long she had to live. But Afton was feeling stronger and eating more - including the cakes and sweets she loved to make for her daughters and other family, some of whom visited nearly every day.

That was the hardest part, telling her family.

"I came home and told the kids, and they fell apart," she said. "They said, 'We want you to live longer.' I think they just couldn't think anything else."

Everyone must face death, but Americans have long fought the reaper. Doctors are taught to take extraordinary measures, to wield every weapon in the battle against that final breath.

"To have the patient say 'Stop' or 'Don't do anything,' that's not how we're trained," said Dr. Nagraj Narasimhan, the Twin Falls kidney specialist who gave Afton her mortal diagnosis and presented her options. He advocates helping the patient make the best decision for herself. "Just because we have a procedure or machine doesn't mean we have to use it."

The doctor believes Afton made a measured choice - he used words like "deliberate," "pragmatic" and "appropriate" - when she chose to forgo treatment. A patient her age isn't eligible for a transplant. Dialysis could have extended her life by about five years, but she would have depended on a machine at home or via regular office visits.

"He told me how many hours of my day would be gone, and I just couldn't see it," Afton said of the diagnosis. "I just couldn't see myself wasting my time taking dialysis."

It's early February, the holidays have faded, and Afton's family has just lost its matriarch. The two of Afton's daughters who live in Twin Falls have come to her home, where they nurse cups of coffee at the dining table that hosted their weekly luncheon gabfests.

Instead of a plate of cake, that table holds condolence cards from across the country, laid out in two thick stacks.

Because of the weather, Afton spent her last few weeks at Twin Falls Care Center, where her granddaughter Brit Buffington and Brit's mother, Paula Buffington-Johnson, both work. When she fell on a Sunday morning - possibly a minor stroke, her daughters guess - she was whisked to the emergency room, where local family members met her. Afton was conscious and speaking when daughters Cathie Blevins and Sandee Golay arrived.

"She was talking, she was worried about the insurance," Cathie says.

"And about me," adds Brit, who lived with Afton most of her life. Brit had just had her tonsils removed. "Once I got there, she went to sleep and never woke up."

Before falling into a coma - the way she had hoped she would die - Afton tried to tell her daughters something, but wasn't able to communicate. However, the younger women said they felt their mother wasn't afraid, that she was ready to die.

That Afton didn't struggle in her final days has inspired her daughters to take similar attitudes.

"I didn't have that 'I want to hold onto you for a few more days' feeling. For her, and for the peacefulness of her life and the peacefulness of her death, it was OK that she would be gone," Sandee says.

Cathie gathers the condolence cards, straightening the pile, and sets them aside.

For two days, family continued to gather at Afton's deathbed. They read excerpts of an oral history compiled in earlier years by her eldest daughter, Sheila Turner, who lives in Sweet.

"We read out of her notebook and we talked about the people Mother had known," Cathie says, hands wrapped around the favorite green coffee cup reserved for her at Mother's house.

"We laughed and cried, really we did, we laughed a lot. The nurses all say the last thing to go is the hearing, so I had a feeling Mother could hear us reminiscing," Sandee says. Her voice chokes.

On Tuesday night, Feb. 5, Afton died.

At 89, twice widowed, Afton was familiar with death. Her first husband died of an aneurysm relatively young, and Sandee's son succumbed to a rare form of cancer when he was a teenager. With Afton's diagnosis, however, the death she pondered most during her last months was her mother's.

"She had kidney problems same as I've got," Afton said at home in November. Her mother took an intense sulfa drug to prolong her life, but still suffered and hallucinated. "When my mother was so sick in the hospital, I absolutely prayed she would die in the next few days because I wanted her out of her misery."

Afton didn't want to suffer. And she didn't want her illness to affect her brain. Around the time Afton received the diagnosis, at her weakest stage, her body wasn't properly processing nutrition.

"There was a spell when I couldn't walk, when I couldn't get up off the couch. I couldn't even write my name," she said. Brit tried to show her how, unsuccessfully. "Now that's an awful feeling, to not be able to write your name."

By November, Afton was back to daily crosswords, like the one waiting on a table beside the couch.

After talking with Dr. Narasimhan about the end, Afton understood that kidney disease would likely give her a relatively painless, easy death.

"He said, 'You'll probably sleep it away.' Who can ask for anything better than that?" she said. "Heck, I've lived this long, and I could have a worse disease; I could have cancer and be in pain. I consider myself lucky that I've got the disease I've got."

Afton's doctor agreed that kidney disease isn't a bad way to go, particularly with hospice care at home, but recognized that the determination to die was still difficult.

"It's a brave person who can make that kind of decision," Narasimhan said three months later. "She really weighed the pluses and minuses. She said she'd made peace with everybody in her life."

Afton knew her passing would be hardest on those she left behind, and in her living room in November that was the only topic that brought her close to tears as she contemplated her death.

"I've got an especially good family, and everybody doesn't have that," she said, her voice cracking. "That would be my only regret, that I wouldn't be there for them."

In late February, Afton's three daughters gather around her dining table, looking through their mother's collection of postcards and ephemera. They found the boxes, dusty, on the top shelf of her closet, and are both reminiscing and choosing pieces to cherish. They've already taken home glassware and jewelry: "This ring I have on today was on her finger when she passed away," Sandee says.

They've had a few weeks to mourn, and to be glad for the time they had with her before her death, but it still hurts. Many moments are interrupted for a tissue-dabbed eye or a stifled sob. Cathie pets Afton's orange tabby, Lucky, for whom the family is struggling to find a home.

"We'd already gone through some of the stages of grief," Sandee says. "No matter how much you think you're prepared and have things figured out, you don't."

A burled wood canister on top of the TV cabinet holds Afton's ashes, and the family will scatter them without a service, according to her wishes.

"I told them to just throw them into the wind and let the wind take them," she said in November. She didn't want to be buried, and she didn't want a funeral - desires that go back to her mother's death. "When we buried my mother, it was an awful day, snowy and slick. I just hated leaving her there. I think that was one of the worst experiences of my life, leaving her there in the cold snow. â€- I can't stand the thought of being put in the ground."

Afton made herself clear - how she wanted to die, how she wanted to be remembered, that she wanted her grandchildren to grow up kind and honest - and her daughters are grateful. They had time for last pieces of advice, but now they can ask her no more questions. At her mother's bedside, Cathie was ready to let go, "but I was scared that there would be things we couldn't ask her, like how to do a recipe."

Around the table, the women pick through papers and pamphlets. Some they don't remember, but they know the objects were special to Afton. Others have memories attached.

"Oh my gosh, she kept this. I don't even have this," Sandee says, holding up a newspaper clipping from her own time on the Hansen City Council.

As they sort Afton's things, some are harder to handle. On a side table sit her years of journals, chronicling day-to-day events and her thoughts on life. The women haven't begun reading. "I don't know when I'll be ready," Cathie says.

Not all of Afton's thoughts are written in the journals. Some are on scraps of paper, like this one: "Death ends a life, not a relationship. Dying is one thing to be sad about, living unhappily is another thing to be sad about."

Though tissues are never far from their elbows, Sheila, Sandee and Cathie snicker at a menu from a 1950s governor's ball in Sun Valley and ooh at a beautiful magazine cover. Their humor honors their mother's well-lived life, her well-chosen death.

Ariel Hansen may be reached at ariel.hansen@lee.net or 735-3376.
      ----------------------

Hospice care helps at end of life

Although some terminal patients die in emergency rooms, hospitals or care centers, many are able to spend their last days at home because of hospice care.

In addition to nursing, hospice workers often arrange for meals and cleaning, and help the patient find information about end-of-life issues including wills and final directives.

"I didn't really know what they did, but they're wonderful," said Afton Scofield. Hospice workers visited her regularly in the months before her death, both at home and at the care center where she spent her last weeks.

Doctors, too, value hospice care for their patients. Dr. Nagraj Narasimhan, the kidney specialist who diagnosed Afton's disease, appreciates the connection that hospice maintains between the doctor and the terminal patient.

"Having them let me know what the patient needs is invaluable," he said. "It allows a patient who has given up on life to do it at home in their own surroundings."

http://www.magicvalley.com/articles/2008/03/09/features/family_life/132437.txt
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Mimi
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« Reply #1 on: March 09, 2008, 04:59:18 PM »

Beautiful story.  That's about how I feel, too.

Mimi
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it is putting out the lamp because the dawn has come.
willieandwinnie
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« Reply #2 on: March 09, 2008, 05:08:59 PM »

Touching story okarol. Really makes you think.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #3 on: March 09, 2008, 05:11:08 PM »

A good quote to remember:

"Death ends a life, not a relationship. Dying is one thing to be sad about, living unhappily is another thing to be sad about."
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
ODAT
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« Reply #4 on: March 10, 2008, 10:08:02 AM »

Timely to my topic of whether it's worse to stop dialysis or never start. Maybe if my mother were older - she's only 75 - it'd be easier to accept. I am just talking right now because who knows really what will happen. I will keep this close for when, and if, my mom decides the same thing. It is a good story to share with everyone at that time. thanks okarol  :cuddle;
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« Reply #5 on: March 10, 2008, 11:05:02 AM »

I think if i was 89 i wouldnt want to start dialysis. Age has a lot to do with peoples descisions and wishes.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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