Leading Age & Great Minds Award

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Family Caregiver Award Winner – Kathy Ritchie (Primary Caregiver for her mother, a resident of Beatitudes Campus, Phoenix, AZ)The Exceptional Friend or Family Caregiver Award recognizes an individual who has demonstrated outstanding compassion and abilities in one-on-one caregiving for a friend or family member living with dementia.

Unfortunately, I was unable to attend the event in person, but I am tremendously honored to be recognized by Leading Age and the Beatitudes Campus. I am hunting down the video and will post to the blog as soon as I can.

In the meantime, here is my acceptance speech:

This award is a tremendous honor, and I’m incredibly humbled to be on this stage tonight. What I did for my mother, I did, because, at the end of the day, my actions had to sit well with my soul. Simple as that. And that’s why I left one life and started another when I moved home to Arizona in 2009. My mother needed an advocate, and I was determined to do everything in my power to see that she received the best care possible. It certainly wasn’t an easy road, and to this day, I live with the woulda’s, the shoulda’s and the coulda’s… as most caregivers can surely attest, the “what if’s” can keep you up at night! Unfortunately her dementia was unforgiving — my mother spent time at two psychiatric facilities where she was given psychotropic drugs to curb her behaviors, which were the result of her type of dementia; we were asked to leave three assisted living facilities and one adult day care center; and we’ve endured rejections from assisted living facilities… her behaviors meant she wasn’t a good fit.

The thing is, my story is not unique. There are so many families struggling to cope with their loved one’s dementia, and so many of those families lack the financial, emotional and even physical resources needed to adequately care for them. This is the quiet before the tsunami. The number of Americans who develop Alzheimer’s disease is expected to increase significantly — and that’s just one type of dementia. Right now, there is no cure, no way to prevent or slow the onset of Alzheimer’s disease or any other dementia, for that matter. That’s why I put our story out there. I want the world to wake up and realize we need help; we need a cure.

Over three-thousand days have passed since I noticed something was wrong with my mother. Today, she’s nearing the end of this heartbreaking journey. And while there is a very big part of me that wants to close this chapter for good, I can’t. I have a 2 month old daughter and I am determined to continue to be a part of the solution. I hope you’ll join me to raise awareness and to serve as an advocate for those who need it most.

 

The New Yorker Magazine Talks About Dementia

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This week’s New Yorker magazine features a fantastic article by Rebecca Mead called, The Sense of an Ending. I encourage you to read this article, which talks about innovative ways to care for people living with dementia. The star of this story is Tena Alonzo, the director of education and research at the Beatitudes Campus in Phoenix. If you remember, Tena shared her insights about placing a parent with behaviors in an assisted living facility or nursing home with this blog.

Also, please check out Phillip Toledano’s photographs of dementia.

Last summer, Frederick C. Hayes was admitted to the advanced-dementia unit at Jewish Home Lifecare, on West 106th Street. It was not an easy arrival. Hayes, a veteran of the Korean War, had been a trial lawyer for five decades. He was tall, and, though he was in his early eighties, he remained physically imposing, and he had a forceful disposition that had served him well in the courtroom. One of his closest friends liked to say that if things were peaceful Hayes would start a war, but in war he’d be the best friend you could have.

Hayes practiced law until 2010, when he went to the hospital for a knee operation. While there, he was given a diagnosis of Alzheimer’s disease. His combative tendencies had become markedly pronounced, and before arriving at Jewish Home he was shuttled among several institutions. Nobody could manage his behavior, even after Haldol, a powerful antipsychotic drug, was prescribed. In the advanced-dementia unit, he appeared to be in considerable discomfort, but when doctors there asked him to characterize his pain, on a scale of one to ten, he insisted that he was not in pain at all. Still, something was clearly wrong: he lashed out at the nurses’ aides, pushing them away and even kicking them. It took three aides to get him changed.

One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking. She crouched next to the bed, and spoke in a quiet, intimate tone. “I’m here to help you—do you hurt anywhere?” she asked, moving her hand gently over his chest, his abdomen, his arms and legs. With each touch, she asked, “Do you hurt here?” When her hand reached his belly, the moaning ceased and Hayes spoke to her. “I hurt so bad,” he said. “I promise you, we are going to fix this,” Alonzo said, and he thanked her. . . .

Subscribe to The New Yorker.

6 Reasons You Should be Scared of Alzheimer’s & Other Dementias

1. Alzheimer’s disease is the sixth leading cause of death in the United States.

2. More than 5 million Americans are living with the disease (I’m guessing this figure does not include Americans living with other types of dementias like FTD).

3. 1 in 3 seniors dies with Alzheimer’s or another dementia.

4. In 2012, 15.4 million caregivers provided more then 17.5 billion hours of unpaid care valued at $216 billion.

5. Nearly 15% of caregivers for people with Alzheimer’s or another dementia are long-distance caregivers.

6. In 2013, Alzheimer’s will cost the nation $203 billion. This number is expected to rise to $1.2 trillion by 2050.

If you haven’t been touched by dementia, you will be. It’s only a matter of time. If you have, then you know more needs to be done in terms of funding and research. WE NEED A CURE!

President Obama Says the “A” Word: Alzheimer’s

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During President Barack Obama’s State of the Union address last Tuesday, he did something pretty remarkable……………………….. he mentioned Alzheimer’s disease in his speech. That was the first time a president has mentioned Alzheimer’s in his #SOTU in 13 years.

13 YEARS!

That’s a lot of years to be quite on this issue.

“Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s; developing drugs to regenerate damaged organs; devising new material to make batteries ten times more powerful.  Now is not the time to gut these job-creating investments in science and innovation.  Now is the time to reach a level of research and development not seen since the height of the Space Race.”

This mention is a huge step forward in terms of raising awareness of the disease among Americans who have not yet been touched by it. Here’s the thing: We have to make Alzheimer’s disease a big deal. Washington must make this a national priority because Alzheimer’s disease and other dementias (like Frontotemporal dementia, vascular dementia, mixed dementia, Lewy body dementia, etc) will touch everyone in this country, either directly or indirectly…………………………………………………….. remember, calm before the Tsunami.

While we can’t get overly excited by the president’s mention of the disease, it seems pretty obvious that the man knows Alzheimer’s disease and other dementias are problem that will cost our country dearly.

So what can we do to make sure Washington knows to make this disease a priority? Well, for starters, you can send an e-mail.

From the folks at the White House:

President Obama’s State of the Union address is just the beginning; now we want to hear from you. Highlight a passage of the speech that was meaningful to you and tell the President how you’re connected to that issue. Then share that part of the speech with your friends.

Click to link to President Obama’s SOTU. 

Spread the word. Post the link to Facebook, to Twitter, to everywhere you can because we have to do something or our Congress will do nothing.

See: Filibuster. 

How You Can Help Stop Alzheimer’s

Alzheimer’s Registry Aims to Wipe Out Disease

Originally from AARP Blog and posted by 

What if you could play a part in preventing Alzheimer’s disease? Maybe you can. The Phoenix-based Banner Alzheimer’s Institute (BAI) has established an online registry for those at risk of developing a disease affecting more than 5.4 million Americans.

Many signing on are adult sons and daughters involved in the caregiving of a parent with Alzheimer’s. The ultra user-friendly Alzheimer’s Prevention Registry is a national initiative that connects would-be sufferers with researchers. Participants learn the latest developments in the field and have the opportunity to participate in prevention trials. There’s also an online community.

The goal is to get 100,000 people in the registry by next July. Enrollees include Nancy Hetrick, 45, and her three sisters. Hetrick’s father developed early on-set Alzheimer’s in his 50’s. His father (Hetrick’s grandfather) was one of 14 children; all developed the disease.

Hetrick’s mother and her mother’s two siblings also have Alzheimer’s. The younger women plan to participate in any prevention studies for which they’re eligible.

The registry is part of a worldwide effort to tackle a disease that may impact 7.7 million nationwide by 2030.

Research released this month suggests there may be changes in the brain more than two decades before the first signs of Alzheimer’s surface. A study underway between the National Institutes of Health, BAI, the University of Antioquia in Colombia and Genentech is focused on cognitively healthy participants expected to get Alzheimer’s because of family history.

The group is studying 300 Colombians from an extended family who share a rare genetic mutation that usually brings on Alzheimer’s around age 45 and also will involve participants from the United States.

Two Alzheimer’s factoids:

  1. Recent research conducted by Edge Research of 1,024 adults ages 18-75 shows nearly half of American adults have a personal connection to Alzheimer’s
  2. 7 out of 10 worry they or someone they love will have memory loss or Alzheimer’s

Would you consider joining a registry for Alzheimer’s or another disease with a genetic component? What is your biggest worry about getting Alzheimer’s?

Follow Sally Abrahms at www.sallyabrahms.com and on Twitter. Take a look at her November AARP Bulletin story on the emotional side of caregiving.