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Navigating the Golden Years

Are your parents starting to age?


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I thought my mom was ageless. At 75, she looked 10 years younger and was always on the go. She shunned the local senior center, claiming she didn’t want to spend her days "hanging around old people." When my son, her first grandchild, was born in 1998, she wholeheartedly embraced being a grandma. I loved watching her sing and play with Nikolas.

And then a year later, my mom was diagnosed with Parkinson’s disease. She suffered a broken hip and a series of strokes, and seemingly overnight I found myself parenting both my mother and my young son.

Two years after her diagnosis she died, but not before my husband, Jeff, and I had gone through a crash course in finances, home care, assisted living, and nursing homes that left me wishing someone had given me an idea of what I was getting into. >>>

With 14 million Americans expected to need long-term care within 15 years, many people will face an experience similar to mine. I hope that a health-care crisis doesn’t hit your family. But if it does, I’ve talked to everyone from caregivers to financial planners to give you an idea of what you should think about, what you should look for, and what you should do to meet the challenge.

{Talk Early, Talk Often}

Aging doesn’t always bring incapacity, but as I witnessed with my own mom, bad things can happen suddenly. That’s why it’s never too early to begin talking to your parents or spouse about topics including finances, medical care, and housing.

"It’s a conversation no one wants to have, but it’s also one that can save families time, guilt, and grief later down the road," says geriatric-care consultant Helene Harris. "You need to talk with your parents before a health-care crisis hits."

Even if your mom is 86 and you’re 54, you will always be her baby. So when you bring up issues of health, competency, finances, and living arrangements, it’s important not to come across sounding like a parent.

Try broaching the subject based on something you saw on the news about the elderly—the whole Social Security issue, for example—or by casually mentioning the new independent living center that opened in your neighborhood. You can also try the "I" approach. Linda Fodrini-Johnson, MFT, a geriatric-care manager and owner of Eldercare Services in Walnut Creek, suggests saying something like, "Mom, you have always taken good care of me. Someday, I might need to take care of you, and I want to learn what’s important to you."

One goal of talking to your mom, Danville-based Harris suggests, is developing an emergency card. She says you should document your mom’s date of birth, doctors, allergies, medications, medical issues, advance directives, insurance information, prior surgery, and whether or not she uses alcohol or tobacco. The Family Caregiver Alliance, a San Francisco-based nonprofit that assists caregivers, has a form that can help you make sure you’ve got all the right information. Download a copy from its Web site at www.caregiver.org, or call (800) 445-8106.

{Get Power of Attorney}

Eldercare experts also suggest setting up durable powers of attorney for finances and health care. A power of attorney is a document that gives you the right to act on your mom’s behalf if she becomes incapacitated. Your mom can set up powers of attorney in advance, a move that can save you time and trouble should a sudden illness hit home.

If you have durable power of attorney for your mother’s finances, you will have access to her assets to pay doctor, nursing home, or hospital expenses. If your mom hasn’t prepared such a power of attorney, a court proceeding is probably unavoidable. You would have to go before a judge if you wanted to use your mom’s money to help pay her way—even for the simplest of bills.

If your mom is married, her spouse would have some authority over property they own together, from stocks to homes. For example, he’d be able to pay your mother’s bills by drawing from a joint bank account. He would not, however, be able to use any money from an account your mom had set up under only her name; for him (or you) to be able to do so would involve a court proceeding.

A durable power of attorney for health care gives you authority to make all medical decisions for your mom if she becomes unable to make those decisions herself. If your mom is uncomfortable with you making the call about a surgical procedure or the donation of her organs at the time of her death, she can limit your authority on the forms used to establish power of attorney.

"If you don’t have a durable power of attorney, you will still receive medical care, but any sensitive decisions concerning your care would be made by a physician or a health-care panel at the hospital," says Anne Rosenthal, director of community services at the Reutlinger Community for Jewish Living in Danville.

Deciding who has power of attorney can be difficult for a family. One solution is for the oldest child or the sibling living closest to the parent to have power of attorney over health care, while a brother or sister living farther away has oversight over finances. Whatever the solution your family chooses, everybody should be on the same page to avoid confusion or resentment. Power of attorney forms will also allow your mom to name you as the primary agent of her care, and list your siblings as alternate agents.

You can find durable powers of attorney forms at hospitals and office supply stores. You can also download free copies through the California Coalition for Compassionate Care Web site at www.finalchoices.calhealth.org.

{Advance Directives Are Good}

A major part of any discussion of durable power of attorney for health care should be advance directives. These are health-care instructions that are made in advance, and are put down in writing—usually as part of the power of attorney paperwork.

One of the most important advance directives that can be made is authorizing a do-not-resuscitate order, commonly known by medical professionals as a DNR.

With a do-not-resuscitate order, there isn’t any question about what to do if your mom suffers a massive heart attack. The hospital staff would know that she doesn’t want to be resuscitated, and they would not attempt to provide life-sustaining treatment or medication. This doesn’t mean that your mom will receive no care.

"Even if they specify they do not want to be resuscitated," says Rosenthal, "they will still receive comfort care [also known as palliative care] such as pain medications, until they die, but they won’t receive unnecessary heroic measures."

When your mom has filled out the power attorney forms with their advance directives—including the do-not-resuscitate order—she can either have it notarized or signed by two witnesses. Those witnesses must be disinterested parties; they cannot be anyone given power of attorney, a caregiver, or an employee of her health-care provider or any home she might be living in.

The forms should then be filed with your mom’s doctor and at her local hospital. Other family members and caregivers should also be alerted, including her nursing home or assisted-living facility.

Rosenthal also advises posting a copy of your mom’s do-not-resuscitate order on the door of her refrigerator at home. That way, if an ambulance is called to your mom’s home, paramedics will know what steps to take if they respond to an emergency call.

{Pay Attention}

Once you are confident that you’re prepared for any financial or health contingency, your job caring for your mom is just beginning. Now, you must pay attention to her health and well-being.

"We get a lot of calls right after the holidays from clients who are worried about a family member," says Fodrini-Johnson of Eldercare Services. "They notice mom seems forgetful, or that dad keeps repeating himself, but they aren’t sure if they are overreacting or if something is really wrong."

If you notice your mom having difficulty with everyday living activities, address the problem head-on before it escalates.

"If your mom’s house has always been immaculate and suddenly it’s a total mess, ask her about it," says Fodrini-Johnson. "If she denies there is anything wrong with the house, I’d be suspicious of dementia. If she says she doesn’t have the energy, or doesn’t feel like cleaning, she might be suffering from depression. If you notice changes in her health or her mental condition, it might be time to reassess her needs and seek professional help."

{Get Help}

Susan Reynolds could write a news release for her Walnut Creek marketing business in her sleep. But when it came to navigating the eldercare system, she felt alone and overwhelmed.

"My mom’s health was failing, but she wouldn’t listen to me," Reynolds says. Her mother, Marian, suffered a broken hip, a stroke, and a bout with pneumonia over the course of several years, but was still fiercely independent. "My mom finally listened when her doctor said she couldn’t remain at home without some assistance."

Doctors offer a good starting point for you to get help figuring out your mom’s condition and prognosis—and how to get it across to her that something serious is going on—but most physicians are not experts in advising families on the pros and cons of assisted-living facilities and nursing homes.

Hospitals aren’t much help either. They have a discharge planner or a social worker on staff to help you face the reality that your mom can’t go home. But the assistance they give is often limited to handing you a sheet of paper listing different care facilities. They don’t make recommendations or handle any details for families.

Geriatric-care managers can help you make these decisions. Trained in the fields of gerontology, social work, or nursing, geriatric-care managers serve as patient advocates and work as liaisons between families and health facilities. They are especially useful for families who are juggling child-rearing and work responsibilities with caring for an elderly parent. They can be especially helpful if your mom lives in another state.

"Many of the families I work with say they wish they knew about geriatric-care managers sooner, because it would have saved them time and money," says Rosenthal, who, in addition to her executive position with the Community for Jewish Living, is a geriatric-care manager.

Geriatric-care managers are knowledgeable about all local eldercare facilities so that they can help you decide what options would be best for your mom. They are responsible for keeping up to date so that they can help you come up with a personalized care plan.

A care plan involves identifying your mother’s medical condition, recommending the level of care she needs, and finding facilities that best meet her health needs. A care plan also includes a budget (how much you, she, or a combination of both can afford, and for how long) and strategies for monitoring the care your mom receives. You should know that one plan is usually not enough. Periodic reassessments are required if your mom’s situation or status changes.

You pay an hourly fee (typically $80–$150 in the Bay Area) for a geriatric-care manager’s services. It takes a geriatric-care manager two to four hours to do an assessment of your mom’s needs and to come up with an initial care plan.

If you think a geriatric-care manager would help you make sure your mom receives the best possible care, contact the National Association of Geriatric Care Managers at (520) 881-8008 or www.caremanager.org. (A quick search revealed that there are at least 17 geriatric-care managers in the East Bay.)

If you can’t afford the help of a geriatric-care manager and are at the point of having to find an assisted-living or residential care facility for your mom, you may want to turn to an independent geriatric-care consultant like Helene Harris. Geriatric-care consultants differ from geriatric-care managers in that they do not advise on long-term planning or hire on as advocates for your mom. They only help families find assisted-living or residential care facilities. They do not charge families for their services, but do receive a stipend from the facilities. Because they have a single contract with all local facilities, their recommendations are unbiased.

The bottom line is that in a world where just taking care of our own health care needs can be confusing, there is help available.

{Home Care or Nursing Home?}

If your mother falls and breaks a hip, not only will her life change overnight—so will yours. Knowing the different levels of care available to her will make it easier if the hospital discharge planner says your mother can’t return home.

Level of care refers to the intensity of the medical care provided to your loved one. It ranges from daily living assistance at home to around-the-clock monitoring in a dementia unit at a nursing home.

Even if you think you don’t need to make a choice—that you can handle whatever comes your way by taking care of your mom yourself at home—you may still need some help.

"I’m a nurse, but if one of my parents had dementia, I could not adequately care for them at home on a daily basis," says Kathy Sommese, RN, a clinical nurse supervisor with Addus Home Healthcare, a national licensed care agency with offices in Concord. "Families need to realize their limitations, and that it’s OK to ask for help."

Housing Option 1: Home Care

The first option for many families is home care, where a caregiver comes to your mom’s or your home. There are two types: unskilled and skilled medical care.

Unskilled home care is also called supportive, custodial, or unlicensed home care (the unlicensed coming from the fact that the caregiver is not a registered nurse or otherwise subject to regulation). The typical help your mom could expect from unskilled home care includes assistance with housekeeping, meals, shopping, bathing, and toileting. Oftentimes, help with self-administered medications, walking and exercises, and transportation to medical appointments are also part of unskilled care.

Such services can help your mom avoid relocating when her declining health threatens her independence. If you are committed to keeping your mom at home, unskilled home care can be arranged for any amount and frequency of time, including up to 24 hours every day or on a respite or temporary basis.

A big caveat with this type of care, however, is that unskilled could mean exactly that.

"If you hire an in-home caregiver without the aid of an agency, you are often taking a chance, since the care isn’t regulated or supervised," says Community for Jewish Living’s Rosenthal. "And you are liable for worker’s compensation and all other employer fees."

Unskilled, unlicensed custodial care costs about $30 an hour to $150 per day, if the caregiver lives-in—and that’s the low end. You can obtain referrals for in-home caregivers by calling Contra Costa Aging and Adult Services at (800) 510-2020. Alameda County has a registry of caregivers at www.ac-pa4ihss.org/content/2.asp. If you choose this route, you may want to contact an organization such as Fodrini-Johnson’s Eldercare Services: At least the unskilled caregivers it provides will be working under the supervision of Eldercare’s geriatric-care managers.

Skilled in-home care usually follows discharge from the hospital. Patients, while well enough to go home, must require skilled nursing care and be incapable of leaving their homes.

A registered nurse (or nurse’s aide) will visit your mom for a set period of time—anywhere from several weeks to several months—to look after her health needs. These visits, which can occur daily or several times a week, are ordered by a physician and are typically paid for by Medicare, the insurance program for people 65 and over that is run by the Social Security Administration. Medicare will also pay for any medical equipment needed in the home, as well as for wound care and physical therapy.

Once your mother is ambulatory, Medicare ceases covering home visits and pays for her to receive physical therapy, or other assistance, on an outpatient basis through a local hospital.

If money isn’t a concern and you want to keep mom in her home with skilled care, you can pay for a licensed health-care worker on either an hourly (typically with a four-hour minimum) or on a live-in basis. Fees start at $25 an hour. The California Registry (800-777-7575) can provide a list of licensed in-home caregivers in your area.

Housing Option 2: Independent Living

If your mother can no longer live on her own but doesn’t need continuous care, independent living (also known as senior or retirement) housing may be her best option. These complexes rent apartments that are adapted for seniors, with railings in the bathrooms and power outlets placed higher on the walls. Other services offered by these communities often include some meals, transportation, housekeeping, and activities. Some independent living complexes offer a discounted rent to seniors on a limited budget. One example is Byron Park in Walnut Creek, where one-bedroom apartments (and one meal a day) for independent seniors start at $32,340 per year.

Housing Option 3: Assisted Living

If your mom needs help with medications and daily activities, and can no longer live in her own home, you should consider an assisted-living facility or a residential board-and-care home.

Assisted living is a good option if your mom needs help with daily tasks but still wants to remain as independent as possible. These facilities are not licensed to provide medical care, but their staff can help your mother take her medications, bathe, and dress. Some facilities also have on-site beauty shops, planned trips, shuttle rides to grocery stores and doctor’s appointments, and a full activities calendar.

"The cost of a shared room in a Bay Area assisted-living facility averages around $33,000 a year, but this only covers the basics," says Harris. "If your parent becomes incontinent or needs [more] care, this rate will increase. And if your family member’s health deteriorates, causing [her] to wander or become combative, [she’ll] need to move to a nursing home."

If a shared room isn’t an option for your mom, expect the baseline cost to double. Byron Park in Walnut Creek offers one-bedroom apartments in its assisted living wing starting at $53,580 per year.

Another form of assisted living is a residential board-and-care home. Operated out of private homes, these facilities offer a smaller setting with a typical population of four to eight adults. The average cost of a shared room at a board-and-care home in the Bay Area is around $20,000 per year, and includes 24-hour care administered by an unlicensed live-in provider, meals, and help with personal hygiene. While some see this as an alternative to a larger, more institutionalized facility, Rosenthal advises proceeding with caution.

"There are some good board-and-care homes, but because they are smaller and independently owned, they are harder for the state to closely monitor, and many of them operate under the radar," she says.

Housing Option 4: The Nursing Home

Nursing homes, or skilled nursing facilities, provide classic, hospital-type 24-hour medical care for people with chronic debilitating illnesses, such as Alzheimer’s or advanced rheumatoid arthritis.

In the Bay Area, a shared room in a complex of 100-plus beds typically runs $72,000 per year for nursing care, meals, room and board, and activities. A private room costs $98,550 per year. This does not cover the cost of medications or incontinence supplies.

Housing Option 5: Continuing-Care Retirement Communities

Continuing-care retirement communities offer seniors a full range of housing and health-care options—from independent living to 24-hour skilled nursing—in one location. This makes it convenient if your mom and dad have different care needs but want to remain together. For example, your healthy mom might live independently in an apartment, while her spouse receives skilled nursing care in a different building on the premises.

Like other retirement communities, continuing-care complexes offer meals, housekeeping, transportation, nursing care, personal assistance, and recreation. Examples of continuing care retirement communities in our area are Oakland’s Piedmont Gardens or the Reutlinger Community for Jewish Living in Danville.

An off-shoot of this type of care are life-care communities, where upon entering, your mom signs up to have her routine health needs handled for the rest her life. Of course, routine is defined differently by each community, and typical things that can be excluded include prescriptions and transplants. A local example of a life-care community is Oakland’s St. Paul’s Towers.

Eldercare experts caution that both continuing-care and life-care facilities often require residents to sign a complex contract, with most costs financed out-of-pocket. Fees depend on the level of service your mom requires. She could sign a contract for extensive care, where every eventuality is covered, or just pay for things, such as skilled nursing, as they come up in a fee-for-service contract. Entry fees for both types of communities can range from $50,000 to $650,000, with annual costs running between $29,352 and $86,952.

{Find the Best Place}

To help get you started on the right path when looking for a home for your mom, visit the California Advocates for Nursing Home Reform’s Web site (www.nursinghomeguide.org), which lists all area assisted living facilities and nursing homes.

For detailed information—and ratings—on board-and-care homes, assisted living, home care, and other services, call the California Registry at (800) 777-7575. You can access this information at no charge.

It almost goes without saying that you need to find a facility that fits your budget. Unless you have a nearly unlimited bank account, you need to select a Medi-Cal–certified facility. (Medi-Cal is a federally aided, state-operated and -administrated program that provides medical benefits for certain low-income persons in need of health and medical care. In other states, this program is known as Medicaid.) By choosing a Medi-Cal–certified home for you mom, you would assure that when her—or your—money ran out, the state would step in and pick up the tab.

While many nursing homes are certified for Medi-Cal, such certification is not mandatory, and many facilities are private-pay only.

Before you say that the distinction doesn’t matter, remember that the average private-pay rate in a Bay Area nursing home is $98,550 per year for a private room (not including meds or treatment). That $500,000 your mom set aside for long-term care would be gone in five years—and private-pay–only facilities can and will evict someone who converts to Medi-Cal. Once a resident is admitted to a Medi-Cal–certified nursing home, however, she cannot be evicted because of a change from private pay, or Medicare, to Medi-Cal.

And going with a Medi-Cal–certified facility doesn’t have to mean relegating your mom to substandard care.

"Select a nursing home that has a high percentage of residents on private pay," says the Community for Jewish Living’s Rosenthal. "If a nursing home has a majority of residents on public assistance, they will be working with a lower budget, since Medi-Cal reimbursement falls short of the private-pay rate."

Facilities with a higher ratio of residents on private pay have a larger operating budget and are able to provide a better quality of care.

{Stop, Look, Listen}

Once you’ve found a handful of homes that might be right for your mom, tour them.

Geriatric-care consultant Helene Harris suggests visiting during the day, and not announcing your visit beforehand. And, she adds, "Visit the places on your commute route. If you like a place in Oakland, but you work in Walnut Creek and live in Livermore, it’s probably not going to work in the long run."

When you visit, take along a nursing home evaluation checklist, available on the California Advocates for Nursing Home Reform Web site (www.canhr.org), and take your time. The list includes checking staff-to-patient ratios, nursing staff levels, whether residents are given care plans, and if the facility was recently cited for deficiencies. Try to talk with the families of residents and with the residents themselves. Ask staff what they do to keep the residents stimulated (crafts, concerts, trips) and what they are serving for dinner that night. Also ask if the facility is prepared to handle the specific needs of your mom.

"If your dad has Alzheimer’s and tends to wander at night, find out how they would handle that kind of situation," Harris says. "It’s not enough for them to say they watch all the residents carefully. In a large facility, that isn’t realistic; they would need to use wander guards [an electronic monitoring system where a bracelet-type device is attached to a patient’s leg] to ensure your dad didn’t leave the facility."

If possible, look beyond your mom’s current health-care status and plan to tour several different types of facilities. If your mother’s condition changes quickly and she needs to be moved from assisted living to skilled-nursing care, the time you invest now will save you confusion later on.

And finally, look beyond the wallpaper.

"A facility with great ambience is no guarantee of good care," says Etta Maitland, director of the Contra Costa Ombudsman’s Office. "We’ve seen some of the worst care in some very high-priced, well-maintained facilities."

Maitland’s office is the place to go for the straight scoop on how local assisted-living facilities, nursing homes, and residential board-and-care homes fared during their recent inspections, especially with regard to deficiencies or complaints. Reports can also be accessed online at www.canhr.org. Although these inspections can seem obtuse, with a little savvy reading—or the help of someone like a geriatric-care manager or consultant—you can get a pretty good idea of what a place is like.

"There’s a huge difference between a citation for leaving a paper towel on the floor," Maitland explains, "and for issues that put residents’ health in jeopardy."

{Get Past the Guilt}

Susan Reynolds promised her mom she would never place her in a nursing home, only to have no other choice after her mother was diagnosed with Alzheimer’s.

Ask anyone who’s faced the same dilemma, and the feeling that overrides all others is usually guilt. Eldercare experts say guilt is the single hardest emotion caregivers find themselves dealing with on a daily basis.

"Many of my clients feel there is something they could have or should have done to alter the course of their loved one’s decline," says Rosenthal from the Community for Jewish Living. "To feel guilty is normal, but unresolved guilt can compromise a caregiver’s health."

Dealing with your guilt, many eldercare experts warn, should not be put off.

"I like to use the analogy they use on airplanes," consultant Harris says. "Right before take off they tell you that in the event of a disaster, if you’re flying with someone who needs help, to put on your own oxygen mask first. This is the same with caregiving. If you don’t take care of yourself first, how can you be there for anyone else?"

Fortunately, myriad support groups exist in the Bay Area for caregivers. Groups such as the Alzheimer’s Association (www.alz.org) offer disease-specific support groups for families, while local hospitals and companies like Eldercare Services offer support groups for spouses and adult children caring for parents.

{Take a Break}

Sharing your concerns with others may not be enough, however. If caring for your mom is leaving you feeling overwhelmed, you can give yourself a break by utilizing an adult day health center.

These are essentially day-care centers for seniors. You drop your mom off in the morning and while she gets a change in routine, you get a breather. One resource is the Mt. Diablo Center for Adult Day Health Care in Pleasant Hill (925-682-6330).

If you’re planning a vacation, assisted-living facilities and nursing homes can take your mom for a weekend or a week.

Because guilt can be driven by lack of information, you should learn as much as possible about your mom’s medical condition.

Mick Stangrover of Alamo and his wife, Rhonda, managed every aspect of his mother’s care plan. He says being involved helped undermine any feelings of guilt.

"I’ve always been close to my mom," Stangrover says. "[We] visit her several times a week, and it saddens me to see [so] many seniors whose families never visit them. Those are the people who should probably feel guilty."

{Plan, Plan, Plan}

Caring for an aging loved one is not something life prepares you for; few people are born caregivers. But by having a good plan that takes into account your mother’s needs—from health to finances—you can help your mom navigate the golden years successfully. n

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