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This article by Flora Davis was prepared for the May 19, 2004 edition of U.S. 1 Newspaper. All rights reserved.
New Help For Children of the Elderly
‘You do what you have to do when someone needs you,” says Linda Schwarz, looking back on her years as a caregiver for her elderly parents. “I think my kids would do the same for me because they saw how important family is. When the cards are down, that’s what you have.”
Schwarz’s caregiving years were often overwhelming, especially the day in September, 2001, when she had to coax her mother into a car and take her to a nursing home. Her 90-year-old mother had Alzheimer’s, and her father, who was 86, had been looking after her at home. Schwarz helped as much as she could on evenings and weekends — she works full-time as an auditor at the Princeton Insurance Company on Alexander Road.
Then her father’s health began to fail and a nursing home was the only alternative. “My dad was so sick that it was actually I who drove her there,” Schwarz recalls. Her mother was very upset. She didn’t understand why she had to leave home.
Two days later, Schwarz’s father was hospitalized with severe pain: he had cancer of the small intestine. His subsequent surgery was successful, but when he returned home, he was too weak to leave his apartment. Every day Schwarz went to work as usual. In the evenings, as often as possible, she visited the nursing home because on her good days, when she could recognize people, her mother needed to see family. Schwarz also ran errands for her father and frequently cooked his meals. Several times late at night, he had to be rushed to the emergency room, and she met him there and stayed with him during the crisis. Her mother died in April, 2002. Her father recuperated completely from the surgery but died of a heart attack in September, 2003.
In the United States, family and friends provide 80 percent of the home care needed by people who are chronically ill, disabled, or elderly. According to the U.S. Department of Labor, 30 percent of the workforce has some caregiving responsibility. Many feel stressed out, as Schwarz sometimes did, and have no idea where to turn for help.
To address the problem, the Princeton Senior Resource Center (PSRC) has created a new Caregiver’s Resource Center. It will offer one-stop shopping for people of any age in the greater Princeton area who are caregivers. They can come in or call, and staffers will tell them what kind of assistance is available to them and then help them connect to the services they need, says PSRC’s executive director, Susan Hoskins LCSW.
The formal opening of the new center takes place Friday, May 21, from 2 to 4 p.m. at the Suzanne Patterson Center behind Princeton Borough Hall. The celebration will include a kind of caregivers’ fair that will give attendees a chance to talk to representatives from home health care agencies and from residential facilities for those no longer able to live alone. Experts who specialize in handling paperwork for seniors will also be on hand, along with geriatric care managers — professionals trained in gerontology, social work, nursing, or counseling, who help seniors make long-term care arrangements — and providers of many other services.
PSRC has actually been assisting caregivers for some time, but foundation grants have enabled it to expand its program. Among other things, it will do outreach, which seems important to Hoskins. A number of former caregivers, looking back on their experience, have told her that PSRC’s support would have made an enormous difference to them if only they had known what the organization had to offer. She particularly wants to reach younger individuals in the business community who might not think of consulting the senior center about the care of an ailing spouse or frail relative. The center also expects to field phone calls from people in distant states, concerned about a parent living in Princeton, and it can advise people in this area who are trying to coordinate the care of elderly relatives far away.
The caregiver’s center will offer four basic services:
A lending library: Thanks to grants from the J. Seward Johnson Jr. Trust, the Rummel Foundation, and Provident Bank Foundation, the center now has a collection of books, pamphlets and other information useful to caregivers.
Information and referral: The staff can supply information about everything from where to buy a walker to what to do about an elderly father who lives alone and sometimes forgets to eat. They can help caregivers identify federal and state programs that they’re eligible for and then guide them as they fill out the required applications.
The staffers know where to find home health aides, care managers, a visiting nurse service, an adult day care center, or a facility that provides respite care and will take in the person being cared for so that the caregiver can have a break. The center can also help line up volunteers who are willing to make weekly visits to those who are more or less homebound and handle small tasks for them.
Support groups: Caregivers often feel not only overwhelmed but isolated. For many, it makes an enormous difference to be able to share information and emotional support with others in a similar situation. Hoskins recalls that a couple of months ago, two women in a PSRC caregivers’ group discovered that both were looking after a mother who had chronic obstructive pulmonary disease (COPD). It was obvious, as they compared notes on where to buy oxygen, that each had also recognized in the other someone who knew exactly what she was living with — knew what it was like to lie in bed at night and listen to a mother’s labored breathing.
Hoskins explains that “the support groups are places where you can safely be vulnerable, exhausted, depressed, angry — people can say anything and everybody understands.” She recalls one woman whose mother criticized everything she did for her — a lifelong pattern. “We spent a lot of time helping her give herself permission not to visit her mother every single day, not to put herself constantly in a role where she felt abused.”
PSRC offers two groups that are open to all caregivers; both meet at the Suzanne Patterson Center. The first gets together on the second Tuesday of every month at 2 p.m. The second, which is co-sponsored by a national organization called CAPS (Children of Aging Parents), meets from 4:30 to 6 p.m. on the third Wednesday of the month.
Brief counseling: Some caregivers are so depressed or anxious that they need longer term therapy, and in such cases, Hoskins says, the center provides referrals. She and her staff offer brief counseling for others. She describes a fairly common situation: a family member struggling to determine whether an elderly relative should be in a nursing home.
“A lot of younger people think you go straight from independent living to a nursing home, but there can be stages in between,” says Hoskins. For example, those who can feed themselves but need help making meals can probably continue to live independently provided they have a home health aide for a couple of hours a day or Meals on Wheels, which delivers hot food to the homebound. Someone who must be reminded to eat and occasionally requires help in eating may need a full-time aide or an assisted living facility. “Our mission as an agency is to support people living independently as long as that’s safe and practical, and once it’s not, to help them adjust to the level of care they need,” she says.
Hoskins noted that the role of caregiver can be highly stressful. Medicare doesn’t cover the kind of help many families need most: a health aide to bathe, dress, feed, and/or toilet someone who can no longer do those things without assistance. Medicaid pays for some home care in some states including New Jersey, but only for those who qualify as low-income.
The typical family caregiver is a 46-year-old woman with a job who spends an average of 18 hours a week meeting the needs of her 77-year-old mother. She may ultimately invest more years in looking after her parents than she did taking care of her children. Women have traditionally shouldered the responsibility for the elderly and infirm, but that may be changing. According to one study, 44 percent of today’s caregivers are men.
Many people of both sexes experience caregiving as a balancing act, a continual struggle to meet the needs of the person they’re caring for without neglecting job or family. That was certainly true for Mark Lamar, executive director of the Family Guidance Center in Princeton, and his wife, Michelle Lebovitz Lamar, an attorney. For two years, Lebovitz’s mother lived with them. She was 79, had multiple medical problems, and used a wheelchair. Her husband had died a few years earlier. Looking at things from her point of view, her daughter and son-in-law understood that she didn’t want to be a widow, hated having to sell her home, and hated being trapped all day in a chair. Their own lives, however, were complicated by the fact that she wasn’t willing to try adult day care and found fault with the home health aides they hired. Her goal was to stay out of a nursing home, and she wanted to be cared for primarily by family, not strangers.
Lamar recalls that the time she lived with them was sometimes very good, with three generations under one roof and everyone trying hard to get along, and sometimes very difficult. “We had teenage children, and it was a growth experience for them,” he says. “They were called upon to be mature with their grandmother but at times they would see my wife and me getting pretty fried. They got a look at everybody needing and achieving more maturity. We tried to find ways to reduce the stress. It got to the point where going to work was a sort of stress reliever, because it was a get-away.”
Work was also part of the problem, however, because it was frequently disrupted by medical and other emergencies that required one or both of them to drop everything at the office and rush home. “But neither of us lost a job, and nobody even had unkind words for us at work, so we were fortunate,” Lamar says.
Three quarters of all caregivers have a full-time or part-time job, and according to a national survey, two thirds find that, because of their responsibilities, they have to work fewer hours or take an unpaid leave of absence. Some are forced to quit altogether. Employers lose between $11 billion and $29 billion every year because of workers who must care for adult relatives. The financial losses of employees are just as significant. Experts calculate that at the end of their working lives, caregivers come up about $660,000 short in wages, pension, and social security benefits they’d otherwise have earned. Few employers provide support such as flexible schedules or temporary reassignments during family medical hardship. Meanwhile, for those who are self-employed, the demands of caregiving can be disastrous.
That was true for Christina Rang, an artist who has her own business, painting murals on ceramic tiles — custom work commissioned by designers, architects, and high-end stores. If PSRC hadn’t intervened, she would have lost that business and her home because she didn’t follow the first principle of caregiving — that you have to look after yourself first or you can’t help someone else.
Rang is the sole caregiver for her aunt, 87, her mother, 89, and her 92-year-old father, all of them in poor health. Her relatives live in two separate apartments in Princeton’s Spruce Circle senior housing development, and Rang has her own place in Skillman. Because her parents and aunt come from Bulgaria and speak very little English, she felt she had to go along to doctors’ appointments to translate — some physicians actually demanded it. Between September and December of last year, she handled two medical emergencies and 24 visits to doctors; each visit took up about half of her day. She also picked up their prescriptions and helped with grocery shopping and other errands. With all the demands on her time, Rang found it harder and harder to work. “I thought I could handle anything, but I was exhausted,” she says. When she tried to find help by calling Medicare, Medicaid, and home health agencies, nobody returned her calls.
Unable to work, she fell behind in her rent. When she came to Hoskins two days before Christmas last year, her landlord was threatening to evict her at the end of the week, and she had other unpaid bills, as well. “I was losing my life and yet I still had to care for my family,” she says.
To get financial assistance and other help for Rang, Hoskins called on various resources, including the Salvation Army and the Crisis Ministry, a local non-profit that provides short-term assistance for emergency needs. PSRC also pulled together a bundle of services for her parents and aunt, including Medicaid, Meals on Wheels, a pharmacy that delivers, and the Statewide Respite Care Program, which provided a grant to pay for home health care. Rang coped with a mountain of paperwork to get some of these services, and PSRC helped with that, as well. By April both senior households had a home health aide coming in for at least part of the day, and Rang was able to work once more. “I’m digging myself out,” she says.
In the late 1990s, Americans spent $32 billion a year for home care for the disabled and elderly and $83 billion for nursing home care. Experts estimate that the value of the care provided by family and friends was a towering $196 billion. As policy makers look ahead to the way those numbers will balloon when the vast boomer generation grows old, caregiving has become a hot issue nationally, says Hoskins.
Many of the people who do intensive caregiving handle it alone, as Christina Rang did, and more than 60 percent suffer from depression. Increased financial support from the government would make a difference, as would more flexibility on the part of employers — and more places like PSRC’s caregiver’s center that can connect caregivers to the help they need.
Despite the stress of caregiving, Rang has no regrets. When she escaped from Bulgaria more than 30 years ago, her parents stayed behind, and she didn’t see them for almost 10 years. Now, for the first time since she was a teenager, she’s living close to them and can take care of them. “Physically, they’re falling apart, but they’re wonderful people,” she explains. “My dad still composes symphonic music, my mom is very sharp mentally, and my aunt is a very sweet person. I enjoy them tremendously.”
Princeton Senior Resource Center, 45 Stockton Street, Suzanne Patterson Center, Princeton 08540. 609-924-7108; fax, 609-497-1977. Www.princetonol.com/groups/senior.
Multi-purpose senior services center, providing opportunities for support and engagement to older adults — information and referral, counseling, support groups, health and fitness programs, enrichment classes, volunteer opportunities, and Evergreen Forum classes.
Alzheimer’s Association, Greater New Jersey Chapter, 12 Roszel Road, Suite C-201, Princeton 08540. Patricia Lombreglia, president and CEO. 609-514-1180; fax, 609-514-1188. Www.alznj.org
Provider of programs and services to those affected by Alzheimer’s disease.
Elder Care Solutions, 35 Welcome Farms Road, Monmouth Junction 08552. Bonnie Kramer, owner. 732-438-0731; fax, 732-438-6641.
Geriatric care manager.
Elder Options Inc., 56 Probasco Road, East Windsor 08520. Sydell Fagen BS CMC, elder care manager. 609-490-1194; fax, 609-448-1145.
Elder care planning and management, coordination of home care resources, post hospital discharge planning, alternative living arrangements, Medicaid applications.
My Parent’s Concierge, 219 Cornwall Avenue, Trenton 08618. Velvet G. Miller PhD, president & CEO. 609-394-7104; fax, 609-394-6501. Www.myparentsconcierge.com
Personal brokerage service for those making decisions on behalf of elder and dependent relatives, personalized beneficiary plan, household bill payment, personal services, health care arrangements.
Personal Paperwork Solutions…and More Inc., 614 Route 130 South, East Windsor 08520. Linda Richter, owner. 609-371-1466; fax, 609-371-0864. Www.ppsmore.com
Medical claim filing, bill paying, checking account reconciliation — other fiduciary services.
Princeton Financial Care Services LLC, 106 West Franklin Avenue, Straube Center Suite F-5, Pennington 08534. Hilly Berlin CPA. 609-730-0067; fax, 609-737-3787. Www.princeton-financial.com
Financial management and organization.
Senior Care Management, 261 Upper Ferry Road, Ewing 08628. Barbara Bristow LCSW and Janice McCurdy ACSW, partners. 609-737-8398; fax, 609-737-1220. Www.seniorcaremgt.com.
Professional care management (services and counseling) for older adults and their families, certified home health division providing long-term services for older adults.
Statewide Respite Care Program, 601 Hamilton Avenue, St. Francis Medical Center, Box 807, Trenton 08625-0807. Evelyn Hawrylak RN and Maryann Fordetta, co-coordinators. 609-599-5246 or 877-222-3737.
Assistance for caregivers — companions, homemakers, home health aides, social or medical adult day health care, private duty nursing, adult family care, in-patient care, and camperships.
Bayada Nurses, 168 Franklin Corner Road, Building 1, Suite 1, Lawrenceville 08648. Robin Rodriguez, director. 609-219-9600; fax, 609-219-0111. Www.bayada.com
Firstat Nursing Services, 3131 Princeton Pike, Building 5, Suite 101, Lawrenceville 08648. Chandani Juneja, president. 609-219-1400; fax, 609-219-1470.
Griswold Special Care, Washington Road, Building 6, Suite 615, Princeton Junction 08550. Joseph Mandala, director. 609-799-8856; fax, 609-799-7889. Www.home-care.net
Caregivers for the elderly and disabled — personal care, companionship, meal prep, light housekeeping, errands, and incidental transportation, hourly or live-in.
Health Force, 396 Whitehorse Avenue, Hamilton 08610. Janice Caloirao, branch manager. 609-581-8750; fax, 609-581-8760.
IDAM Home Care Services, 1607 South Olden Avenue, Hamilton 08610. Ian and Marie Griffiths, owners. 609-888-4844; fax, 609-888-3443.
Home care service to the elderly, sick, and disabled — registered nurse supervision and home health aides, licensed by the state.
Liberty Healthcare Services, 1603 South Broad Street, Hamilton 08610. Keith Shevlin, president. 609-392-6600; fax, 609-392-6781.
Accredited homecare provider — reimbursable by Medicaid, veterans’ benefits, HMOs, and private payments.
Maxima Healthcare, 1675 Whitehorse Mercerville Road, Hamilton 08619. Michael LaRosa, account manager. 609-890-6373; fax, 609-890-0645. Www.maxhealth.com
Mount Carmel Guild, 73 North Clinton Avenue, Trenton 08609-1097. Paula Maugans, administrative director. 609-392-5159; fax, 609-392-5903.
NurseFinders, 2211 Whitehorse-Mercerville Road, Suite D, Mercerville Professional Park, Mercerville 08619. Nancy Toll Perlstein, branch manager. 609-631-9112; fax, 609-631-9202.
Specializing in home health services — RN, LPN, CHHA and companions.
Princeton HomeCare Services/Princeton Healthcare System , 208 Bunn Drive, Princeton 08540. Barbara Yost, director. 609-497-4900; fax, 609-497-4933. Www.princetonhcs.org
Home health care and hospice services — skilled nursing, psychiatric nursing, maternal/child health visits, wound care, physical therapy, occupational therapy, speech therapy, medical social service, home health aide service, clergy, home infusion therapy, hospice care and Lifeline emergency response system.
S J Nurses Inc., 850 Hamilton Avenue, Trenton 08629. Conrado N. Poblete, president, CEO. 609-396-7100; fax, 609-396-7559.
Trauma Nurses Inc., 1435 South Broad Street, Trenton 08610. Nancy Knight, president. 609-393-3933; fax, 609-396-7432.
Visiting Nurse Association of Mercer County, 171 Jersey Street, Box 441, Trenton 08603-0441. JoAnne Ruden MPA RN, CEO. 609-695-3461; fax, 609-695-4222. Www.vnahomecare.org
Home health and hospice agency serving the Greater Mercer County area, also Community Hospice Inc.
Chandler Hall of Princeton: the Club Program, 600 Mercer Street, Stonybrook Settlement House, Princeton 08540. Kay Leahy, coordinator. 609-924-9715; fax, 215-504-4407. www.chandlerhall.org
Socialization and support program for adults with early stage memory loss.
Home Instead Senior Care, 379 Monmouth Street, East Windsor 08520. Julie Shea, owner. 609-448-7555; fax, 609-448-8449. Www.homeinstead.com
Home Instead Senior Care, 1901 North Olden Avenue, Suite 6A, Ewing 08618. Bill Velez, owner and president. 609-530-0600; fax, 609-530-0511. Www.homeinstead.com
Non-medical caregiving services — housekeeping, meal preparation, medication reminders, transportation, companionship services, respite care, short or long term— hourly, overnight, AM live-in service available.
Senior Medical Day Care, 1450 Parkside Avenue, Suite 7, Ewing 08638. Jean Bazzo, administrator. 609-883-0200; fax, 609-883-1974.
Some of these communities also offer assisted living and nursing services.
Bear Creek Assisted Living, 291 Village Road East, West Windsor 08550. 609-918-1075; fax, 609-918-1095. Www.bearcreekassistedliving.com
Assisted living and retirement community with 86 units, for 100 residents, including dementia/Alzheimer’s unit, also studios and one and two bedroom units, also respite care.
Clearbrook Community Association, Clearbrook Clubhouse, Monroe 08831. 609-655-2706; fax, 609-655-9688.
Concordia Clubhouse, Prospect Plains Road, Monroe Township 08831. 609-655-4464.
Monroe Village, 1 David Brainerd Drive, Jamesburg 08831-1900. 732-521-6407; fax, 732-521-6456. Www.phsnet.org
Oak Woods Inc., 700 Woods Lane, Monmouth Junction 08852. Christina Agrait, site manager. 732-355-9009; fax, 732-355-9012.
Subsidized independent living for seniors.
Presbyterian Home @ Meadow Lakes Inc., 300 Meadow Lakes, Hightstown 08520-3321. Sharon D. Eldridge, executive director. 609-448-4100; fax, 609-448-5380. Www.phsnet.org
Continuing-care retirement community, nonsectarian, affiliated with Presbyterian Homes of New Jersey, — 270 independent apartments, 28 assisted living units and 64 skilled nursing beds on 103 acres.
Princeton Windrows, 2000 Windrows Drive, Princeton Forrestal Village, Princeton 08540. 609-514-0001; fax, 609-514-0005.
Independent residential community with 294 homes, dining facilities, indoor pool, wellness center and tennis center.
Stonebridge at Montgomery, 100 Hollinshead Spring Road, Skillman 08558. Myra Greenberg, marketing director. 609-683-8355; fax, 609-683-8358.
Lifecare retirement community — independent, assisted, skilled nursing, and Alzheimer’s units.
Acorn Glen, 775 Mount Lucas Road, Princeton 08540. Fern R. Spadafino, executive director. 609-430-4000; fax, 609-430-4001. Www.acornglen.com
With 88 apartments for assisted living, 12 apartments for memory care.
Buckingham Place Assisted Living and Adult Day Center, 155 Raymond Road, Princeton 08540. Thomas J. Kelly, executive director. 732-329-8888; fax, 732-329-8813.
Assisted living and adult day health services, Alzheimer’s care, physical therapy, short-term stays, Medicaid provider.
CareOne at Hamilton, 1660 Whitehorse-Hamilton Square Road, Hamilton Square 08690. Christine Lapid, administrator. 609-586-4600; fax, 609-587-4500. Www.care-one.com
Assisted living facility, skilled nursing and rehabilitation, and long-term care including Alzheimer’s also respite care and physical therapy.
Castle Senior Living at Forsgate, 380 Forsgate Drive, Jamesburg 08831. Lynn Osborne, director. 609-409-7525; fax, 609-409-7529.
Assisted living residence with 99 units and an Alzheimer’s wing, operated by Castle Senior Living LLC.
Alterra Clare Bridge of Hamilton, 1645 Whitehorse-Mercerville Road, Hamilton 08619. Danielle M. Nutt, residence director. 609-586-4000; fax, 609-586-8300.
Specialized assisted living for the memory impaired in a purposefully designed homelike setting.
The Elms of Cranbury, 61 Maplewood Avenue, Cranbury 08512-3295. Anita M. Dietrick, administrator. 609-395-0641; fax, 609-395-8608.
Greenwood House, Home for the Jewish Aged, 53 Walter Street, Ewing 08628-3085. Richard Goldstein, executive director. 609-883-5391; fax, 609-530-1635.
122-bed nonprofit nursing home for the Jewish aged with skilled nursing and assisted living, private pay and Medicaid.
Morris Hall: St. Mary’s Assisted and Residential Living , 1 Bishops’ Drive, Lawrenceville 08648. Mark Sorrento, administrator. 609-895-1937; fax, 609-896-8037.
70 suites and apartments offering a la carte services and up to five levels of assistance in an independent, homelike atmosphere.
The Pavilions at Forrestal, the Residence, 1000 Windrows Drive, Princeton 08540. Diane Delaney, administrator. 609-514-9111; fax, 609-419-1326.
Residence at Forsgate, 319 Forsgate Drive, Monroe Township 08831. Carolann M. Koerner, administrator. 732-656-1000; fax, 732-656-0081. Www.residenceatforsgate.com
Assisted living residential facility with social and recreational facilities and personal and medical assistance, 125 units, including early Alzheimers unit, rehab center on site.
Rose Hill Assisted Living Community, 1150 Washington Boulevard, Robbinsville 08691. 609-371-7007; Www.rosehillassistedliving.com.
Stony Brook Assisted Living, 143 West Franklin Avenue, Taylor Commons, Pennington 08534. Ellen Moyle, executive director. 609-730-9922; fax, 609-730-9923. Www.phsnet.org
Assisted living community affiliated with Presbyterian Homes and Services with 96 units
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