Writing dementia down
REGION — AlzAuthors co-founder Marianne Sciucco said that her connection to Alzheimer’s disease began in the late 1980s, when her aunt was diagnosed with …
REGION — AlzAuthors co-founder Marianne Sciucco said that her connection to Alzheimer’s disease began in the late 1980s, when her aunt was diagnosed with Alzheimer’s.
“We were very close; she was my mother’s older sister by 15 years,” Sciucco said. “We spent holidays and weekends with her. She was a caring, loving person, and an active part of our lives growing up. I was in my 20s when she was diagnosed, and she went into long-term care.”
She said the disease was particularly hard to deal with as her aunt progressed to the late stages and no longer recognized her loved ones.
“She didn’t know anyone anymore. She went all the way to the late stages of it. She didn’t get any relief from any co-morbidity, and then the family got dragged through it as well,” she said.
Later, Sciucco encountered people living with dementia while working as a nurse in long-term care as a case manager—and eventually, a particular couple inspired her to write.
“I went to nursing school and worked in long-term care as an aide, and discovered dementia care in the facility. I actually enjoyed that. So, when I became a nurse, I worked in the hospital as a case manager—you always have dementia patients when you’re in a hospital.
“One day, this couple inspired me to write my first novel. I was just captivated by the wife in particular. She needed to go for further nursing care in a facility, and her son asked me to make sure they didn’t leave the hospital without him. I started thinking, ‘What would happen if they did, and the son wasn’t there, and the husband took the wife, and they disappeared.’ It is a novel, a love story. It’s a little book, but it went a long way. I ended up founding this organization.”
AlzAuthors was created in 2015 by Sciucco, with fellow authors Jean Lee and Vicki Tapia.
“We had been in correspondence with each other. I just thought, ‘I wonder if I can get together with other authors of Alz books.’”
They started with an awareness campaign, and then a blog followed.
Now they have more than 300 hundred authors, a podcast and a bookstore that links to Amazon, which makes it easier for people to find books focused on their particular needs.
“The Custom Caregiver Collection is the latest project. We launched it a few months back. We have 18 [collections] out there in the world, and there are two more in the works.”
The collections are customized to the needs of the groups.
“A lot of the books were about caring for your spouse. [But] they wanted memoirs, rather than how-tos, and a few kids’ and teen books are in there. We have poetry books, art books, journaling books. Several fictional books as well.”
A recent panel discussed the value of storytelling in caregiving, Sciucco said. “In many ways, there is silence and stigma associated with a dementia diagnosis. Families may not even talk to each other about the realities of the experience. We find that when people are able to share their experiences—whether it’s in a support group or the community, with your coworkers, your neighbors or the people in your church—it makes it easier to deal with. Writing about it is very therapeutic, even if people don’t want to share it. A lot of the books were written from those writings, from people’s diaries and journals.”
She added that when people with the disease write about their experiences, it can offer a valuable perspective. Several of the books are either by the person with the disease, or written for that person by a professional author. “They are amazing books that tell us so much that otherwise is lost.”
To learn more about AlzAuthors, visit AlzAuthors.com. There you can access links to the group’s Amazon store, its collections and more.
PIKE COUNTY, PA — The Pike County MEDI (Medicare Education & Decision Insight) team can assist county residents in navigating Medicare’s annual open enrollment period. Counseling is available in person and by phone.
Medicare’s open enrollment period runs until Wednesday, December 7.
To learn more or schedule an appointment, call the Pike County Area Agency on Aging at 570/775-5550 ext. 1313, or 570/624-3027.
Information from the monthly newsletter of the Pike County Area Agency on Aging.
SULLIVAN COUNTY, NY — Animatronic “pets” are available for free from the Sullivan County Office for the Aging.
The cuddly dogs and cats “offer joy, comfort and companionship” to Sullivan County adults aged 60 and up “who are feeling isolated, lonely, depressed or confused.”
The pets are in limited supply, and are limited to one per household. If you know somene who would benefit from an animatronic pet, call the Office for the Aging at 845/807-0241.
Information from the Monthly Hoot, the newsletter of the Sullivan County Office for the Aging.
NATIONWIDE — The Medicare Improvement for Patients and Providers Act (MIPPA) is a way for Medicare beneficiaries to learn how to save money on their Medicare costs.
Participants must have limited income and assets.
The program is especially useful for low-income people with limited resources, residents of rural areas, members of American Indian, Alaskan Native and Native Hawaiian communities, people under age 65 with disabilities and speakers of English as a second language
Grants are available to educate Medicare beneficiaries in need about existing programs that can help them save money on their health care costs.
These programs include:
Medicare Part D Low-Income Subsidy (LIS): Administered by the Social Security Administration, this program helps to lower Medicare Part D costs, including out-of-pocket costs for premiums, deductibles and prescription drugs.
Medicare Savings Programs (MSPs): Administered by state Medicaid agencies, MSPs can help pay some Medicare costs for health care, including Medicare Part B premiums, for eligible beneficiaries.
Medicare Preventive Services: MIPPA grantees also educate the community about these services, which cover preventive health services such as the Welcome to Medicare preventive visit, yearly wellness visits, vaccinations (e.g. flu and COVID-19), screenings for cancer and heart disease, and more. These services are available to all Medicare beneficiaries, regardless of income or assets.
To find out if you or your loved ones qualify for one of these money-saving programs, contact the Sullivan County Office for the Aging at 845/807-0241.
Information from the Monthly Hoot, the newsletter of the Sullivan County Office for the Aging.
NEW YORK STATE — Adults aged 50 and up can join thousands of their New York peers in the GetSetUp program for health and wellness, skills training and more.
It’s all about free online classes for older adults in the state, and is brought to you by the New York State Office for the Aging (NYSOFA) and the Association on Aging in New York (AgingNY).
NYSOFA and AgingNY began GetSetUp during the pandemic. The program is meant to combat social isolation, and bridge the digital divide for older New Yorkers, according to a press release.
Physical exercise, balance and agility classes rank among the most popular offerings for New York users. The classes include morning fitness, tai chi-shibashi and yoga. The platform also offers skills-training classes with an emphasis on reskilling and upskilling, so older New Yorkers can access new economic opportunities.
A range of classes are taught in Spanish.
“The numbers speak for themselves,” said NYSOFA director Greg Olsen. “Nearly 200,000 users have been empowered by this user-friendly platform to learn new technologies, improve their health, engage their intellect… and share their unique talents, skills and expertise.”
The classes are taught by older adults, who have backgrounds in education or who have other professional expertise.
“We look forward to reaching even more New Yorkers, to [ensure] that they, too, have the opportunity to stay active, engaged and reimagine themselves at any age in a safe, fun and interactive way,” said GetSetUp co-founder Lawrence Kosick.
The program was designed by and for people who are aged 50 and older. Users can browse and enroll in courses at www.getsetup.io/partner/NYSTATE, or refer a friend at dost.gsudevelopment.com.
Learn more about GetSetUp en Español at www.getsetup.io/series/gsu-en-espanol.
WILKES-BARRE, PA — Addressing the rising number of multigenerational households across the state, Rep. Eddie Day Pashinski (D-121) recently hosted a House Democratic Policy Committee hearing on the increasing number of grandparents raising grandchildren, and the legislation and resources needed to support caregivers and children across Pennsylvania.
“I first became aware of this issue more than a decade ago, when I was fortunate enough to meet several heroes in our communities—grandparents who stepped in to raise their grandchildren for various reasons,” said Pashinski. “We passed three bills in 2018 to create important resources for grandparents, bills that I’m very proud will help thousands of people in need.”
His new legislation, House Bill 2858, would provide for legal services—including adoption—for kinship-care families.
Kinship care is the care of children by relatives who are not their parents, or by close family friends.
Held at the Henry Student Center at Wilkes University, the hearing consisted of grandparents who are raising their grandchildren, nonprofit founders and state officials. The hearing noted that the opioid epidemic has contributed to the number of kinship-care families; it also recognized that a multitude of reasons can lead to a family member stepping in to raise children.
“The stark reality is—and it happens for many reasons—grandparents raising grandchildren is a very real thing, and I know this has been going on for a very long time,” state Rep. Gina Curry (D-164) said. “I’m thinking about the stigma in talking about the need to take care of family and grandchildren, and I’m concerned about people in my district who are in an isolated place because they may encounter language or cultural obstacles.”
Karen Barnes, president and founder of the nonprofit Grands Stepping Up in Delaware County, noted that she has tried to work with numerous lawmakers and school districts to reach families that otherwise wouldn’t be contacted because of language or cultural obstacles.
“Caregivers, including grandparents who are raising grandchildren, often face a myriad of challenges, such as access to information about available benefits and resources, lack of adequate education and training, and financial assistance to help defray the costs of caregiving-related expenses,” said Steven Horner, deputy secretary of the PA Department of Aging. “The department’s caregiver support program, administered statewide through the 52 Area Agencies on Aging, provides resources and assistance that focus on the caregiver’s well-being and alleviate the stresses associated with caregiving.”
Kinship caregivers sometimes don’t have legal custody of their grandchildren, and they can struggle to find money to pay for essentials and child care. Often, according to a press release, they go without what they need.
Testifiers noted that one of the biggest fears facing grandparents—specifically those stepping in to help parents who are suffering from substance use disorder—is that Children & Youth Services, or the police, would intercede and take their grandchildren away.
Natalie Hoprich, a grandmother raising her grandchildren, said grandparents need to realize authorities are not attempting to break up households. In recent years, Hoprich said, she has noticed it has become more acceptable for grandparents to come forward, and hopes that more will do so in the future.
“We have to start treating these heroic people not as grandparents, but as the parents and caregivers they really are,” said state Rep. Maureen Madden (D-115). “Having been raised by a single dad and a grandmother, I know firsthand the challenges a family unit faces, and I am so grateful for the testifiers today for their tireless advocacy, their passion and, most importantly, their unquestionable love for their grandchildren. I’ve been proud to work closely with Rep. Pashinski over the years on improving services and resources for families in these situations, and I know our work is not yet done. This was an enlightening and sometimes heartbreaking hearing, and it’s critical that we continue to spread the word of available resources and erase the stigma some grandparents unnecessarily feel.”
For more information about this hearing and other hearings, visit pahouse.com/policy.
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