Archive for the ‘Coronavirus’ 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.

“2020 Vision for Successful Aging”

Tuesday, September 8th, 2020

aging elders seniorsNJ Foundation for Aging is honored that the North Jersey Alliance of Age-Friendly Communities, a partner organization, wrote about their impressions of our 22nd annual conference and shared them with us as a guest blog.


Mornings on the golf course. Weekends with the grandkids. Vacations to dreamed-of destinations.

These are the visions of “successful aging” in many people’s minds, reflections of the one-dimensional view of growing old that is all too pervasive in our culture.

Not that those pretty images of retirement life aren’t experiences that people should desire. But without taking a deeper look at all the potential challenges and opportunities of growing older, many individuals will fail to anticipate later-in-life needs and desires.

In its advocacy work, the New Jersey Foundation for Aging routinely seeks to widen the lens that society trains on the lives and livelihoods of older adults, and the organization’s annual conference this year succeeded in doing just that.

Titled “2020 Vision for Successful Aging,” the conference, held virtually on Aug. 13 and 14, featured presentations on how aging intersects with a range of other policy issues from climate change to LGBTQ rights to immigration policies.

The conference also sought to open attendees’ eyes to the ways in which ageism is so widely normalized and internalized that it can often lead to us making uninformed individual and societal decisions that limit older adults’ choices in later years.

LONGEVITY COSTS

In a keynote address, Cynthia Hutchins, director of financial gerontology for Bank of America Merrill, said people shouldn’t avoid thinking about uncomfortable questions such as how long they might live and whether they will need some form of caregiving at some point.

“Longevity has changed the way we plan for our health and our health-care needs,” Hutchins said.

prolonged health care

Previous generations didn’t envision living decades in retirement, but Baby Boomers and the generations that come after them will need to have a better understanding of such things as the limits of Medicare, the different options for long-term care, and how the financial and lifestyle choices they make early on can affect future health and happiness, Hutchins said.

In her presentation, Hutchins pointed out that, although one’s future health might be an unknown, there are useful projections individuals need to be aware of, such as that out-of-pocket health care costs between the ages of 65 and 80 can equal $114,000, and then grow to $247,000 by age 90 and $458,000 by age 100.

Figures like these might seem unbelievable to the average individual, but failing to adequately discuss and plan for future scenarios is what often leads to individuals having inadequate plans, and our government institutions having inadequate policies for the aging of the population.

At the root of our society’s unpreparedness for aging is often ageism, which includes the “prejudice against our future selves” that many of us possess.

Ageism was a focus of several workshops at the two-day conference, some of which examined how it can evolve into elder abuse or translate into a lack of advocacy on key issues that older adults and their advocates should be speaking about more often.

CLIMATE CHANGE + AGING

Climate change is foremost among those issues. Often portrayed as an issue of more concern to younger people worried about the future, what’s often overlooked is the fact that older people are the ones who tend to suffer the most harm from the severe storms and climbing temperatures that are already the result of our warming planet.

climate change and agingJeanne Herb of the New Jersey Climate Change Resource Center at Rutgers University shared data showing that older people are at more risk of heat-related hospitalizations and more likely to have chronic conditions exacerbated by severe weather and the power outages and service interruptions that can result from them.

Similarly, older adults and their advocates need to be aware of how immigrants and people in the LGBTQ community are subject to more discrimination and barriers to housing and supportive services as they age, other panelists at the conference argued.

AGEISM/STEREOTYPES

In addition, the coronavirus pandemic has brought to light the way ageism, and bias toward disenfranchised groups, can lead to alarming disparities in disease exposure and treatment outcomes and to the many gaps and weaknesses in New Jersey’s long-term care systems, many speakers pointed out.

Organizers of the conference hoped that it would serve as a call to action, and ideas were shared on how to combat ageism with intergenerational programming and through the arts.

Katie York, director of Lifelong Montclair and the township’s senior services department, described the results of a study she helped guide on how performing arts programs can help lessen age stereotypes among young and old.

ageism, age-friendly communitiesThe study entailed recruiting 72 individuals – ranging in age from 20 to 82 – to perform in skits that reflected age stereotypes. Afterward, participants were surveyed on whether the performances had altered their perceptions of aging and generational differences.

As director of Lifelong Montclair, a now-five-year-old age-friendly community initiative, York said she has come to “recognize the need for culture change as a foundational element of age-friendly efforts.

“As more people understand the scope and value of our work on culture change, I believe our work will be that much more significant, and those battles we face along the way will be that much easier,” York said.

Julia Stoumbos, director of aging-in-place programs for The Henry & Marilyn Taub Foundation, said the NJFA conference provided many useful insights into how the leaders of age-friendly communities can help change views of aging, and also the steps that community leaders take to support the goal of aging in comfort, dignity, and safety.

“Often, the approach that communities take in addressing the needs of older adults is compartmentalized. There’s a big emphasis on leisure and recreation – planning Zumba classes and bus trips to Atlantic City.  There’s also a tendency to medicalize old age, with programs focused on how to combat it or treat it like a disease.” ~ Julia Stoumbos, director of aging-in-place programs for The Henry & Marilyn Taub Foundation

“Often, the approach that communities take in addressing the needs of older adults is compartmentalized,” Stoumbos said. “There’s a big emphasis on leisure and recreation – planning Zumba classes and bus trips to Atlantic City.  There’s also a tendency to medicalize old age, with programs focused on how to combat it or treat it like a disease.

“Those narrow approaches can sometimes lead to older adults being treated as if they are separate from the rest of the community, as if they are less invested in issues that affect all people at all ages,” Stoumbos said.

“Older adults have no less of a stake in the major issues of the day. They need to be empowered to stay engaged on these subjects, and communities need to make sure they are bringing the generations together in conversations about the weighty issues that affect quality-of-life for all.”


The age-friendly movement was first envisioned by the World Health Organization in 2005 as a way to find local strategies to prepare for the global challenges and opportunities of an aging population. The North Jersey Alliance of Age-Friendly Communities is supported by The Henry & Marilyn Taub Foundation and the Grotta Fund for Senior Care. Together those foundations are funding age-friendly initiatives in 16 communities in five counties – Bergen, Essex, Morris, Passaic and Union – which together have a population of more than a half-million people. The alliance also works in partnership with NJFA, AARP New Jersey, New Jersey Future and Rutgers University.

Grandparents Stepping Up to Assist Grandchildren with Virtual Education

Thursday, June 11th, 2020

 

Dr. Charisse Smith

As a young child growing up in New Jersey, I recall spending countless summers in the sandy woods of Wall Township with my maternal grandmother, Carolyn Holland.

On her screened-in porch, we spent hours playing such card games as Pitty Pat, War and Casino. This card shark, with less than an eighth-grade education, showed me no mercy, winning game after game! Through these card games, she fortuitously taught me how to quickly identify numbered groups (subitizing*) and strategy (critical thinking).

My paternal grandfather, Robert E. West of Neptune, instructed me in the art of applying the correct tip for great service at the local Perkins Pancake House. Maternal aunt Doris Sergeant of Asbury Park cultivated my love of reading and storytelling through her reading aloud. Her fluctuating animated voice magically fit each and every character of the stories she read.

As I reminisce about these special moments as a wide-eyed, inquisitive youngster, I now appreciate them as authentic learning experiences. I truly cannot recall specific reading or math lessons or feeling that these moments were “school,” but as an educator, I recognize that the benefits of simple card games and stories read to me set me on the path toward academic success.

Although I assist teachers in applying curriculum and best-teaching practices to classrooms, the simple games, conversations and nightly read-alouds with Carolyn, Robert and Doris were invaluable.

COVID-19 and virtual teaching/learning

According to the New Jersey Department of Education, there are approximately 2,734,950 students in New Jersey’s public and charter schools who are now participating in some form of virtual or remote learning due to the COVID-19 crisis. Many New Jersey schools pivoted from photocopied worksheets and packets to working exclusively online with students in virtual classrooms.

In a matter of a few weeks, New Jersey school districts found themselves quickly gathering their troops of learning experts, teachers and educational technology departments to provide quality learning opportunities for all of their students. Families also found themselves banding together to navigate through digital learning platforms like Zoom, Google Classroom, Google Meets, Microsoft Teams, Class Dojo, Canvas and Blackboard.

Older Americans are teaching/learning, too

Older Americans also fearlessly accepted the call to join the ranks of the virtual homeschooling faculty. Because many parents continue to work as essential workers, older adult family members have been designated as the at-home schoolteacher. These older family members are ensuring that children are logging on, participating and completing school assignments.

One example is a 68-year-old grandmother in Mercer County’s Hamilton Township, Mrs. Jones. She joined the ranks of homeschoolers this March. Mrs. Jones is not only caring for her ill husband, but by working in online learning platforms to assist her kindergarten-aged grandson, has expanded her technological skill set.

Through perseverance and a little bit of coaching, Mrs. Jones is now more comfortable helping her grandson with the daily requirements of cyber-learning such as logging on to online class meetings; monitoring reading, writing, and math assignments in Google Classroom; accessing books online; following up with emails, and communicating with teachers via the Class Dojo app.

Familiarizing oneself with multiple learning platforms can be overwhelming even for the most tech-savvy person. But older Americans, like Mrs. Jones, are courageously balancing the duties of being a caregiver for an ailing spouse, running a household and homeschooling an active kindergartener.

I admire Mrs. Jones for her tenacity and grit during this challenging time. She admits that working with technology is frustrating, and she felt like giving up, but I encouraged her to take care of herself and to do her best. Her best is amazing!

Other ways older adults can share knowledge/expertise

I encourage all older adults who are caring for and/or homeschooling young family members to share their knowledge and expertise by:

  • Having conversations
  • Counting and grouping the number of tiles on the floor
  • Finding a pattern in the carpet
    • *I mentioned subitizing before. Subitizing is a hot topic in math education circles. It means “instantly seeing how many.” Math educators have discovered that the ability to see numbers in patterns is the foundation of strong number sense. Visit https://mylearningspringboard.com/subitizing/
  • Following a recipe using measuring spoons and cups
  • Writing a song together and recording Tik-Tok videos of you singing
  • Coloring in coloring books
  • Listening to books on tape or online together
    • This website features videos of actors reading children’s books, alongside creatively produced illustrations. Activity guides are available for each book. https://www.storylineonline.net/
  • Teaching them how to play a card game

Other resources to use

Older adults have much to give and young people, much to receive! I would dare to guess that there are many Mrs. Joneses here in New Jersey. Are you one? You deserve our gratitude, respect and support.

As a New Jersey educator, I would like to thank all of the caring and brave older Americans in our state who are committed to sharing their knowledge, wisdom, love and expertise to help our students continue to grow and learn!

Dr. Smith is the featured guest on Episode 106 of Aging Insights, with host Melissa Chalker — watch “Learning Together” now!

Dr. Charisse Smith of Trenton earned a Ph.D. in Education with a specialization in Professional Studies. She serves on the boards of New Jersey Foundation for Aging and Notre Dame High School, is an Instructional Coach with the Hamilton Township Public Schools, President of ETE-Excellence Through Education of Hamilton Township and is the owner of Sankofa Educational Consulting, LLC.  Dr. Smith proudly notes that she has been married for 23 years and has two beautiful children!

 

The COVID-19 Crisis at NJ’s Long-Term Care Facilities

Wednesday, May 20th, 2020


We’d like to thank guest blogger and NJFA friend
Laurie Facciarossa Brewer, NJ’s Long-Term Care Ombudsman, for her blog post.

By Laurie Facciarossa Brewer, NJ’s Long-Term Care Ombudsman

The COVID-19 crisis in long-term care facilities is an unprecedented national tragedy. Around the country, tens of thousands of vulnerable residents of nursing homes and assisted living facilities have died.

In fact, as of today in New Jersey, more than 5,400 long-term care residents have lost their lives due to the pandemic. To better put this into perspective, these deaths are more than half of New Jersey’s total cases.

Not only are the numbers themselves horrifying, but the inability of family and friends to physically be there with their loved ones in their final moments-as facilities were locked down to attempt to prevent more infection-makes it all the more painful and traumatic.

I mourn and hold dear the loss of each of these residents and wish peace and healing for their loved ones. And I am deeply concerned about the health and welfare of the long-term care residents who remain, and about the staff who care for them.

As an independent state agency that advocates for long-term care residents by investigating allegations of abuse and mistreatment, the New Jersey Office of the Long-Term Care (NJ LTCO) Ombudsman has been in the forefront in attempting to help residents and families deal with any issues or problems they may be having during this health emergency.

The investigation process

Usually, when we receive a complaint or concern, we make an unannounced visit to the resident in question and obtain consent to do an investigation.

Unfortunately, those visits stopped on March 13 when the federal and state government decided to severely restrict any visits to long-term care facilities, including by state regulators, families and representatives of the Ombudsman program.

The sudden inability to go into the facilities to witness what was happening there–to see firsthand the staffing levels and the physical conditions­­–and to have to rely on phone calls, FaceTime and other technologies to gain insight into what was truly happening, was very jarring and required some out-of-the-box thinking.

Fortunately, the NJ LTCO has highly seasoned and experienced investigators who have deep contacts in, and experience with, long-term care facilities in New Jersey.

In addition, the NJ LTCO has more than 200 highly trained volunteer ombudsmen assigned to an equal number of nursing homes. Under normal circumstances, these volunteers would be in their assigned nursing home every week, speaking with residents and handling their concerns.

So, even though we are not visiting LTC facilities, the NJ LTCO is well-positioned to reach deep into a facility and identify the right person who can solve problems for residents and their families.

Our volunteers continue to keep in contact with residents in nursing homes and have distributed letters reminding residents that the NJ LTCO is still here to assist them with any problems they may be having.

The dramatic increase in calls and cases

Our investigators have never been busier.

During March and April, calls to the NJ LTCO intake line increased by 40 percent, as did the number of cases opened for investigation.

The types of complaints that we have been receiving reflect the deepening crisis in long-term care. Here are some examples:

  • A woman called to tell us that her 56-year-old sister was on a ventilator, fighting for her life after being diagnosed with COVID-19. The long-term care facility in which her sister lived, she alleged, had refused to send her sister to the hospital.
  • A 71-year-old, bed-bound resident called the NJ LTCO to complain that she was not receiving her medication and that she hadn’t been changed–and was sitting in her own urine for more than 24 hours.
  • A nurse called to tell us that she was the only one who showed up to care for more than 60 residents during an evening shift in a nursing home.
  • A man called to see if we could find his mother, who was COVID-19-positive, had a fever and had been hurriedly moved out of her nursing into another one–with no advance notice to the family. He didn’t know if his mother was dead or alive.
  • A family member called to report that he was informed that his father had a fever, that COVID-19 was suspected and that he was fine. He was called 90 minutes later and told that his father had died.
  • Multiple staff members called the NJ LTCO intake line to report that they were not given proper personal protection equipment (PPE) in order to care for residents safely.
  • Dozens of family members called us to state that their loved ones died of COVID-19, alone and without family by their side. Most of these callers alleged care neglect due to poor staffing.

As this crisis unfolds into late spring and early summer, it appears that there is more PPE and more testing available. These are the two things that are absolutely critical to stemming the tide of this horrific virus and getting to a place where our office, state regulators, and families and friends can once again visit long-term care residents.

Stepping up outreach

In the meantime, here at the NJ LTCO, we continue to adapt to this new reality. While we look forward to the day when we can go back into long-term care facilities, we are stepping up our outreach to residents via newsletters, direct phone calls and utilization of tablets and smart phones.

In mid-May, we began to distribute a resident-focused monthly newsletter to residents of long-term care facilities. In the inaugural edition, we remind residents that they have rights and that they can always call us for assistance. In addition, we remind them that most of them will get a $1,200 stimulus payment as a result of the COVID-19-related CARES Act and that this money is theirs-and no one can take it from them.

Conditions at long-term care facilities; hope for the ensuing months

I wish I could say that the tragedy of COVID-19 in our long-term care facilities was totally unforeseeable, but that would not be the whole truth. While the scope and speed at which the COVID-19 tragedy unfolded were certainly new, the conditions in many of our long-term care facilities were ripe to fuel this type of situation.

In the ensuing months, it is my hope that we will see the effects of this terrible virus wane in long-term care facilities. In its wake, I am sure that there will be a clear-eyed assessment of how we, as a society, could have done more to protect vulnerable elderly and disabled people living in residential settings. We have learned much about this virus and the terrible toll it can take in long-term care facilities. My expectation is that we all will apply the lessons we have learned so that we are better prepared for any future outbreaks.

The thousands of souls we have lost and the thousands of vulnerable elderly and disabled people currently living in long-term care facilities deserve at least that much.

For more information on the LTCO, visit nj.gov/ooie/. The LTCO can be reached by calling 1-877-582-6995 or by email at [email protected]co.nj.gov.

Any opinions expressed within guest blogs are those of the author and are not necessarily held by NJ Foundation for Aging.