Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

How the elderly are treated should scare you

Excerpt from the Calgary Herald: (click for entire article)

I am 72 years young and I have worked in the health-care system for 47 years as a professional physiotherapist, and over six years as a private care-giver.

I have worked in hospitals, nursing homes and private physiotherapy clinics. I have seen the rise and fall of our health-care system, but never have I been as scared as I have been the past six years. I witnessed the decrease in the care and respect for those living in health-care facilities. They have become a place to warehouse the elderly, the mentally ill and disabled till they die.

In the 1980s, we lobbied for the elderly so all health-care facilities had full services and access to geriatricians, specialists, all rehabilitation services, as well as social and recreational activities. Those were the good years, when the elderly weren't afraid to go to lodges, nursing homes and auxiliary hospitals when needed.

Boomers begin to wonder: Who will take care of me?

Excerpt from Minn Post: (click for entire article)

Vera Quarberg and Evelyn Martin met in their new home, across town from the townhouse communities they left 10 years ago for another lifestyle. They found it at Presbyterian Homes in Woodbury, where they’ve also found companionship, exercise, entertainment, enlightenment and more. It is the kind of place aging boomers may well find attractive in a few years.

Both widowed and in their mid-80s, the two have become good friends. “We play games together,” Evelyn said. Bunko on Mondays, bingo on Tuesdays and Rummikub on Thursdays with a larger group. Vera faithfully gets to exercise classes three mornings a week in adjoining Central Park, where the regulars know her by name. Down the hall from her convenient apartment, “There’s always a group sitting around talking in the community room or the gathering room,” she said. She often joins in. Evelyn usually prefers “sitting at home and reading a book,” she said.

Wisconsin Elder Care, Disability Advocates Win Budget Battle

Excerpt from Direct Care Alliance: (click for entire article)

Advocates for the aging and people with disabilities in Wisconsin achieved an important victory on March 19 when the governor signed a law lifting the caps that had been imposed on three key Medicaid programs supplying home and community-based services. We talked to Lisa Pugh, the public policy coordinator at Disability Rights Wisconsin, about how the advocates won and why it matters.

Caring for elderly parents catches many unprepared

Excerpt from USA Today: (click for entire article)

Last July, Julie Baldocchi's mother had a massive stroke and was paralyzed. Baldocchi suddenly had to become a family caregiver, something that she wasn't prepared for.

"I was flying by the seat of my pants," says Baldocchi, an employment specialist in San Francisco. Both of her parents are 83, and she knew her father couldn't handle her mother's care.

The hospital recommended putting her mother in a nursing home. Baldocchi wasn't willing to do that. But moving her back into her parents' home created other problems.

Going the Distance

Excerpt from Aging in Action: (click for entire article)

Caregiving is a long and arduous journey that can be uplifting and exhausting; it is fulfilling, but also frustrating.  For twenty years and in many different circumstances I have been both rewarded and drained by caring for many of my loved ones.

I’ve learned that caregiving isn’t a sprint.  It’s more like a marathon that can’t be run without great determination, strength and stamina. Successful athletes have coaches and fans whose encouragement and good advice help them succeed.  Throughout my caregiving years, my husband, sister and friends were the coaches and cheerleaders who helped me keep going.  But I also had to encourage myself and learn to manage my own energy.

How long have you been caring for others?  If you’re trying to go the distance, connect with family, friends or professionals who are supportive and can lend a hand.  While their backing is crucial, it backs up, but never replaces, your own self-care.  There is no substitute for acting on your own behalf.

The Elder Care Blues: Where the Birds Scream

Excerpt from The Huffington Post: (click for entire article)

The text message reads, "Mom trying tocall U call her"

This typo-heavy yet abbreviated message is from the elusive "son," he who has not visited his mother in more than three months. He who has not spoken to me in nearly 10 months.

I bristle, and then telephone mom. Between sobs and screams, she gasps for air and says, "Come! Now! I need you."

I ask, "Are you dying?" This may seem callous, or even funny, but it is actually a good question, a fair question that cuts to the chase, and there is a back-story.

Some five years ago, my mother-in-law kindly called me at 6 a.m. and said, "I am dying." It was not the usual thing you hear from mothers. She did not say, "I am going to die soon," or "I feel like I am dying," or "You better come soon, or I will die." My mother-in-law said, "I am dying." And seven minutes into the phone call, she suffered a massive heart attack and she did die, then and there.

Eric Carlson: On Elder Care—and Elder Law

Excerpt from U.S. News: (click for entire article)

All too commonly, the choice of a nursing home is made under duress—when a prospective resident and his or her family are already in difficult times. U.S. News asked Eric Carlson, a Los Angeles attorney with the National Senior Citizens Law Center, a nonprofit law firm that defends the interests of seniors, what to look for in a care provider and how to fight back if there's a problem. Carlson is the author of 20 Common Nursing Home Problems—and How to Resolve Them and coauthor of The Baby Boomer's Guide to Nursing Home Care (Taylor Trade, $14.95) Edited excerpts from the interview:

What can consumers do to best protect themselves up front?
Be aggressive about questioning a prospective home about staffing and staff training. A nursing home generally receives $4,000 to $9,000 a month for the care of one resident, so it should be responsive to both residents and potential customers. Talk to residents and visitors without nursing home staff hovering nearby. Visit several times, at different hours and on different days. Make at least one visit at mealtime. Examine inspection reports. Each nursing home that accepts Medicare or Medicaid payment is inspected approximately once a year. And the National Citizens' Coalition for Nursing Home Reform offers a consumer guide to getting good care in a nursing home.

Crisis of Caregivers for People with Disabilities & Seniors Focus of March 13th 1:30 p.m. Assembly Aging & Long Term Care and Assembly Human Services Committee Info Hearing

From CDCAN:

SACRAMENTO, CA (CDCAN)  [Last updated 03/12/2012 02:25 PM]  -  The crisis of caregiving – both paid and unpaid – impacting people with disabilities and seniors and their families is the focus of a joint informational hearing by the Assembly Aging and Long Term Committee, chaired by Assemblymember Mariko Yamada (Democrat – Davis, 8^th Assembly District) and the Assembly Human Services Committee, chaired by Assemblymember Jim Beall, Jr. (Democrat – San Jose, 24^th Assembly District), March 13^th, Tuesday afternoon at 1:30 PM, at the State Capitol in Room 126.  The hearing is scheduled to video streamed live on the CalChannel website at www.calchannel.com.  The hearing should also be carried live on CalChannel’s cable channel – check your local cable listings or go to the CalChannel website page at:  http://www.calchannel.com/channel/carriage/  to find your city and the cable channel.

The informational hearing by the two policy committees that – along with Assembly Health Committee and the Assembly Budget Subcommittee #1 on Health and Human Services – deal with long term services and supports – including those for children and adults with disabilities (including developmental, autism spectrum and other disorders), mental health needs, the blind, seniors and their families, providers including In-Home Supportive Services, supported living services, independent living services, and home health agencies and others.

The hearing comes just a week after the tragedy in Sunnyvale, California where a mother shot and killed her 22 year old son who had autism spectrum disorders, and then killed herself, after telling friends and others of her growing despair and anguish and enormous stress of being a caregiver and what she believed were the limited choices to provide for services or supports for her son and her family. A representative of a provider agency that tried to help the family – and knew the family as friends -  intends to come to the hearing and if time is permits, will give public comment on what the State can do to help families who provide caregiving and face what many advocates in crisis say is overwhelming and unrelenting stress that is shattering families across the State.

“Caregivers—both paid and unpaid—are the unsung heroes of our long-term care system,” said Assemblymember Yamada.  “We often forget that deep cuts to social welfare programs not only affect the millions who receive care, but place an undue burden on those who give care.  Caregivers are increasingly stressed and financially unstable, often quitting their jobs to care for a loved one full-time.  This hearing will provide an opportunity to hear from the real experts—caregivers themselves.”

Perhaps thinking of the Sunnyvale tragedy that is just a few miles from his district in San Jose, Assemblymember Beall said that “…the act of placing one’s own interests aside in order to care and support another is one of the most selfless acts any of us can undertake. As we work through the fiscal challenges of the state, this hearing will focus our attention on one of our state’s most valuable natural resources – the caregiver.  We as policy makers cannot forget that the sacrifices they make are invaluable and irreplaceable.”

California’s Budget Woes Had – And Will Have Major Impact on Hundreds of Thousands of Caregivers

• Governor Brown last year proposed – and the Legislature approved hundreds of millions of State general fund cuts to services and supports for people with disabilities, mental health needs, the blind and seniors – including those that help and support caregivers. 
• With budget reductions stretching back over 10 years now, some of the reductions strike at what advocates say are vital services helping caregivers, including cuts to respite, community-based services, cuts to Medi-Cal benefits such as Adult Day Health Care and other services.
• More reductions have been proposed for the upcoming 2012-2013 State Budget year, including major proposed cuts to In-Home Supportive Services, $200 million in State general cuts to developmental services (though the total amount and the details of what will be cut or saved is still being vetted within the Brown Administration after a month long series of six stakeholder meetings). 
• The Governor is also proposing major changes to integrate long term care services and supports, including to In-Home Supportive Services and the Multipurpose Senior Services Program (MSSP) as Medi-Cal managed care-type benefits in certain counties.  That proposal still needs approval from the Legislature. 

Hearing Will Feature Husband of Women With Lou Gehrig’s Disease

The hearing will begin with an overview of California's caregiver system, followed by panels of caregivers and providers who will discuss the challenges and opportunities in caring for California’s growing senior population, followed by public comment.

The hearing will feature Luther Findley, whose heroic story has been profiled in a series published in the Sacramento Bee.  Mr. Findley cared for his wife, Claire, through her ordeal with Lou Gehrig's disease, or ALS. 

Findley lost his job and his home while providing 24-hour care and support to his wife until her death on January 17.  Yamada noted that Findley’s story illustrates the enormous costs caregivers endure maintaining their commitment to assist loved ones dependent upon others.

There will also be an update from Paul Heyn, whose adult twins were formerly served in the community at an adult day health care center.  Upon the center’s closure, Heyn’s two children were placed in a higher-cost institutional placement.

One In Four California Families Involved In Caring For A Loved One With A Disability

• An estimated one in four California families is currently involved in caring for a loved one with a disability. 
• Both policymakers and advocates agree that caring for a family member who has dementia or multiple chronic health conditions is complex and takes a heavy toll on the caregivers. 
• According to “Independence At Risk: Older Californians with Disabilities Struggle To Remain At Home As Public Supports Shrink”, a recent brief by the UCLA Center for Health Policy Research, more than 1 million caregivers report moderate or serious distress levels.  About 67% of caregivers work full- or part-time jobs and California caregivers who live with their patients spend an average of 36 hours per week providing care. The economic value of the unpaid care provided totals in the billions according to the study. 
• The 8 page policy brief “Independence at Risk: Older Californians with Disabilities Struggle to Remain at Home as Public Supports Shrink” is attached to this CDCAN Report as a document pdf file titled “201112 – UCLA Center for Health Policy Research Brief – Independence At Risk.pdf”  The report can also be downloaded from the UCLA Center for Health Policy Research website at: http://www.healthpolicy.ucla.edu/pubs/files/homepolicybrief2011.pdf
• The policy brief presents findings from a yearlong study that closely followed a small but typical set of older Californians with disabilities who depend on fragile arrangements of paid public programs and unpaid help to live safely and independently at home.
• Many of these older adults have physical and mental health needs that can rise or fall with little warning; most are struggling with increasing disability as they age.
• In spite of these challenges, most display resilience and fortitude, and all share a common determination to maintain their independence at almost any cost, according to the brief.
• This policy brief reports on in-depth interviews conducted over a period of one year concerning 33 older adults who receive non-institutional long-term care services and supports (LTSS) and  documents the challenges experienced by this typical group of California seniors, who have been struggling with cuts to the state services they receive.
• Long term care supports and services includes support services that address a range of care needs, including personal care, such as bathing; domestic tasks, such as meal preparation; and other assistance, such as transportation to medical appointments. These formal services often supplement and help sustain the informal care provided by family members, friends, and neighbors – the unpaid sources of support upon which many community-dwelling older adults rely.
• Major Long Term Supports and Services programs include In-Home Supportive Services (IHSS), which pays for personal care assistance; Adult Day Health Care (ADHC), which provides therapeutic services for seniors and persons with disabilities (being eliminated in April and replaced by a new “Community-Based Adult Services” program), Supported Living Services and Independent Living Services funded through the 21 non-profit regional centers for eligible persons with developmental disabilities, and respite for their families; the Multipurpose Senior Services Program (MSSP), which provides enhanced case management and supplemental services; and nutrition programs, such as home-delivered meals.
• Declines in health status and other personal circumstances among aging Californians have been made worse by recent and ongoing cuts in funding for vital services and supports by the State, according to the policy brief, and will be made worse if many of the proposals calling for additional major reductions are enacted in the 2012-2013 State Budget year. 
• Policy recommendations in the 7 page brief include consolidating long term services and supports and enhancing support for caregivers.

INFORMATIONAL HEARING AGENDA

The two page agenda is attached to this CDCAN Report as a document pdf file titled “20120312 – Assembly Aging and Long Term Care – Assembly Human Services Committee March 13 Info Hearing Agenda.pdf”   The entire agenda is also printed below:

Who Cares? Planning, Protecting and Paying for the Future of Caregiving in California

A Joint Hearing of the Assembly Committees on Aging and Long-Term Care and Human Services
Assemblymembers Yamada and Beall, Jr. Co-Chairs
Tuesday, March 13, 2012
1:30 p.m. State Capitol, Room 126

I Overview of California's Caregivers and Systems that Support Them

• Kathy Kelly – Executive Director, Family Caregiver Alliance Caregiving in California.
• Lisa R. Shugarman, Ph.D., Director of Policy for The SCAN Foundation. State Report Card on Long-Term Supports and Services for Older Adults, People with Physical Disabilities and Family Caregivers.
  

II Provider Issues: Issues facing providers of long-term supports and services.

• Ken Erman, RN, CEO, Rx Staffing and Home Care - Issues impacting the homecare industry.
• MSSP [Multipurpose Senior Services Program]: Richard Strange, MSSP Supervisor/Site Director, Solano-Napa Agency On Aging of Solano-Napa Agency On Aging - Coordinating complex care arrangements with informal and other caregivers.
• Susanne Rossi, Site Director, Mountain Caregiver Resource Center, CSU Chico - Understanding the caregiver resource center system.
• Ross Burns, LCSW, Mental Health Specialist/Lead Caregiver Support Coordinator, Veterans Administration, Region XXI - Brief overview of the VA [Veterans Affairs] caregiver support system

III Capacity: Developing the infrastructure to support California's needs.

• Joseph Cobery, Director, Passages (Area 3 Agency on Aging) - Rural Californians and caregiving
• Micheal Pope – Executive Director, East Bay Alzheimer's Services - Home, and community-based solutions for working families.
• Donna L. Yee, Ph.D., Chief Executive Officer, Asian Community Center - Increasing the capacity in the community to support family caregivers.
• Paul Heyn—Family Caregiver, former consumer of ADHC [Adult Day Health Care] services
  

IV Balance: Caregiving roles, and its impact on lives.

• Luther Findley, Caregiver
• Jenya Cassidy, California Policy Director, Labor Project for Working Families - Trends in supportive work environments for working caregivers.
• Sharon Brown, Caregiver/Volunteer, Alzheimer’s Association - Dementia care perspective.
• Paula Driver Shimada, PHR, Human Resources Analyst, UC Davis - The effects of caregiving on a workforce.

V Public Testimony

HELP - VERY URGENT!

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Phone: 916-212-0237

 

The Parent Trap: Adult Children Care For Elderly Parents

Excerpt from Kaiser Health News: (click for entire article)

Chris St. Clair’s mother was firmly rooted in Breckenridge, Texas, population 6,000, with its three traffic lights and two grocery stores. She had graduated from the local high school and knew how many times the banks had changed names. She didn’t intend on leaving.

But in 2009, the 82-year-old woman’s weight dropped to 83 pounds. When a home nurse called to tell St. Clair, the Kensington resident jumped on a plane to Texas.

There, she found her mother’s refrigerator and pantry near empty. She learned that her mother had canceled Meals On Wheels, which had been delivering lunches and dinners, and that she had been driving around town against her doctor’s orders while recovering from cataract surgery.

Today's seniors deserve better

Excerpt from Medicine Hat News: (click for entire article)

A nation's greatness is measured by how it treats its weakest members, said Mahatma Ghandi. It's a statement well worth remembering following recent startling revelations about how society is treating seniors, some of the most vulnerable in society.

The latest Alberta Health Quality Council's report says there have been deaths in the busy corridors of emergency departments. The last minutes of lives, for people who deserved to die with dignity in a palliative care setting, were spent alone among those who failed to notice their need of appropriate care.
A seniors residence in Humboldt, Sask., has just given 10 seniors a week to get out to make way for others more in need of those spaces. A family of an 86-year-old, confined to a wheelchair, talked of the stress and sleepless nights she's had worrying about where she will seek shelter next week. The same facility had a carbon monoxide leak in December 2010 that contributed to the death of three residents.
In England, unannounced spot checks will be taking place at seniors' residences because of the grim situations many seniors face.