Early Burdens: Eldercare Falls on Young Shoulders

Suzette Armijo, 30, of Phoenix, right, oversees care of her 86-year-old grandmother, Elizabeth Armijo, left, a retired National Park Service ranger. (Courtesy Suzette Armijo)

By JANE E. ALLEN (@JaneEAllenABC) , ABC News Medical Unit

May 4, 2012

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."

Internet sites like AgingCare.com, which connects caregivers of elderly parents with others, may help this younger caregiving cadre find encouragement, empathy and tips on locating services.

"Other caregivers jump in and help," said Richard Nix, AgingCare.com's 49-year-old executive vice president. The National Stroke Association has launched a free, private Careliving Community with "more than 2,000 caregivers right now," said Taryn Fort, a spokeswoman for the Centennial, Colo.-based organization. Support groups for young caregivers have sprouted within some local chapters of the Alzheimer's Association, said Toni Williams, a spokeswoman for its public policy office in Washington, D.C.
Even the best-laid plans among 20-somethings can be thrown off course by a loved one's catastrophic illness and disability. After graduating from Purdue University in Indiana last May, Lauren Erickson spent six weeks in a competitive pre-medical enrichment program in Cincinnati. In September, she moved to Minneapolis to begin work as a hematology-oncology clinic assistant at Children's Hospitals and Clinics of Minnesota while studying for the Medical College Admission Test, which she hoped to take May 12.


Lauren Erickson, 23, left, moved back home to Prescott, Wis., from Minneapolis, to help care for her dad Jim Erickson, 71, right, following his stroke in March.

 

But on St. Patrick's Day, her father Jim Erickson, 71, suffered a massive stroke at home in Prescott, Wis., which left him unable to speak or move his right side. Because Erickson's mother, 61, was still recuperating from a Feb. 2 hip replacement, the couple's only child stepped in.

"I had to move home and help my Mom," Erickson, 23, said. As a result of new demands on her time, including a significant daily commute to Minneapolis, "I haven't opened an MCAT book or anything," Erickson said. She signed up to take the MCAT in July, but said her taking the test then will depend upon how her father is faring.

Even with a "very helpful" boyfriend and some free counseling through work, Erickson keeps wishing she could do more for her mother. "Through this whole process, I couldn't really break down or cry in front of her. I had to be the strong one." Still, she feels more rushed than ever about achieving her many life goals, including med school admission, "so that I can have my Dad present for all those events."
Having her father David Jenkins nearby was the only solution that Tara Leigh Adams, 28, found acceptable after he suffered a major stroke in November 2010. Adams, married and teaching second grade in Greenville, S.C., raced to her hometown of Charlottesville, Va., to help her 65-year-old father, a widower since Adams was a child.


Tara Leigh Adams, 28, right, a wife, expectant mother and second-grade teacher, moved her father David Jenkins, 65, seated, from Virginia.
 
"I think from the start I kind of, in my heart, knew that was just the way. I always knew he had to be near me," said Adams, who is expecting her first child in October. Aides help her father while she's at work, but once she walks back in the front door, she takes over everything, including getting him to the restroom.
Friends just don't understand, she said. "A lot of people my age look and say 'why do you do this? Why not a nursing home?'"

But for Adams, "there's no other option for me that would ever be as good."

Adams, who calls her husband the "rock that I lean on" said there is no substitute for "waking up and telling my Dad how much I love him in the morning."

PBS Documentary: You’re Looking at Me Like I Live Here and I Don’t

Many of you know the work I do with my Young Advocates group, YAAA! Young Advocates for the Alzheimer's Association.  Kathy Ritchie found me through this group last year and has had her own, massive, family struggles with dementia.  I want to help spread the word about this documentary airing THIS THURSDAY, March 29th, 2012 AT 10PM (check local listings) on PBS.  Anyone able to re-post via Facebook, Twitter, blogs, etc...  Please do so!  Kathy interviewed the filmmaker and her personal blog, www.MyDementedMom.com contains a Q&A with him.  I am sure it is a great documentary and I think and hope it will help shed some light on the disease and what it's like living with it.

Thank you for sharing Kathy!

Film Description:

You’re Looking at Me Like I Live Here and I Don’t is the first documentary filmed exclusively in an Alzheimer’s care unit, told from the perspective of someone suffering from the disease.

Lee Gorewitz's search is for more than a word, or a memory, or a familiar face. It is a quest for understanding. She wanders through her unit. She gazes through windows, examines other residents’ rooms, and strains to see outside the front entrance.

She scours family photographs in her bedroom, unable to identify herself in the pictures. Combing through the items in her closet, she mistakes an everyday outfit for her wedding dress. She finds a birthday card but cannot recognize that she is the “Mom” to whom the card is addressed. Exasperated and missing her children, Lee embraces a make-believe family of stuffed animals.

Although she lacks the ability to grasp memories, Lee’s attempts at recollection demonstrate unusual and poetic candor. Reflecting on her birthplace, she says, “Brooklyn, it’s right behind you.” Regarding her deceased husband, she professes, “How do I even say it? The air — was very good.” Considering love, she intones, “That’s a damn good thing to work with.”

The Science Behind Frontotemporal Dementia

When Times staff photographer Rob Gauthier and I first visited the Bryant family last April to begin reporting a story, (“Little-known brain disease rips apart lives of victim, loved ones,”), about a rare type of dementia, known as frontotemporal dementia, we realized that we needed to explore the science behind the malady. FTD, as the disease is known, is similar to Alzheimer's but affects the front portions of the brain and leads to behavioral problems such as the Bryants experienced with Stu.
I knew about Phineas Gage, the railroad foreman who in 1848 lost the front portion of his brain in a terrible construction accident and who survived as a radically changed man. I had read the work of Hanna and Antonio Damasio, neuroscientists who almost 20 years ago pioneered our understanding of the biology of emotions, and I was eager to see how frontotemporal dementia was being studied to further this research.
In the course of our reporting, Rob and I took a number of trips to UCLA and the West Los Angeles Veterans Affairs hospital to interview Mario Mendez, the physician and neuroscientists treating Stu. In our conversations, Mendez helped us understand what Oliver Sacks meant when he wrote, “Without the great development of the frontal lobes in the human brain, civilization could never have arisen.”
By studying the effects of frontotemporal dementia – and its slow diminishment of personality – Mendez is able to see more clearly the so-called social brain, a portion of our frontal and temporal lobes that plays a role in allowing us to successfully interact with each other and build relationships. Take away this portion of the cortex and we are no longer able to moderate our emotions.
Moderation – the inhibition of emotional impulses – can take the form of empathy and embarrassment and is critical in helping us negotiate complex social environments. Without either, as Rob and I learned during the time we spent with Stu, humans grow untethered to the world, unable to read feelings or behave in an appropriate manner.

By steering the discussion about morality, normally the providence of ethicists and philosophers, away from the symposium and putting it inside the laboratory where thoughts are considered to be not so much conscious choices, but instead reflexes based on a neurological network, Mendez and other neuroscientists are furthering the inquiry into the nature of right and wrong. In this light, religion, family, even Freud's notions of superego, ego and id matter less than biology.

Mendez argues that specific behaviors – not harming another person, respecting hierarchy and authority, accepting communal goals, recognizing equity and fairness – evolved among humans. Good manners, therefore, have as much to do with what we are born with as they do with how we were raised and what our parents taught us.
“Much of the social behavior that we take for granted and that we often consider to be learned or cultural or developmental is actually behavior that is deeply ingrained in the nervous system and in the frontal lobes,” Mendez says.
Consider that the next time you’re in a crowded restaurant and watching the kaleidoscope of interactions. Never mind the ability to speak and communicate. Never mind the opposable thumbs. The frontal lobes make humans human.
 
By Thomas Curwen
February 15, 2012

Diabetes...Dementia... Alzheimer's... Pneumonia

Which one would you rather deal with for most of your life? Which one would you rather die from? Which one would you rather your family have to see you die from? Honestly, I pick the one that takes me the soonest, the one that's the least painful for my family. You know why? Because the way you die is the way they remember you... Okay okay, maybe that's not true for every disease or every person. But I see families every day that lose touch with their loved one because mentally that loved one has left the body a long time ago. I see the amazing memory of a person fade away because of disease and a rotting brain, it's disgusting. It's not fair to that person, not fair to the family, it's not fair for our healthcare system. It's not fair to anyone and it's horrible to see in this world. I see people in their 20s and 30s caring for parents with Alzheimer's, I see grandkids that never knew their grandma could talk, that never knew she could walk... And of course they'll never know the amazing person that used to be there. Their grandparents life and memory will be jumbled with this ridiculous disease. And their parents are too busy trying to care for their grandparents!

I see amazing people that are trying to fight against this disease, against the many forms of dementia. But it's not enough, its just not enough.

What are you going to do? Are you going to read this and go to the next page, play the next game? Good luck, it doesn't discriminate. Half the population over 85. No joke.

www.alz.org

Save the Date for the 2012 Alzheimer's Advocacy Forum in Washington, D.C.

Save the Date! Join us for next year's Forum.

April 23-25, 2012

Renaissance Hotel, D.C.

Registration Fees

Registration fees cover only a portion of the total meeting cost. The Association subsidizes the remainder.

Early bird by March 9 $175

ISTAART members $150
March 9 – April 13 $225

After April 13 and on-site registration $275

Monday only $100

Tuesday only $175

Wednesday only $50

Group Registration Policy and Procedures

For every three fully paid registrations from a group, one free registration will be offered. To qualify for group registration: One person from your group must register all four attendees online (no faxed or e-mailed forms). Group must register at the same time with payment to receive the discount. We will not cancel a pre-registered attendee to join a group registration. All group registrations must be entered at the same time to obtain the group discount.
Cancellation and refunds must be made in writing and must be postmarked, emailed (advocacyforum@alz.org) or faxed (866.699.1235) on or before March 8. All refund requests received by March 8 will be refunded, less a $35 processing fee. No refunds will be made for cancellations received after March 8. No refunds for no-shows.


Registration Methods

Fax

Fax registrations ONLY if payment will be made using a credit card. Do not fax group forms. Your email address must be included on the faxed form. Fax completed registration form to 886.699.1235.

Confirmations

Confirmation letters are sent by email. Please include the email address where you would like to receive the confirmation. Contact Darnella Harris at 312.335.5833 or advocacyforum@alz.org if you do not receive a confirmation.
Pre-Registration

Pre-registrations must be received by Friday, April 13, at 5 p.m. Central. After this time, anyone wishing to register must do so on site at the Advocacy Forum. See registration fee schedule.

Events at Registration

Please indicate on your registration form the meal functions and events you will be attending. All meals will be ticketed. If you wish to make a change to your registration, you may do so by calling 312.335.5833 before April 13 or visit the registration desk on site.

On-Site Registration Hours

Pre-registered attendees may pick up their conference materials, and on-site registrants may complete the registration process, during the following hours:


Monday, April 23 10 a.m.–6 p.m.

Tuesday, April 24 6:30 a.m.–5:30 p.m.

Substitutions

If you are unable to attend but would like to send another person in your place, please email the new information indicating it is a substitution to Darnella Harris at Darnella.Harris@alz.org

For More Information

For registration information, call 312.335.5833 or email advocacyforum@alz.org.

Top 10: Holiday Advice for Caregivers and Other Caregiver News

We’ve been reading so much great advice for caregivers this holiday season, we felt it was worth a blog post just to highlight some of these informative articles. If you’re a caregiver to an aging friend or loved one, take a few minutes to read up on some useful tips that can help you travel your caregiving journey with ease.


1.Ryan Malone, of Inside Elder Care, never fails to impress with his expert insights. His latest blog post talks about the recent Gallup poll that really drills down caregiver statistics in the U.S. Some of them are not surprising, but some will be shocked to learn just how many folks are caring for a loved one these days — and the level of sacrifice they make each day in order to do so.

2.Registered nurse, former caregiver (for her father), current long-distance caregiver (for her mother) and our friend (we’re proud to say!), Shelley Webb of Intentional Caregiver, gives us 11 New Year’s resolutions caregivers can make this holiday season in a guest post for Maturity Matters.

3.If you’re planning to move a loved one in the near future, check out these ten tips from AARP. And for more awesomeness from AARP, read this post if you have a caregiver on your shopping list this holiday season for some excellent caregiver gift ideas. Thinking cruises and spa getaways? Think again: an empathetic ear, a little help. You know, those intangibles that are far more valuable than expensive gifts!

4.Montgomery Media offers tips for caregivers to de-stress this holiday season. Top of the list? Don’t forget to take care of yourself, so you can provide better care for your loved one. We’ve heard it many times, but caregivers get so caught up in caring for loved ones they easily forget this very important task.

5.Tax season is rapidly approaching, and Forbes has some information on tax breaks to help caregivers ease the financial burden.

6.American Medical News talks about how technology can connect doctors and caregivers. Easy communication is critical between the two, as caregivers must stay in control of their loved one’s care needs.

7.The San Francisco Chronicle features a press release covering a new approach to caregiving for the Alzheimer’s/dementia patient. The Pines Education Institute of S.W. Florida partnered with Teepa Snow, a nationally-recognized dementia care expert, to produce a series of educational DVDs to aid caregivers.

8.MSN takes a humorous approach to identifying the signs of Alzheimer’s disease with “7 Signs Santa Has Alzheimer’s.” This light-hearted approach excellently conveys critical signs caregivers and loved ones should look out for, especially if visiting a long-distance aging loved one over the holidays.

9.The holidays are supposed to be a joyous time, yet many aging and disabled adults find themselves with a case of the holiday blues. If your loved one is having a difficult time this holiday season, check out these tips from Care.com to help.

10.La Mesa Courier features a great list of tips for making this holiday season a joyous one for your aging loved ones. Try cooking a special meal together, listening to their stories from the past or taking a nostalgic ride around town.

Alzheimer's and the Importance of Early Detection

Alzheimer's disease is one of the top 10 diseases Americans die from each year, but it is the only one on that list that is expanding as the other causes of death are declining. Alzheimer's disease is a degenerative brain disease and the most common form of dementia.

"Alzheimer's is becoming a more common cause of death as the populations of the United States and other countries age," notes the Alzheimer's Association. "While other major causes of death continue to experience significant declines, those from Alzheimer's continue to rise."

One reason for this difference is that the other leading fatal illnesses are preventable, such as stroke and heart disease, but Alzheimer's cannot be prevented with lifestyle changes. According to the Alzheimer's Association, preliminary data from between 2000 and 2008 showed that deaths attributed to Alzheimer's increased 66 percent, while those attributed to the No. 1 cause of death, heart disease, decreased by 13 percent.

Such statistics make the latest Alzheimer's research so vital for those who suspect they may get the disease, those already suffering from it and their friends and family, who may provide some level of in-home caregiver support during the long course of the disease.

Some of the biggest news about Alzheimer's currently is the importance of early detection.

"Biological changes associated with Alzheimer's disease are thought to begin 10 to 15 or perhaps 20 years before an individual displays symptoms," states Dr. Heather Snyder, senior associate director of medical and scientific relations at the Alzheimer's Association. "But there is no single generally accepted way to identify the disease in its earliest stages -- before symptoms are evident. At the same time, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease."

There are efforts underway to update the diagnostic criteria in a variety of ways, including biomarker measures. This spring, the National Institute on Aging (NIA) and the Alzheimer's Association published new diagnostic criteria guidelines for Alzheimer's disease in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.
You might ask: If the disease cannot currently be stopped or cured, what difference does early detection make?
"The benefits of early detection are many," says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "People who are diagnosed early can participate in the planning of their future -- they can talk to their families about advanced directives, how they want to have their finances handled, what they want to have happen when they can't drive anymore."

Not only does this allow the person with Alzheimer's disease to feel empowered, Kallmyer says, but it's a huge relief to their caregivers and loved ones who otherewise may have to make decisions under a great deal of stress later, when the disease is in its advanced stages.

We recently posted an article on Homewatch Caregivers that pulls from the Alzheimer's Association's own 10 Signs of Alzheimer's list. There is a distinct difference between the signs of normal aging and early Alzheimer's disease. For example, someone may answer the phone and simultaneously put down their keys, then not be able to find them a few minutes later. A normal aging brain will retrace their steps and remember the moment that they answered the phone, whereas an individual with Alzheimer's disease will not remember the phone call or be able to retrace their steps.

Kallmyer points out that the role of an in-home caregiver to someone with Alzheimer's is unique in the length of the disease and increased need. "It starts with helping with memory aides and then ends when the person with Alzheimer's can do nothing for themselves," she says.

Another benefit to early detection of Alzheimer's disease is that the individual can decide if they want to be part of future Alzheimer's research by signing up to participate in clinical trials. "When somebody has a fatal illness, clinical trials can be a great way for them to feel like they are making a change," Kallmyer says. "They might feel like they are making a difference for their kids and grandkids."

Ultimately, with hopes that there will be treatments for Alzheimer's disease, the time to intervene will be in the earliest stages of the brain disease. "This approach envisions what is now common practice in heart disease," says Dr. Snyder. "Where early signs of risk -- for example, in genetic markers or in blood cholesterol and/or blood pressure levels -- can be treated to reduce the chances of heart attack or stroke later on."

Dr. Snyder said there is a lot more research to be done on Alzheimer's disease. "There are many unanswered questions in Alzheimer's disease," she says. "We do not yet know the causes of the disease, we do not know risk factors associated with Alzheimer's disease."

By Leann Reynolds