EVERYTHING
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Jerry Slusiewicz considers he and his wife among the fortunate: Their parents still bring much joy and richness to their lives. Like many others, though, the Laguna Niguel residents have been touched by the challenges that come with aging parents. Last year, for example, the 42-year-old took an unexpected flight to Michigan after his father was rear-ended by a drunk driver. To ease his parents' fears and confusion, he helped them purchase another car, dealt with his father's doctor, an attorney and assisted with the accident report. The prior year, his father-in-law suffered a heart attack, which sent the couple to Las Vegas to assist. The Slusiewiczes are not alone. Nearly one-quarter of American households (22.4 million) are involved in the caregiving of an elder, age 50 or older, according to statistics from the Family Caregiver Alliance. Projections show this figure could increase to 39 million by 2007, or more than one-third of households, millions of which also are filled with school-age children.. "We're still in a really good situation, but it is still time-consuming and there are stresses involved from a caregiver's point of view," says Slusiewicz. This holds particularly true for families, such as this couple who have children at home. They are the parents of a 4-year-old daughter and 3-year-old son. THE SQUEEZE Defined as the Sandwich Generation, millions of adult children are squeezed between the needs of aging parents and the demands of their own children, spouses and, in the majority of instances, work and careers. Data from CareGuide.com shows that more than 9 million Americans fall within this growing trend. More and more, grandchildren are being added to the mix as well. "The Sandwich Generation is not just a single sandwich," says Blanche Katz, a community educator at the Council on Aging-Orange County. "It's kind of a double-decker because you'll have 90-year-old parents who have 70-year-old children, who have 50-year-old children, who have 30-year-old children. So because we are all living longer, different generations are looking after each other." The role may stem from gradual mental and physical deterioration. Or, the responsibility may be suddenly assumed after a debilitating fall, stroke or heart attack. In both cases, families often are unprepared. "You think of your parents as the ones who raised you and the thought of literally having to take care of them is just so contrary (to your upbringing)," says Karen Fera, who co-owns Home Instead Senior Care in Brea with her husband, Allan. "So I think it's something that people sometimes just don't even consider or perhaps they deny for very long periods of time." The best time to prepare is while your elderly relatives are still healthy so they, too, can be a part of the process. It also is important, says Slusiewicz, to make sure you have access to necessary information in the event of a crisis. He and his wife, for example, now have a list of their parents' doctors, phone numbers, medications and doses. Other information, such as their attorneys, bank accounts and insurance policies are tucked away in a safe box. "Parents don't have to disclose everything, but they should have a record written, even if it's in a notebook, that says (where everything is)," he says. BE PREPARED Other caregivers, such as Michelle Lopez of Seal Beach, are caught off-guard by how quickly their loved one's health can slip. The mother of two young children, the 34-year-old lives with and cares for her grandmother, who has been diagnosed with Alzheimer's disease. "Because she's had some stressful things go on (such as the death of her husband), she progressed very quickly," says Lopez. "Like all of the sudden she was really hallucinating; all of the sudden she was very violent, very angry. "She's now become my daughter. I have three children now. I have a sitter for her; I do her medicine; I tuck her in - everything that I do for my own children." Being a parent is a juggling act in itself. Homework, after-school activities, doctor and dental appointments, meals and drop-of-the-hat temper-tantrums. Add in health-related situations that often accompany the elderly - incontinence, wandering, the need for assistance with walking and bathing - and the depth of the responsibility quickly becomes clear. Where does one turn and what resources are available for families who have an elderly parent or grandparent in need of assistance? In the past, many seniors automatically moved in with their children and stayed until their death. Some still do; others choose, or have chosen for them, other living arrangements. And in the past, Americans didn't live as long. Modern medicine and better diet and fitness have pushed the average lifespan well into the 70s. BY THE NUMBERS According to a Chapman University report, Orange County residents ages 60 and older totaled 391,000 in 2000, about 13.5 percent of the population. That figure is expected to jump to 531,000 in the year 2010 and to even higher numbers beyond. Already, Orange County ranks eighth among all U.S. counties in the total number of seniors over age 65. Increasing demographics among the elder population, along with changes in society - particularly the number of working women whose time is gobbled up by work and children - have fueled a demand for assisted living services. "I think the assumption as we were all growing up was that once you get to a certain age that you're automatically put in an old people's home or that a child takes care of the parent," says Fera. "I think part of the problem was that nobody even realized that there were other options." Indeed, a number of choices exist to meet the growing demand for senior services. Home-care agencies, such as Home Instead (which has four locations in Orange County and hundreds nationwide), offer an array of services. Staff members drive elders to appointments, help with bathing and personal care, perform light housekeeping and serve as companions. Services are available for as little as three hours, as needed, to 24-hour care. Such an approach allows elders to stay in their own home as long as possible, which helps foster independence. It's also a popular choice among adult children involved in long-distance caregiving and for families who have an elder relative living within their own home. "A lot of parents, I think, resent the fact that someone is suggesting that they need help. They don't want their independence taken away. They don't want their integrity questioned," says Fera. "Rather than them fearing that their independence is being taken away, they need to understand that by having some additional help, it's going to enhance their independence. I think that's the biggest fear: loss of independence." Adult day-care centers provide another option for those still in the home, but in need of assistance. Similar to the concept of child-care centers, seniors are dropped off or transported each weekday. Services range from social and educational activities to comprehensive medical treatment. Currently, there are more than 20 adult day-care centers in Orange County. When the situation requires that someone live outside the home, referral agencies like Costa Mesa-based United States ElderCare Referral Agency offer a starting place. According to Executive Director Robert Rosenberg, the agency receives nearly 800 calls per month. Three of every four calls come from adult children of aging parents or grandparents. The agency represents all licensed facilities in California. Its Orange County database includes more than 80 skilled nursing facilities, 77 assisted living facilities that serve 100 residents or more, and approximately 730 residential care homes. Referrals are supplied based on the level of required care, financial situation and desired location. A free community service, a list is either mailed or faxed within 20 minutes to an hour. This month, the agency will begin forwarding referrals via e-mail for those who desire. The organization also maintains a list of adult day-care centers in the area and tips on how to choose one. Other offerings include referrals to other organizations that assist with elder-care issues, check lists guides for choosing an assisted living facility and a "Tips for Caregivers Series," which addresses caregiving issues such as wandering, bladder and bowel problems, safe environments and more. "My main advice for the children of aging parents is to...try to plan and educate themselves on what services and what programs are available to ease the caregiving pain," says Rosenberg. "You have to have some level of balance. Otherwise, you'll cause problems for your own family and your job." OTHER OPTIONS Like in-home services, options are plentiful for out-of-home assistance. Karen Reese, for instance, recently sought the service of a nursing home for her 89-year-old mother-in-law after nearly five years of her bouncing back and forth from her home in Utah to the Reese's home in La Habra as well as repeated hospital stays. "She had gotten to the point where it was impossible to take care of her at our home because her needs are greater than we can provide," says the 65-year-old. "It wasn't just taking food to her or visiting with her. It was actually physically having to help her up so she could get into the bathroom." The situation was further compounded by a diagnoses of manic-depression which resulted in psychotic episodes, and three young grandchildren, ages 8, 3 and 3 months, who also live in the couple's home along with their 25-year-old daughter and her husband. As trying as their situation has been, the Reeses are among the fortunate: They have the available financial resources to pay for assistance. While care options are plentiful, financial assistance is another story. The big problem - custodial care. "That's a huge gap in health insurance coverage in the United States and most people don't realize that it isn't a benefit," says Wen Daniels of Health Insurance Counseling and Advocacy Program. "Few people understand how many gaps there are in the entire spectrum of health care." Considered a non-medical expense, custodial care is not covered by Medicare. Even though some elders are unable to walk or feed themselves, Medicare does not pay unless the patient requires a skilled nurse to assist with a specific medical need. If no funds are available, says Wen, families can take advantage of MediCal benefits in a long-term care facility, such as a nursing home. SSI can provide financial relief if certain criteria are met. A person must be 65 or older, blinded or disabled, and have a limited monthly income of approximately $770 and no more than $2,000 in resources per individual or $3,000 per couple. It's also not always an easy task obtaining eligible reimbursement and recognizing unfair practices. Agencies exist to respond to benefit violations. Health Insurance Counseling and Advocacy Program, for example, assists with insurance disputes for Medicare and HMOs. They help obtain medical reimbursement when a patient is released too soon from a hospital and handle applicable appeals. They also assist with insurance companies who deny referrals to specialist or for needed medical procedures. For problems with government benefits including MediCal, Social Security or SSI, the Senior Legal Advocacy Program in Santa Ana is the source for assistance. Katz, of the Council on Aging-Orange County, uses this analogy to sum up the caregiving experience. "It's a marathon; it's not a sprint," she says. "It's kind of like a process. I think the No. 1 thing people need to realize is that they can only handle what they can handle and just kind of pace themselves." Care for the Caregiver Michelle Lopez is one of those rare individuals who can find peace and joy in even the most trying circumstances. Separated from her husband for nearly three years, the Seal Beach resident is learning the ropes of single parenthood while caring for her 85-year-old grandmother. In between, she works part time. "It's been 2 1/2 really tough years," says the 34-year-old. "I left a bad situation to almost a worse situation. It is a burden at times, but through that burden I have purpose." While the mother of two young children, ages 3 and 5, admits to the challenges, she's more focused on the blessings that also come along. Her children, for example, are learning about patience and tolerance. They are learning about caring for a loved one. And they get to play in the same house where their mother used to play when she was a young girl. Indeed, a positive attitude goes a long way. To keep her spirits up, Lopez makes sure to take time out for herself. She gets together with her girlfriends for an evening out each week or simply goes out for a movie by herself. A marathon runner, she make time for workouts as well. She also receives assistance from a home health-care agency. "Yes, I have my days where I'm exhausted," she says. "But you just kind of have to learn to be grateful, find the gift, be appreciative." "I have faith," she adds. "And I think that makes a difference, too." Here are some additional tips for caregivers from the United States ElderCare Referral Agency. • Join a support group. • Enlist help from family and friends. • Recognize that feelings of frustration, sadness, anger and depression are normal under the circumstance. • Find a safe person - a friend, relative, counselor or another caregiver - to talk with about your feelings. • Avoid isolation. • Remember, you will be better able to care for another if you take time for yourself. - By Sandy Bennett One-stop local resource Whether you are looking for a caregiver support program to attend or want to contact the Alzheimer's Association, the Council on Aging-Orange County serves as a one-stop information center for older adults and their families. Located in Santa Ana, the nonprofit agency offers an array of programs. Here are just a few of the services it provides. • Linkages connects frail older adults with established services in the community to help them stay in their own homes. It also connects primary caregivers with respite assistance to help prevent burnout. • The Health Insurance Counseling and Advocacy Program (HICAP) provides free counseling and educational services to help families find their way through the maze of health insurance regulations and coverage. • ACIS (Adult Care Information System) assists the public in making informed decisions on residential care facilities. • Aging Parents Seminars are offered on an ongoing basis. Among the topics: handling a crisis, distance caregiving and surviving the stress of parent care. (The next session begins Sept. 6. Cost is $40 per person and $60 per couple.) • Resource Links connects individuals to an array of elder-related sites. The Alzheimer's Association, Orange County, agencies that offer meal programs for seniors and the Orange Caregiver Resource Center (services consist of support groups, education, respite for caregivers and more) are among the numerous organizations listed. The Council on Aging-Orange County can be reached via the Web at www.coaoc.org or call 714.479.10107. Long-distance caregiving For assistance with long distance caregiving, visit www.careguide.com or call the ElderCare Locator at 800.677.1116. Both offer nationwide listings of elder care facilities. Outside assistance Here's a look at outside living assistance, what they are, and expected costs in Orange County. Assisted living inns • Designed for the elderly who are alert and independent. • Typically serves from 100-300 seniors. • Services include community dining, housekeeping, social activities and transportation. Many also offer assistance with daily living. • Average prices range from $900-$1,500 per month for a shared room and $1,600 -$2,700 for a private room. Assisted care costs are extra, averaging between $300 and $900 per month. Residential care homes • Services provided in a private home setting. • Caters to the more frail elderly needing one-on-one supervision. • Offers 24-hour care and supervision, three daily meals, monitoring and dispensing of medications, help with bathing, dressing and walking. • Average prices range from $1,000-$2,500 per month for a semi-private room and $1,800-$4,000 for a private one. Nursing homes • Designed for those requiring intense care, often from a skilled nurse under the direction of a doctor. • Daily rates average $120-$180. Secured facilities • Designed for wandering elders, particularly those affected with Alzheimer's and similar diseases. There are 15 secured units in Orange County. • Average cost runs between $1,800-$5,000. Continuing care facilities • Similar to one-stop shops, a number of continuing care facilities exist in the area. Here independent living, assisted living and skilled nursing are available at one location, allowing seniors to change their level of assistance within the same complex. • Pricing structures vary, but typically are very expensive. When selecting a facility, be sure to ask to see its license and the deficiencies and citations report. Source: United States ElderCare Referral Agency |
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