Archive for the ‘Happiness’ Category

Seeing Less/Enjoying More: Living with Permanent Vision Loss

Monday, October 19th, 2020

Guest blogger Annemarie Cooke in Saudi Arabia, 2017.

by guest blogger Annemarie Cooke

You – or someone you care about – are older, and having trouble reading print. The simple act of scanning a printed page visually is now laborious and slow-going. It’s time to get that checked out with the eye doctor.

After running some tests, the doctor’s declaration is all-too-familiar and goes something like this: “You have age-related macular degeneration, which is the #1 cause of vision loss in people over 60 in the U.S. THERE’S NOTHING I CAN DO. I AM SORRY.

Your heart sinks, the floor figuratively falls out from beneath you. Rage, sorrow, grief…all those stages described by Kubler-Ross run through your mind, seemingly at once.

Blindness is one of the lowest-incidence disabilities in the general population, so it’s likely you may not know or have never met a blind person. That doctor must be right; there’s no magic pill or surgery to fix you. Depending on the kind of eye condition you have there may be vitamin therapy or periodic injections into the eye to stave off the loss of more vision. It’s likely, though, that what you have lost will remain so.

Before we continue here, a disclaimer: I am not a medical professional and this blog is not intended to dispense medical advice. Know, however, that I have been part of the scenario just described and have personally spent too many years being angry at my diagnosis of juvenile macular degeneration. My hope is that my experience may save you lots of time in the adjustment process. And while you might have been told there is nothing to be done, that is not entirely true.

Disability Perception

There are two commonly-held ways that disability (such as blindness) is perceived. One is the medical model: Your vision is diminishing and that eye doc cannot bring it back. That may be the case. Therefore, in some circles, you and your condition represent failure to a medical professional who has been trained to “fix” what is “wrong” with patients. Your eye condition cannot be brought back to 20/20 or whatever your best vision was. So, in a matter of speaking, there is, technically, nothing that medically or surgically can be done.

There is another way, however, that disability is viewed by those of us who have one (or more). Having a disability is just another way to be – a part of the grand spectrum of human diversity. And a disability needs to be accommodated so that a full life can be had, if that is what the person with a disability wants. Many laws guarantee this, including the 1991 Americans with Disabilities Act, granting equal access to public places, documents and the like as a civil right.

Yes, You Can…

After your diagnosis, the next step is YOUR choice. You CAN have a great life, continue many of the activities that brought you joy and satisfaction before your diagnosis. Your part is the willingness to try a new way to achieve the same ends.

For example, you enjoy reading the daily paper, adore certain magazines and relish best-sellers. What now? You can’t see the print sufficiently to read it fluently and comfortably. Know that the digital age brings with it opportunities to get the same content by downloading them or playing CD audiobooks and periodicals. You also can use assistive technology – software that magnifies and changes on-screen print fonts and colors or reads the screen content aloud. These are just some of the examples of what is possible. Do you love to hike, take bike trips, ski or travel around the world? I’ve done all of that with my diminishing sight.

Yes, you’re going to need some new skills, tools and techniques, not to mention emotional support from other people who already have or are walking the same path as you.

“Legal Blindness”

First, have your doctor tell you if you meet the parameters for “legal blindness” (there is, as far as I know, no illegal blindness!), which is that your best vision, with correction, is 20/200. This means that you see at 20 feet what a person without vision loss sees at 200 feet. (Note that I don’t use the term “normal” here; in my life, normal is just a setting on a washing machine, not a classification of the way anyone sees.)

The other element for the classification of legal blindness is a visual radius of 20 degrees or less. This relates to the radius of what your eye can see.

Most people who meet the criteria for legal blindness do see something. Blindness is a spectrum of the range of one’s functional vision. Only 10 to 15 percent of us blind folks see nothing at all.

NJ Commission for the Blind and Visually Impaired

Legal blindness entitles you to services from your state’s agency dedicated to people who are blind or have low vision. So next, contact the NJ Commission for the Blind and Visually Impaired (CBVI), which serves people throughout the lifespan. There are offices in Newark, Freehold and Cherry Hill. Their website is www.state.nj.us/humanservices/cbvi/. Call them at 973-648-3333 or toll-free at 1-877-685-8878 and arrange for what is known as an “intake interview.” A caseworker will collect the necessary information and determine whether you need training to continue a job you felt you had to leave because of vision loss, or perhaps you need training for a whole new career, or maybe how to live the life you want.

Have no second thoughts about requesting services from CBVI – you pay taxes and this service is absolutely there for us. Once you become a client, you can get aids and appliances of all sorts, FOR FREE, to make your life easier. A rehabilitation teacher may even come to your home (once the pandemic is over) to help label your stove thermostat, washing machine and the like to make them simpler to use by touch rather than sight.

Support Groups

There also are support groups around the state for people experiencing vision loss. Find one local to you by contacting Susan Vanino, the social worker at CBVI who coordinates the program, at 973-648-2821. You can also email [email protected].

Support groups can be so helpful. Their members also are experiencing vision loss and some of the best tricks of the trade, so to speak, come from others who are a few steps ahead on the path. (Many groups continue to meet by conference call, Zoom or similar platforms to keep everyone safe and healthy.)

National Federation of the Blind of NJ

One of the best resources available is the National Federation of the Blind of New Jersey (NFBNJ), part of the National Federation of the Blind based in Baltimore. Check them out at www.nfbnj.org. I proudly serve on their Board. Be sure to look at the Senior Division at www.nfbnj.org/chapters-and-divisions/seniors/. This group meets by phone at 7 p.m. on the third Monday of every month. Annual dues are $5.

The 2020 NFBNJ State Convention, taking place Nov. 18 to 21, is virtual this year, and I highly recommend it. It’s free but you must register in advance at www.nfbnj.org/state-convention/. You’ll hear from engaging and informative speakers and learn about the latest in technology, including Smartphones that read the screen content aloud, dial the phone by voice and even coach you on taking a well-framed photo with its camera.

This brief blog easily could become a book so I will stop here. Remember, whether you are diagnosed with macular degeneration or a similar cause of vision loss, the choice of how you will respond is up to you. Be willing to achieve the same ends by using different means. It really works!

I’m happy to answer any questions or receive your comments about this blog. Please leave them here or if you’d prefer, email them to NJFA Communications Manager Sue Brooks at [email protected]. Include your contact information and I’ll reply.

Annemarie Cooke began losing central vision in early adulthood. She has Stargart’s Maculopathy, a congenital form of macular degeneration. A graduate of Douglass College of Rutgers University, she’s a former award-winning investigative and feature reporter for the Daily Home News (now the Home News Tribune). She later joined Recording for the Blind & Dyslexic (now Learning Ally), where her advocacy work often took her to Washington, D.C. She notes that the advances in assistive technology, combined with the wisdom and fellowship found in several support groups and the National Federation of the Blind of New Jersey, have helped her grow into a  confident mentor in a state transition program for blind and visually impaired NJ high school students. Annemarie and her husband are semi-retired and live in a 55+ community in Burlington County, NJ, where she leads a support group for seniors with vision loss.

Caregiving by the Numbers

Monday, March 30th, 2020

See resources at the end of this blog, including information for caregiving during COVID-19. 

A Caregiving Report by AARP’s Susan Reinhard and Lynn Friss Feinberg revealed that in 2017, about 41 million family caregivers in the U.S. provided an estimated 34 billion hours of care to an adult with limitations in daily activities. Support included basic functional activities (such as help with eating and bathing), household chores (such as meal preparation and help with shopping), and medical/nursing tasks, to help individuals remain in their homes and communities for as long as possible.

The estimated economic value of their unpaid contributions was approximately $470 billion. By comparison, all out-of-pocket spending on U.S. health care in 2017 was only $366 billion.

Here in the Garden State, nearly 2 million New Jersey residents — this writer included — provide varying degrees of unreimbursed care to family members or friends who are elderly or disabled and limited in their daily activities. Another AARP report noted that the services caregivers provided in the state had an annual value of more than $13 billion.

The prospect that someone will be a caregiver, or potentially need a caregiver, by 2030 is great because the nation’s population is changing and will mark a significant demographic turning point by then, according to the U.S. Census Bureau’s 2017 National Population Projections.

The year 2030 is when all baby boomers will be older than age 65 — meaning that one in every five U.S. residents in 2030 will be of “retirement age.”

In a press release revised in Oct. 2019, Jonathan Vespa, a demographer with the U.S. Census Bureau, said, “The aging of baby boomers means that within just a couple decades, older people are projected to outnumber children for the first time in U.S. history. By 2034, there will be 77.0 million people 65 years and older compared to 76.5 million under the age of 18.”

When it comes to being a caregiver, there appears to be few age boundaries. Of these nearly 41 million family caregivers nationwide, the majority are in their 40s and 50s, AARP reports, but about 1 in 4 is part of the millennial generation.

Conversely, a recent story in the Daily Record of Morris County spotlighted the 100th birthday of Carmela “Millie” Scarnato. A newly minted centenarian, Scarnato is still a caregiver for her son with special needs, who is 57.

COSTS AND CHALLENGES

The work of a caregiver, AARP notes, can often morph into a part-time job or more, and cost caregivers more than $600,000 in lost wages and missed Social Security benefits over a lifetime.

One of the greatest challenges of family caregivers though is training, noted Forbes Senior Contributor Howard Gleckman in his article titled “Compassion isn’t enough for family caregivers. They need training too.” Gleckman contends that family caregivers often provide aid with lots of love and compassion, but zero skills.

“That lack of training makes their lives more difficult and makes it more likely that those they are caring for will fall, get infections, or suffer from dehydration or malnutrition,” Gleckman says in the article. “And as family members increasingly are expected to provide nurse-like wound care or complex medication management, their need for training is even greater.”

Gleckman cites a study published in JAMA Internal Medicine indicating that 93 percent of family members caring for an older adult said they had never been taught how to do this difficult work.

WHAT’S HAPPENING IN TRENTON

In 2018, a bill was signed into law creating the New Jersey Caregiver Task Force to evaluate caregiver support services in the State and provide “recommendations for the improvement and expansion of such services ensuring that New Jersey is doing all it can to support caregivers who provide invaluable services to loved ones and friends.”

The NJ Caregiver Task Force consists of representatives from the public and private sectors.

“Studies show that the emotional and physical health of caregivers often suffers as a result of the stress and physical demands they encounter, particularly when it comes to caring for people with dementia or Alzheimer’s,” said Assemblywoman Vainieri Huttle, a co-sponsor of the bill, in a press release. “This task force will take an honest look at how we can better address these needs.”

The Task Force will:

  • Identify and survey caregivers in the state, in order to develop an aggregate summary of caregiver characteristics, including age, geographic location, the amount of time spent in caregiving activities and acting in the caregiver role.
  • Solicit testimony from caregivers on the nature and type of tasks they perform; the feasibility of task delegation; the availability and sufficiency of caregiver training programs, financial support services.
  • Submit a report to the Governor and the Legislature detailing its findings and providing recommendations for legislation, or for regulatory or programmatic changes.

“Caregivers devote their lives to their loved ones, often missing work and missing out on wages, and this is going to become more of a concern in the coming years with an aging population,” noted Task Force member and Commissioner, New Jersey Department of Human Services, Carole Johnson.

HELPFUL INFORMATION

If you’re a caregiver, or will soon become one, consider the following:

  1. Hire an elder-care attorney to draw up financial and medical power of attorney documents, plus determine if a loved one is eligible for other services. Watch episode 86 of NJFA’s “Aging Insights” TV program, “The Three Most Important Documents,” at https://youtu.be/axmetvdDQQ8
  2. Learn about expanded paid time off for caregivers. Watch “Take the Time You Need,” episode 95 of NJFA’s “Aging Insights,” at https://youtu.be/gJrnqz_Mehc
  3. View “Giving and Getting Support, episode 99 of “Aging Insights,” which is devoted to caregiving, at https://youtu.be/9T5ObyIkdRQ
  4. Visit NJ’s county-by-county Aging & Disability Resource Connection/Area Agency on Aging (ADRC/AAA) for resources  https://www.state.nj.us/humanservices/doas/home/saaaa.html
  5. Caring for a veteran? Check out resources available through Veterans Affairs at https://www.nj.gov/military/veterans/benefits-resources/
  6. Become familiar with the CARE (Caregiver Advise Record Enable) Act, which was enacted to help the growing number of family caregivers know what to do/how to do it after a parent or older loved one’s hospitalization. [Download a wallet card at https://www.aarp.org/caregiving/local/info-2017/care-act-aarp-wallet-card.html]
  7. Social workers and nurses at hospitals and medical practices who are treating your loved one can suggest appropriate local services.
  8. Visit the AARP’s caregiving resource area https://www.aarp.org/caregiving/
  9. Visit the Family Caregiver Alliance for NJ https://www.caregiver.org/state-list-views?field_state_tid=89
  10. Read more about caregiver burnout and ideas to help combat it https://www.aginginplace.org/caregiver-burnout/

Here are resources specific to caregiving and the coronavirus:

https://www.johnahartford.org/dissemination-center/view/coronavirus-disease-covid-19-resources-for-older-adults-family-caregivers-and-health-care-providers

https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/coronavirus-caregiving-for-the-elderly

https://www.ncoa.org/covid-19/covid-19-resources-for-older-adults/

REFERENCES

Links to references are in the blog copy.

by Sue Burghard Brooks, Communications Manager for the New Jersey Foundation for Aging. A published author, Sue is also a caregiver for her Dad, who is a nonagenarian veteran and a Mason.

 

 

Aging and happiness

Friday, January 3rd, 2020

(With apologies to beloved game show host Alex Trebek.) Happy New Year! Let’s start 2020 with a “Jeopardy”-esque answer, and you provide the question.

Answer: “According to multiple research studies, our happiest days occur at this age in life.”

Cue the theme music…

OK, time’s up. The correct question? “What is old age?”

Surprised? You’re not alone. Gerontologists and sociologists call this “the paradox of aging.”

Old age, it appears, is often a time defined by peace, gratitude and fulfillment — and not by sorrow, dread and regret, notes author and psychologist Alan D. Castel from the University of California (UC), Los Angeles. In his book Better With Age: The Psychology of Successful Aging, Castel argues that in some ways, our youth and middle years are somewhat of a training period for the unanticipated pleasure of being an older adult.

A landmark longitudinal study across the adult life span — the first of its kind — also reveals that negative emotions, such as anger, anxiety, stress, and frustration, decrease steadily with age, and positive emotions, such as excitement, pride, calm, and elation, remain stable across the life span.

Researchers Susan Charles, professor and chair of psychological science at UC, Irvine, and Margaret Gatz, professor of psychology at University of Southern California (USC), Dornsife, discovered that only the very oldest group they studied registered a slight decline in positive emotions.

When award-winning New York Times reporter John Leland was 55, he began following the lives of six people over age 85, expecting to write about the difficulties associated with growing old. He was also the main caregiver for his octogenarian mother at that time.

That experience changed his understanding of old age, he said, and inspired his book, Happiness is a Choice You Make: Lessons From a Year Among the Oldest Old, a New York Times bestseller.

“When the elders described their lives, they focused not on their declining abilities, but on things they could still do and found rewarding,” Leland wrote in a 2018 New York Times article titled “Want to Be Happy? Think Like an Old Person.”

So why is there still disbelief about aging and happiness?

Researcher Charles admits that when you ask people what they think 80 looks like, they’re likely envisioning dementia and nursing homes.

USC Dornsife’s Norbert Schwarz, provost professor of psychology and marketing, concurs. He says that when we’re evaluating our lives, we tend to focus on the negatives, such as increased frailty, declining independence and health, the loss of loved ones, and eventually, our own demise.

Another common misconception about aging, adds Schwarz, is that increasing awareness of mortality causes unhappiness.

On the contrary. Schwarz states that based on research, activity is tightly tied to the reason why people grow happier as they age. He notes that they may have had jobs they didn’t like and when they retire, they have better days.  Seniors are then spending less time on activities that aren’t very enjoyable and cause higher levels of stress. Additionally, they have more time to spend with others, and “all of that lifts our spirits,” he says.

Leland had a similar experience. “Older people report higher levels of contentment or well-being than teenagers and young adults,” he noted in the “Want to Be Happy? Think Like an Old Person” article he penned.

“The six elders put faces on this statistic,” Leland wrote. “If they were not always gleeful, they were resilient and not paralyzed by the challenges that came their way. All had known loss and survived. None went to a job he did not like, coveted stuff she could not afford, brooded over a slight on the subway or lost sleep over events in the distant future.”

Perhaps now, some won’t look towards the future with a sense of fear and dread — they’ll “think like an old person” and be happy instead!

By NJFA Communications Manager Sue Burghard Brooks

References:

https://dornsife.usc.edu/news/stories/3117/people-get-happier-as-they-age/

https://time.com/5363067/aging-happiness-old-age-psychology/

https://www.nytimes.com/2017/12/29/nyregion/want-to-be-happy-think-like-an-old-person.html

https://www.npr.org/2018/01/24/580212243/reporter-shares-life-lessons-from-a-year-with-the-oldest-old

https://lithub.com/how-the-oldest-of-the-old-taught-me-to-choose-happiness/

Better With Age: The Psychology of Successful Aging and Happiness is a Choice You Make: Lessons From a Year Among the Oldest Old are available through smile.amazon.com. Please select New Jersey Foundation for Aging, Inc. as your charity of choice on smile.amazon.com. Then, every time you make a purchase on the site, AmazonSmile will donate to us, at no cost to you! Thank you!