Facts About Family Caregivers

From the ALS website:
The ALS Association is proud of its tradition of leadership in providing comprehensive programs and services for ALS caregivers. Along with those programs and with the assistance of the National Family Caregivers Association, our continuing partner in recognition of November as National Family Caregiver's Month, we are pleased to present to you the following Family Caregiving Statistics.

Family Caregiving StatisticsCompiled by the National Family Caregivers Association

More than one quarter (26.6%) of the adult population has provided care for a chronically ill, disabled or aged family member or friend during the past year. Based on current census data, that translates into more than 50 million people. Source: National Family Caregivers Association (NFCA) Random Sample Survey of 1000 Adults, Funded by CareThere.com, Summer, 2000.

Caregiving is no longer predominantly a women's issue. Men now make up 44% of the caregiving population. Source: National Family Caregivers Association (NFCA) Random Sample Survey of 1000 Adults, Funded by CareThere.com, Summer, 2000.

The value of the services family caregivers provide for "free" is estimated to be $306 billion a year. Source: Peter S. Arno, "Economic Value of Informal Caregiving," presented at the American Association of Geriatric Psychiatry, January 2006.

People over 85 years of age are the fastest growing segment of the population. Half of them need some help with personal care. Source: US Bureau of the Census Statistical Brief, Sixty Five Plus in the United States, May 1995.

Elderly caregivers with a history of chronic illness themselves who are experiencing caregiving related stress have a 63% higher mortality rate than their non-caregiving peers. Source: Journal of the American Medical Association, December 15, 1999, Vol. 282, No. 23.

The pool of family caregivers is dwindling. People over 65 are expected to increase at a 2.3% rate, but the number of family members available to care for them will only increase at a 0.8% rate. Source: Mack, Katherine and Thompson, Lee with Robert Friedland. Data Profiles, Family Caregivers of Older Persons: Adult Children. The Center on an Aging Society, Georgetown University, page 2, May 2001.

Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high. Source: Cannuscio, C.C., C. Jones, I. Kawachi, G.A. Colditz, L. Berkman and E. Rimm, Reverberation of family illness: A longitudinal assessment of informal caregiver and mental health status in the nurses' health study. American Journal of Public Health 92:305-1311, 2002.

Family caregivers who provide significant time and effort in caring for a loved one, especially spousal caregivers, do not get consistent help from other family members. One study has shown that as many as three fourths of these caregivers are "going it alone." Source: Caregiving Across the Life Cycle - as above.

Approximately 80% of home care services are provided by family caregivers. Source: US General Accounting Office (GAO/HEHS 95-26, "Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages") 1994.

A recent study calculated that American businesses lose can lose as much at $34 billion each year due to employees' need to care for loved ones 50 years of age and older. Source: National Alliance for Caregiving/Met Life (Met Life Study of Employer Costs for Working Caregivers).
Fifty nine percent of the adult population either is or expects to be a family caregiver. Source: Metlife Mature Market Institute and National Alliance for Caregiving, MetLife Caregiving Cost Study: Productivity Losses to U.S. Business, July 2006.

The National Family Caregiver's Association has also compiled state-by-state statistics on the economic impact of family caregiving. For more information, please visit http://www.nfcacares.org/.

The National Alliance for Caregiving and AARP have released "Caregiving in the US," an update to the 1997 National Caregiver Survey. The research report and supporting documents are available on the Alliance web site at http://www.caregiving.org/.

The Lou Gehrig Connection

From the MDA's ALS Division:

Some 80 years ago, a muscular kid from a working class neighborhood in New York dove into the choppy waters of the Hudson River and swam all the way across to New Jersey. As a reward, the foolhardy youngster got his ears boxed by his father. The kid was Lou Gehrig.

Today, just a few streets away at Columbia Presbyterian Medical Center, Gehrig's name and that of his wife are enshrined at The Eleanor and Lou Gehrig MDA/ALS Center, one of 36 MDA centers dedicated to ALS research and care.

Everyone knows that Lou, the great "Iron Horse" of baseball, had ALS. But why was his wife's name placed in honor above his? The answer is part of MDA history.

After Gehrig learned he had ALS and retired from the New York Yankees in 1939, ending his record streak of 2,130 consecutive games played, Eleanor was his chauffeur, nurse, nutritionist and constant companion. She exercised with him, steadied his fingers when he signed his name, and helped him take his daily injections of vitamin E.

So high was the Gehrigs' faith in vitamin E that Eleanor used to prepare a special salad for Lou made with common garden grass that she cut from the park because she was told it was rich with the vitamin. Even with salad dressing, the concoction made Gehrig gag. It didn't stop the progression, and in 1941, Lou Gehrig lost his life to ALS.

"After what happened to Lou, I was heartsick and wanted somehow to strike back," Eleanor said years later. "I felt that Lou would have wanted me to help others. But I realized that medical science hadn't really made a start in studying disorders of the neuromuscular system. Medical men generally deemed such diseases incurable."

In the early 1950s, Eleanor heard that a new organization called the Muscular Dystrophy Association was being formed to combat neuromuscular diseases. "I saw that here was the answer to my personal need -- people whose thirst for action was as deep as my own. I immediately offered my services."

With Eleanor's help, MDA was to become and remain the world's leading private research organization and service provider for those with ALS.

Eleanor served as MDA's national campaign chairman during crucial formative years in the 50s and 60s. The late Robert Ross, former MDA president and CEO, accompanied her as she traveled the country giving speeches and interviews, and telling people like first lady Mamie Eisenhower about the agency's mission.

Eleanor assisted in chapter development, recruited volunteers including many celebrities, and persuaded radio and television program sponsors to give free publicity to MDA's annual fund-raising campaign. She was an MDA corporate member from 1955 through 1964.
In her later years, Eleanor had many friends, including the late wife of MDA Chairman of the Board Dr. R. Rodney Howell, Sarah E. Howell. Sarah, a doctor herself, had an abiding connection to the Gehrigs. Her father, Dr. Caldwell Esselstyn, had been Lou's personal physician during his years fighting ALS.

Sarah, only weeks before her death in 1993, placed the inscription shown below in a copy she gave to MDA's Ross of a Lou Gehrig biography co-authored by Mrs. Gehrig. The insertion describes Sarah's vivid childhood memory of seeing the Iron Horse in the flesh:

For more information: http://www.als-mda.org/gehrig.html

Project ALS

The mission of Project A.L.S. is to recruit the world’s best research scientists and clinicians to work together toward an understanding of and the first effective treatments for ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. Project A.L.S. was founded in 1998, as a non-profit 501C3, by Jenifer Estess, her family, and friends, when Jenifer was diagnosed with the fatal brain disease at the age of thirty-five. To date, Project A.L.S. has raised over $42 million, directing 81% to research programs.

Jenifer Estess, her family, and friends, started Project A.L.S. in 1998, when Jenifer was diagnosed with the fatal brain disease at the age of thirty-five. Upon discovering that there were no effective treatments, Project A.L.S. set out to put medicine into place. The mission today is to bring the best science to ALS patients in the form of effective treatments and, ultimately, a cure. Project A.L.S. has raised over $37 million, directing 81% to research programs. The majority of fundraising proceeds goes to support investigations in Genetics, Drug Discovery, Stem Cells, and Disease Pathways. The hallmark of Project A.L.S. research is collaboration. Researchers who were competitors now play on the same team, meet regularly, share data openly, and work rationally, constructively, and aggressively toward shared goals.


For more information about Project ALS, visit their website: http://www.projectals.org/

Links to ALS Answers and Contacts

From the ALS Association of Greater New York Chapter

Just what is ALS? Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease, first described in 1869 by the noted French neurologist Jean-Martin Charcot. Although the cause of ALS is not completely understood, the last decade has brought a wealth of new scientific understanding about the disease that provides hope for the future.

Lou Gehrig first brought national and international attention to the disease in 1939 when he abruptly retired from baseball after being diagnosed with ALS. Most commonly, the disease strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time. ALS has cut short the lives of other such notable New Yorkers as Senator Jacob Javits, Hall of Fame pitcher Jim "Catfish" Hunter, Actor Michael Zaslow, the creator of Sesame Street Jon Stone, Jazz Legend Charles Mingus and photographer Eddie Adams.

ALS is a neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech, swallowing or walking difficulty.

The biological mechanisms that cause ALS are only partially understood. The only known cause of ALS is a mutation of a specific gene: the SOD1 gene. This mutation is believed to make a defective protein that is toxic to motor nerve cells. The SOD1 mutation, however, accounts for only 1 or 2 percent of ALS cases, or 20 percent of the familial (inherited) cases.

Familial ALS represents between five to 10 percent of all cases. The rest arise spontaneously and mysteriously, making seemingly random attacks on previously healthy adults. ALS can strike anyone, anytime.

Physicians have limited choices for treating ALS, and the options that do exist have come into use within the last 10 years. Studies suggest that patients' length of survival and quality of life are enhanced by night-time breathing assistance early in the course of the disease and by aggressive application of alternate feeding options to assure good nutrition once swallowing becomes difficult. At this time, Riluzole® is the only drug that has been approved by the FDA for treatment of ALS. In clinical trials, Riluzole® has shown a slight benefit in modestly increasing survival time.

Stem cell and gene therapy are promising areas of research. In a variety of studies, ALS mouse models are being used to develop treatments that may someday lead to similar human clinical trials. Gene therapy is one field of research where The ALS Association is concentrating support for more study.

More significant advances of research into ALS has occurred in the last decade than all of the time since Charcot identified the disease. Advances in technology and the genetic revolution are aiding researchers in unlocking the ALS mystery. As more scientists focus on this perplexing disease, the outlook for new understanding brightens each day.

For more informaton about ALS, go to their website at: http://www.als-ny.org/

The Circle of Obstacles: When Your Spouse is Diagnosed with a Terminal Illness

(c) By Roque Pizarro

We live in an era that has produced medical advancements in cardiac surgery, orthopedic surgery and transplants of various organs. Medical advancement that have saved and prolonged lives has been unable to find either treatment or cure for terminal diseases. It is difficult to accept the fact that you can go to the doctor in this modern era with your wife and be told that she has a debilitating, incurable, untreatable terminal disease.

After nearly two years and five (5) Neurologists that relied on painful tests such as four (4) spinal taps, and five (5) EMG’s. An EMG is a neurological test where needles are inserted into the patient's various limbs to test for nerve damage. Other test used was MRI’s, and muscle biopsy’s -- all to determine my wife’s illness.

Some of the diagnoses my wife was thought to possibly have, were Multiple Sclerosis, Multi Focal Motor Neuropathy, and MitroCandrial Disease. None of these named diseases are illnesses you want your wife or family member to have or experience. They are diseases that are in the motor neuron group and are incurable and difficult to treat. My wife ended up being diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as the Lou Gherig Disease. ALS is a debilitating incurable disease that affects all the voluntary muscles in the body such as the arms, legs, diaphragm and neck.

The effects of ALS disables the body from functioning, causing the patient with the inability to ambulate and they become wheel chair or bed bound. Some patients end up being fed by feeding place in the stomach, and they need assistance with breathing by machines such as a bi-pap, coughing machine and a ventilator becomes necessary... Many patients fear having to have a tracheotomy, which is a procedure where a hole is made (cut) in the breathing area of the throat and a tube is inserted to assist with the patient's breathing. When a patient has tracheotomy, it usually leads to the patient's not being able to breath. From my readings and research on the subject, the prognosis is usually 3-5 years.

Once we were given the diagnosis of ALS, our total family lives (my wife and I, her family, and our children) completed changed. We were able to get twelve (12) hours homecare service (seven (7) days per week), and access to transportation needs, as well as the use of equipment, provided through the ALS Association / New York Chapter. We started to attend the ALS support group in order to meet other care givers and patients, and build-up a support system. We wanted to learn more about the disease, its affects, and any resources or information that can be helpful. The ALS Association loaned us a power char, a transport chair and shower commode chair.

During the early months, my wife's mental status changed and she developed depression, anxiety and anger. She was no longer able to walk or stand which took away her sense of independence. She had to be carried up and down our second floor stairs, which has fifteen (15) steps and is very steep. To use the bathroom, she has to be assisted by me or the home attendant - or both. We had to undress and dress her. A few times, we didn’t make it to the bathroom on time, and when that happens, we had to undress and dress her, as well as clean up after her. Incidents like toileting, and going up and down the stairs, impeded our desire to go out.

Please provide me feedback and information on the subject. I look forward to your support of this blog, "The Work of Roque Pizarro."

Please continue to look for my articles on the subject, as well as others.

About Roque Pizarro

Recently served as an Employees Assistance Counselor for 1199NBF/SEIU, one of the biggest international unions covering the health care industry. He is a retired Air Force Guard, and still serving in active duty, including the Air National Guards, a total of twenty-five (25) years. Pizarro also served over twenty (20) years in the social work field. He holds Masters in Human Resources Administration from Central Michigan University, and a Bachelors of Science degree in Labor Studies from New York State Empire State College, a program of the State University of New York. Pizarro has also been active in political and community advocacy work, serving on the boards of several community based organizations and agencies in the city of Buffalo and in New York City.

Professional Experience
1199SEIU BENEFIT & PENSION FUNDS (New York, NY)
2002 – 2009
Counseling Experience:

Conduct level of care assessments and referrals of members and insured dependents of the Home Care and Worker’s Union regarding mental health and substance abuse

Crisis intervention through in-person interviews and/or telephone intake

Short-term counseling services for individuals, couples and families

Responsible for the authorization of length of stay for both inpatient and outpatient substance abuse programs and mental health facilities, based on clinical criteria and benefits guideline

Monitor strong ongoing consultation with acute care facilities regarding progress of client and provide in-network referrals for aftercare plans

Function as a liaison between senior management, department heads, union representatives, health care professionals and treatment facilities

Ensure that clients are educated to the availability of public entitlements and community resources

SPECIAL CARE IMMUNOLOGY SERVICES
LUTHERAN MEDICAL CENTER (Brooklyn, NY)
1991 – 2002
Social Worker Assistant:

Bilingual Psychosocial assessment in the adult and pediatric HIV/AIDS outpatient clinic
Crisis intervention, long-term counseling to individual families, provided referrals for concrete services.
Served a diverse population and chemical dependence was often addressed
Leader of an HIV support group for men.

NEWBURGH ALCOHOL OUTPATIENT CLINIC (New York, NY)
1988 – 1991
Senior Caseworker:

Individual, group and couples therapy to clients with alcohol problems; and with dual Addiction problems
Assessed level of care needed for treatment and post-treatment care
Detailed assessment and treatment alternatives for court-mandated clients

GENERAL EXPERIENCE:
Bilingual (English/Spanish); Computer Literate; community projects with community-based organizations; writer; raised in foster care; listed with Nubian Speakers Bureau; worked with local elected officials; and received several awards and recognition for my community work and contribution.

EDUCATION
Adelphi University: Masters Degree in Social Work (2009)
Empire State College: Bachelor of Science, Labor Studies (1986)
Central Michigan University: MSA in Human Resources Administration (2002)
Certification: Certified HIV – Testing and Post Test Counseling
Certification: CTI – Understanding Domestic Violence: Essential & intersections