How I Became an Alzheimer’s Advocate and Ended Up as “Barb”

 

So, a great thing happened to me in early 2018. I was asked by the national Alzheimer’s Association to serve in a special volunteer capacity for them (actually, for their advocacy group AIM, which stands for Alzheimer’s Impact Movement).

Specifically, they asked me to be their Ambassador for Florida Congressional District 3, represented by Congressman Ted Yoho. It’s my role to meet with the congressman and to advocate for critical legislation and increased funding for Alzheimer’s research at the National Institutes of Health (NIH). AIM sets the goals, and I educate and persuade Congressman Yoho to get behind those goals.

My first response when they asked me to do this was, “Wow, what a great cause,” and then, “I’m not exactly an expert at convincing politicians to do things – are you sure you want me?”Continue Reading

Part 2, Low Cost of Medications in Peru–Ordering in Spanish

Yesterday I wrote about how inexpensive it is to buy medications in Peru and how you don’t need a prescription for most drugs (apart from narcotics and amphetamines). This system made it easier and more affordable for us to care for my dad with Alzheimer’s while we lived in Lima.

Today I’m going to share a few tips on how to purchase medicines at a Lima pharmacy. These tips are aimed at people who are not Peruvian, especially those whose first language is English.

You know, I’m starting to get more emails from Americans wanting to know how we cared for my father in Peru and wondering if such a move is right for them. Some people who query me have never been to Latin America and, more critically, don’t speak Spanish. They want to know if it’s “necessary” to learn the language in order to get good care there for their loved ones.

The bottom line is, yes, you must speak at least intermediate-level Spanish to be able to coordinate care south of the border. There is no way around that. You’ll need to communicate effectively with caregivers, doctors, and–here’s the point that I was coming to in this post–with pharmacists and people who work at pharmacies.

Peruvian society is very people-oriented and service-oriented, which means you must negotiate transactions face to face, not with a computer or automated check-out service.Continue Reading

Low-cost Medications Are a Bonus for Caregivers in Peru

A customer buys medications in Nortfarma, a Peruvian pharmacy; prices are fixed by a national ministry, and stores that overcharge are fined. (photo: Andina)

In other posts, I’ve written about how affordable home-health aides are in Lima, a benefit that greatly helped our family when caring for my American father in Peru.

Today I want to share another bonus of caregiving in Lima: how medications are sold and dispensed. The Latin American system is so different than the for-profit model used in the United States, it’s shocking–and I mean that in a good way.

Basically, consumers at a Peruvian pharmacy can get almost any medication they want for about 70% less than what it would cost in the United States–without a doctor’s prescription. This savings applies only drugs that are no longer under patent and which are currently manufactured by several companies or as generics. New medications under patent are still full price.

For instance, the memory drug Excelon was still under patent when my father was taking it in 2011, so we had to pay full price (more than US$100 a month) for it in Lima. However, the eight other medications he took daily (Omeprazol, Sertraline, etc.) were available in generic form, and we ended up spending about US$80 a month for all of them together.

The savings were considerable, so we didn’t need his US insurance to cover drug costs. (His prescription plan  didn’t work down in Peru anyway).

I know that some readers are still stuck on that phrase in the third paragraph–“without a doctor’s prescription.”

Yes, that’s right. With the exception of certain drugs (see below), medications are freely dispensed in pharmacies sin receta (without a prescription), and overall, this works to the consumer’s favor in Peru, apart from the hazards of self-medicating. People do go to doctors and get prescriptions, but they aren’t necessary for initial purchase. And this system makes it much easier when you are a caregiver to an elderly person and you have to keep up with lots of refills.

Here is how the ordering process works:

Continue Reading

Dogs in Purple Tutus and Color-Coded Flowers

Two weeks ago, I participated in my first walk for a cause, the Gainesville area Walk to End Alzheimer’s (Oct. 21). I only raised $80, but it was a great experience and it gave me insight into how much coordination goes into events like these. Some observations:

  • Walk to End Alzheimer’s events draw on some very powerful organzing tools, from online marketing tools to at-site features. I didn’t sign up for the march until the day before (!), but within a few hours, the organization had produced a video that I then shared on Facebook and Twitter. Surprisingly, two friends pitched in money, and so I had the pleasure of being able to walk in support of them and their moms, in addition to honoring my dad.
  • Color is everything with these walk-for-a-cause events. I don’t know how the Alzheimer’s movement did it, but they were the first charity to claim royal purple as their color, and this enables them to quickly brand and unite disparate people and events. The official t-shirts were, of course, in this color, but experienced walkers went further with it, sporting pants, caps, and even tutus in this shade. Little kids and dogs were wearing it, as well; no matter who (or what species) you were, you “belonged,” thanks to the unifying effect of color branding.
  • We were given the option of walking either .9 miles or 3 miles, and that flexibility meant that people of varying degrees of physical fitness could participate. Kudos to the organizers for offering those choices.
  • More color branding offered further ways to express support for and experiences with Alzheimer’s. At a big booth next to the stage, you could pick up flower pinwheels in various shades. A purple flower stood for losing a loved one to Alzheimer’s; yellow meant you were currently a caregiver; orange was for supporters, and blue was for dementia sufferers. On stage, speakers would shout out, “Raise your flower if you’ve lost someone to Alzheimer’s,” and a sea of purple flowers rose above, spinning in the morning breeze. It was a simple and meaningful way to honor loved ones and to find commonality with other people.

Continue Reading

Walking to End Alzheimer’s in Gainesville, Oct. 21

Format Video

I’ll be participating in honor of my dad in the 2017 Gainesville Walk to End Alzheimer’s. I’m walking as part of the ALL-IN team from the University of Florida (Aging and Language Labs and Investigators). The team’s goal is $2,500.

If you’d like to learn more about the event, the link to my video below has good information.

http://act.alz.org/site/TR?px=14203473&pg=personal&fr_id=10435&play=1

On my Donations Page, you can learn about why I’m walking. It also gives an opportunity to donate to help end Alzheimer’s, if you feel so inclined. One of my childhood friends just made a donation in my father’s name, which is very moving.

I’ll post about the walk after it’s all done.

 

Exciting News: Interview(s) on HealthCentral!

I’m thrilled to report that HealthCentral, a medical website that focuses on “real stories” of people dealing with illness, has just published a two-part interview with me about caring for my father in Peru. You can read Eldercare Lessons from the Land of the Incas: Part I and Part 2 here.

The interviews can also be found on Minding Our Elders (Part 1, Part 2), which focuses on caregiver and elder support.

I’m grateful to author/editor Carol Bradley Bursak for reaching out to me to learn more about our Peruvian eldercare experience and for helping me share our journey with a national audience. I’ve known Carol for about half a year on Twitter and am a big admirer of her website Minding Our Elders–which is full of useful and very well researched articles on many aspects of the caregiving experience. When she suggested doing the interview for HealthCentral, I jumped at the chance. I answered Carol’s questions via email, and when my answers were effusive, she graciously gave me a two-part story AND ran photos of my father with his healthcare aides.

Thank you, Carol!

Reaching more readers is very important to me. When I learned in Peru is that it is possible to give Alzheimer’s patients compassionate, affordable care, both in the home and in a nursing home setting. The United States isn’t Peru, but certainly aspects of the Peruvian model could be implemented in the U.S. to relieve burdens on caregivers. That’s what this blog is about, and I extremely pleased to be sharing this with more people who want the best for their loved ones.

 

 

Peruvian Cure for a Prickly World War II Vet: La Comunidad

One of the surprises of bringing my 86-year-old father to Peru was seeing how much he ultimately thrived on having lots of human contact. To be blunt, his being doted on by sweet-tempered Peruvian women helped transform him from a vain, self-absorbed, prickly old man into a calm person who was actually kind of nice to be around. (Getting him on antidepressants—which I suspect he had needed for years–also helped.) Being part of la comunidad (the Spanish word for “community”) was an integral part of his emotional care.

Never a physically demonstrative person, my father had lived a rather solitary life in the United States. Widowed at age seventy-seven, he lived alone in a four-bedroom house in northern Florida and resisted having me, Jorge and Sam come live with him when we proposed the idea. His interactions with other people were limited to weekly church services, monthly Masonic meetings and brief transactions with grocery clerks, bank tellers, doctors and nurses. This wasn’t really that big a change from the way he had lived when my mom was alive. For decades my mother had been the center of his emotional life; when she died of lung cancer in 2004, he bought a toy poodle and lavished his affections (and Krispy Kreme donuts) on that. He had no close friends to speak of, just people he had known up north long ago and with whom he exchanged annual Christmas cards.

Moving my father to live with us in Peru put us in a different, more humane, paradigm.

In contrast with the United States—which prizes, above all, independence and individualism—Peru is a country of collectivism. Continue Reading

U.S. Deaths from Alzheimer’s Surge 55%, Says CDC

The healthcare tsunami that is looming over the U.S. became a front-page news story on Friday when national media reported that mortalities from Alzheimer’s have risen 55% since 1999.  And more patients are dying at home rather than in hospitals, which reflects a greater burden being made on caregivers.

CNN, the New York Times, Scientific American and scores of other news outlets cited a new report by researchers from the Centers for Disease Control (CDC) and Georgia State University, which released these figures:

  • 93,541 Americans died from Alzheimer’s disease in 2014, an increase of 55% compared to 1999;
  • In that same period, the percentage of Alzheimer’s patients in the U.S. who died in a nursing-home or hospital setting dropped by more than 50%: from nearly 15% in 1999 to less than 7% in 2014;
  • At-home deaths increased from nearly 14% in 1999 to about 25% in 2014.
  • By 2050, Alzheimer’s is expected to affect 13.8 million U.S. adults, up from 5.5 million in 2017. Translation: Deaths from the disease are going to rise 150%.

The media also broadcast the report’s conclusions that these multiple trends are hitting caregivers with hurricane-like force. Continue Reading

Eldercare Is Easier in a Nonlitigious Society

This quote, by 17th-century French satirist Jean de la Bruyere, might be said to sum up the attitude of many Peruvians toward civil lawsuits.

I knew when we brought my father to Lima in 2011 that it would be cheaper to give him personalized care there. What I didn’t anticipate is how much easier it would be work with doctors, nurses, health aides and hospitals—in contrast with the bureaucracy and complications of the U.S.

After thinking it over, I’ve come to realize what, exactly, made these interactions easier: Peruvian culture is not very litigious. Unlike in the United States, people don’t generally sue others and institutions over civil matters. And when it comes to medical issues, people rarely take doctors or hospitals to court, even when things go very wrong. For instance, the whole seven years I lived in Lima, Continue Reading

How Lima’s Compassionate, Affordable Home Health Aides Saved My Father–And My Family

When my 86-year-old father was diagnosed with Alzheimer’s in early 2011, he was living in northern Florida, and my husband, son and I were working and studying in Lima, Peru. We didn’t have money to put my father in a dementia-care facility, and we knew he needed more than a few hours daily of at-home nursing care. My dad, like everyone with Alzheimer’s, needed help with everything from bathing, to making meals, to remembering to take his medications. Short of moving back to the States without employment there, what could we do, we wondered?

The answer, it turned out, was right in front of our noses: Lima’s plentiful supply of professional home-health aides.

We had seen these young women in white or blue scrubs escorting elderly Limeños through the neighborhood parks—holding their hand as they walked slowly along the sidewalk or pushing them in wheelchairs. We’d also known two of these health aides personally. They had cared for my sister-in-law’s very sick mother for two years in her house. What had always struck me about the aides, or enfermeras técnicas [technical nurses], as they are called, was their patience, attentiveness, and positive outlook. They didn’t rush their patients, they didn’t ignore them to look at their cell phones; they did what had to be done—present, in the moment—and with kindness and good humor.

It clicked in our heads then: These aides would be perfect for caring for an Alzheimer’s patient. Even if they didn’t speak his language.

Cut to the chase: We moved my father to Lima, installed him in a room in the back of our house, and hired two licensed health aides to care for him 24/7.

That was March 2011. Cost for his round-the-clock care? US$670 per month for both aides, plus three meals a day. The two aides rotated shifts.

In future posts, I’ll explain how we found these aides and the legalities of hiring (and firing) domestic workers, as they are considered, in Peru. The important thing is that because my husband knew the city and the culture and spoke Spanish (he was born in Peru), it was easy for us to find excellent help and to arrange a good set-up for my father. We went through a personnel service that my sister-in-law had used, and it ensured that the aides were well trained and licensed, and had passed background and police checks. We had to go through a few ETs until we got the right fit for my dad, but within two months, we had found the ideal aides.

That’s my dad, above, with his enfermera tecnica Erika. Every afternoon they went for a walk in the park, or if he wasn’t up to it, for a ride in a wheelchair. My husband used to say that she had the patience of a saint.

The affordability of at-home care in Lima meant that my father was never alone as he battled Alzheimer’s.  These caring, capable women helped him in the tasks of daily living and stayed calm and upbeat in difficult situations that had me tearing my hair out.  It was brutal seeing my dad go on a hunger strike, as he did when he first came to Lima, and watching him succumb to hallucinations. I was overwhelmed witnessing my father’s suffering, but the health aides had seen it all. They knew that it was going to get better (with the doctor’s help), and they stayed strong in their faith.

His health aides not only saved him—they saved me and my family.

We were more fortunate than many caregivers in the United States, who have to hold down jobs and must patch together care strategies with hourly sitters and/or family members taking turns. My husband and I still spent many hours caring for my father in Lima, but we had the necessary luxury of being able to go up to our room at 10 p.m., shut the door, and sleep through the night without worries. The aides prevented him from wandering all over at 2 a.m. Just that fact alone let us keep a better grip on our sanity.

If there is one thing that caregivers of Alzheimer’s patients need, it’s this: Reliable, experienced help in overseeing the daily tasks of living. Alzheimer’s robs a person of the ability to do even the simplest of things—getting dressed, reading a book, remembering where one’s house is. Until there is a cure for this brutal disease, at-home help should be an affordable option for all Alzheimer’s patients, not just the very rich. Long-term care should be a right for all Americans.

My dad lived just a year and a half after his diagnosis. But that period was filled with caring and compassion. We have his health aides to thank for making those months—his Peruvian Alzheimer’s Adventure–a positive last chapter in his life.

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