Tag Archives: Alzheimer’s Association

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.

Q&A With Blondes VS Brunettes PHX player (& Brunette) Kelly Vaughn Kramer

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Photo courtesy of Kelly Vaughn Kramer

When I asked my friend and colleague Kelly Vaughn Kramer to answer a few questions about Alzheimer’s disease and her upcoming Blondes vs. Brunettes Phoenix football game, a volunteer-driven event that helps support the Alzheimer’s Association, her response to one question, in particular, floored me.

ME: Why did you decide to participate in the inaugural Blondes vs. Brunettes event in Scottsdale?

KELLY: I chose to participate in Blondes vs. Brunettes for two reasons: 1. Football is awesome. 2. Football that raises money in support of Alzheimer’s research is even better. Those are the simple reasons. The deeper one is that I’m doing it for you. I’m in awe of what you do for your mother and how passionate you are about the Alzheimer’s Association, your blog and helping people like your mom. I guess in some regard, this is my way of saying thank you. You inspire me.

Until I opened the e-mail containing her reply, I had no idea that she was playing in next Saturday’s inaugural game, in part, because of me.

To be perfectly honest, I simply can’t articulate how her words touched me, so I’m not going to try because I can’t. Even though I’m a writer (allegedly). I mean, who says that? Who does that? Well, turns out, that’s what friends are for. Throughout the years, I have come to rely on a small group of friends for the occasional ear and/or shoulder. Kelly is one of those friends. And because we spend 40+ hours a week together, she is more than aware of my life story. So, whenever the floor has dropped out from under us — (again and again) — and I would come in to work tired and frustrated, or just plain over it, she would be there.

Thank you, Kelly… truly, no words.

Below, Kelly, a player on the brunette team, talks about the disease, her fundraising tactics (she’s raised a lot of money for the Alzheimer’s Association and is still fundraising, so whip out your credit cards), and what she’s learned about this terrible, heart-breaking disease:

Besides my experience, have you been touched by Alzheimer’s disease or other dementias?
I certainly feel closest to your experience, but our nanny’s grandmother also has dementia. Sometimes, she likens helping care for her to caring for children, and that’s an interesting parallel to me — one to which I can certainly relate.

What have you learned about the disease that you found most surprising?
I think the sheer cost of caring for someone with the disease is staggering, and I’m alarmed that there aren’t programs to help mitigate the cost. It’s also disconcerting that Alzheimer’s deaths rose 68 percent between 2000 and 2010. What? That’s an epidemic, in my opinion, and I’m bothered that people don’t seem to pay as much attention to the disease as they do to other diseases.

There are a lot of stats about the effects of caregivers in the workplace and the toll it can take on work performance, etc. As colleagues, you know that I have had to take time off to take care of matters concerning my mom. What advice would you give to employers as more and more caregivers need flexibility to care for their loved ones?
It’s just that — be flexible. Who cares when the work gets done as long as it gets done? Nine to five works in some industries, but not all, and creating a supportive, flexible environment speaks to a progressive company. I also think that employers should foster an environment wherein caregivers feel comfortable talking about what circumstances they face and encourage caregivers to take a little time for themselves, too.

From a friend-standpoint, what advice would you give to those who maybe sometimes don’t know what to say — especially when things are just bad or there’s no clear light at the end of the tunnel?
That’s a tough one, because I think that, as a friend, the instinct is to try to fix what’s wrong. In these cases, you can’t.  But maybe it goes a long way just to say, “Look. I don’t really know what to say. But I need you to know that I’m here to listen.” It’s also important to not take things personally. Caregivers go through a range of emotions, and just because they’re in a slump one day doesn’t mean that it has anything to do with you.

You did some serious fundraising. What tactics did you employ in your fundraising efforts? 
Two words: Email blitz. Basically, I sent an email to most everyone I know and I had my husband send the email to philanthropic people in his company. I also took to social media to encourage people to donate. Even though I’ve surpassed my fundraising goal, I’m not stopping. I’m hoping to raise at least $200 more before the football game, and if I could cross the $1,000 mark, I’d do an end zone dance or two.

At the end of the day, what should people know about Alzheimer’s disease or other dementias?
Alzheimer’s disease and other dementias touch far more people than you might imagine, whether directly or indirectly. That’s why it’s so important to keep having conversations about the disease. Maybe you haven’t had an experience with Alzheimer’s yet, but odds are that you will.

For more information about Blondes vs. Brunettes Phoenix
call: 602-528-0545
e-mail: info@bvbphoenix.org
visit: http://www.bvbphoenix.org.

To help Kelly raise even more money for the Alzheimer’s Association, click here.

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

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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!

Sometimes, the Sharpie is Mightier than the Sword … A Caregiver’s Sidekick

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Purple Sharpie…. for added whimsy

The days are finally cooling off following a blistering summer, and now it’s time to get mom ready for the chillier a.m. temps. Another blanket…. it’ll probably get lost, like they always do…….. still, I label — like an obsessed madwoman, I label everything, leaving little room for mix-ups, even though mix-ups occur and often. I have decided that it might be a good idea to invest in Sharpie stock………………. if you have a loved one in a nursing or assisted living home, you know what I mean. I can’t tell you how many Sharpies I’ve gone through, labeling my mother’s clothes, only to see them on the back of another resident. It happens. Just let it go. Keep on labeling. Indeed, it’s what we do. Yes, it’s just one intsy-wintsy aspect of what we do, but, truly, spend 30 minutes Sharpie-ing clothes, blankets, shoes and you’ll quickly realize, that’s 30 minutes of your life — wasted……………………………. plus the unintended high (or headache) from inhaling Sharpie fumes. I have lots of Sharpies. Frankly, I think the Alzheimer’s Association should sell purple Sharpies since we all need Sharpies…………. what a great way to raise money — I mean, they would make such fantastic stocking stuffers…………… and with the increased number of people set to develop the disease, well, Sharpies are certainly going to be in demand. Sharpie probably has no idea how valuable their product is to caregivers……………………. and really, they ought to donated $$$$ to the Alzheimer’s Association and/or other organizations around the globe that are committed to finding an effective treatment……………….after all, we’re a unique segment of Sharpie’s business, help a sister out!

When I buy a Sharpie, I buy it for color — will it show up on her clothes or a thick blanket? — and girth. I like thicker Sharpies. They get the job done more efficiently as you can see by the above photograph, plus it holds up when washed repeatedly. Of course, when I’m feeling fabulous, I opt for silver……………….. unfortunately, it doesn’t always show up so well, nor does it hold up following multiple washings, but it just feels magical. I know what your thinking, but hush. It’s my silver lining. Let’s face it, there is no happy ending at the end of this grim fairy tale, no light at the end of the tunnel…………………………. nothing……………………. but this grotesque disease……………. and if all it takes is a silver Sharpie to please me, so be it.

And besides, our days our numbered. My mom has a chest cold with a mucousy cough……….. I don’t know if it’ll get worse.

What I do know is that nature will take its course………………………. her maker will decide what happens next.

End Days: Talking to My Mom

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Me & Mom

I don’t know how to talk to my mom. When I visit here, I usually sit there and hold her hand. I’ll say prayers, I’ll tell her not to be afraid, I’ll tell her I love her, but mostly, I just sit there. I don’t know what to say…………………… I can’t find the words. I want to tell her about my life, but it just feels absolutely ridiculous. I tried to read to her, but it feels contrived. If she can’t remember how to swallow her food, how could she possibly comprehend what I’m saying………………….. I am, by nature, a pessimist. The glass will always be mostly empty save a few drops. I don’t believe she can understand me. I don’t believe she “gets” my words — the words where I tell her about day, my struggles, my joys, my fears and frustrations.

It’s been so many years since I’ve actually talked to my mom……………….. before her disease consumed her brain.

Frankly, I think the grey matter that deciphers what comes out of my mouth into images and ideas has been turned to complete mush.

I love my mom. I miss my mom. But I can’t talk to her. I just don’t know how.

My Friend Suzette Armijo on ABC… “Early Burdens: Eldercare Falls on Young Shoulders”

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Photo courtesy of Suzette Armijo

I’ve known Suzette Armijo  for over a year now…. we met through the Alzheimer’s Association and YAAA! or Young Adults for Alzheimer’s Awareness…. Suzette is the primary caregiver for her grandmother who has Alzheimer’s. She’s also the mother of a sweet little boy and she works full-time…. this girl has her hands full, but she never flinches and she always makes time for others who need her help (like me when my mom was asked to leave our first home). Suzette is ferociously dedicated to this cause……. she wants to end Alzheimer’s disease and other types of dementia; and recently, she spent a few days in Washington DC talking to members of the House and Senate about Alzheimer’s-related legislation.

This girl is a machine!

Suzette was recently interviewed by ABC News about her story……… You know, being a full-time everything: young adult caregiver, parent, employee, volunteer, friend, sister…………………………

Please support Suzette and her tremendous efforts by reposting this ABC News story on your blog, Facebook or Twitter.

By Jane E. Allen

At 30, Suzette Armijo cares for her widowed 86-year-old grandmother, a retired National Park Service ranger in the final stages of Alzheimer’s disease, while holding down a fulltime job, a part-time job and raising a 4-year-old son.

“This was nothing that I had planned for,” says Armijo, who moved her grandmother Elizabeth Armijo into a nearby six-bed assisted living home because veterans’ benefits “wouldn’t pay for her to live with me.” Still, she says, “I have to do everything for her, aside from her bathing. There’s always something new going on with her medically.”

Besides her fulltime marketing job with a Phoenix retirement community, Armijo supplements her income with outside consulting because “I do have to pay a portion of Grandma’s bills.”

Although she doesn’t know anyone else her age doing what she’s doing, she comes to her caregiving out of love for a woman who took care of so many others: “I don’t feel torn because I know this is the way my Grandma was,” Armijo said Thursday. “She took care of her parents. She took care of my grandfather. She took care of my little brother who had cancer when he was little. I grew up seeing that.”

Suzette Armijo is among a generation of young adult caregivers, the majority of whom are women, navigating tough turf without a roadmap. Few of their contemporaries shoulder equivalent responsibilities. Members of the so-called sandwich generation, squeezed by parental caregiving and child-rearing, are a good 20 to 30 years older. As they try to tap into resources to help an ailing grandmother, Mom or Dad, these 20-somethings and 30-somethings are often on a lonely road. Armijo said she’s drawn some of her strength from establishing a local young advocates group through the Alzheimer’s Association. “You have to find something for yourself, otherwise you lose your mind.”