A recent survey by AARP found that nearly 70 percent of adult children have not talked to their parents about issues related to aging. Some children avoid this most intimate of conversations because they believe their parents don't want to talk. Others think they know what their parents want. And some simply don't want to face the very real truth that if you are lucky enough to have parents who live well into their senior years, chances are good that disease, injury, frailty, even loneliness, will affect a parent's well-being.
While it's clear that having a conversation with aging parents is important, there is no blueprint on how to do it well. The key is to be flexible, says Mary Anne Ehlert, founder of Chicago-based Protected Tomorrows, an advocacy firm for families with special needs. She has found that one of the best ways to get to the point is to talk about your parents' personal values and what they would do if faced with a situation in which people they loved could no longer care for themselves. "Ask your parents for advice; seek their wisdom in helping you help them", Ehlert says.
It's also important for adults to be honest about what they are prepared to do for their parents. As parents age and become frail, many will need help with personal hygiene. It's these kinds of issues that can make the most devoted child balk says Monika White, president-elect of the National Association of Professional Geriatric Care Managers. "Adult children need to acknowledge their own limitations and then be prepared to make some type of arrangement for the things they simply can't do." With Alzheimer's, only people who have this in their family could possibly understand what they have gone through, there is no positive end.
Some 20 million boomers are caring for their families while trying to provide care for aging parents. Few know what they are getting into, says Donna Schempp, program director of the Family Caregiver Alliance, a San Francisco advocacy group. "Caregiving simply happens", says Schempp. "No one really chooses their caregiver. It's almost always a default decision based on who is available." Coping with issues like incontinence or periods of screaming can undo even family members who vowed never to put their parent in a nursing home.
Even with the very best of intentions and resources, families constantly struggle.
Support groups can help, but many caregivers say they don't have the time or energy to participate. They're balancing their parents' needs with the ongoing demands of work and, often, raising their own kids. Many report significant symptoms of depression as well as frequent anxiety, frustration and anger, says Stanford psychologist Dolores Gallagher-Thompson, who studies caregivers.
Taking care of a parent can be tough. But there are some extraordinary resources available. The smartest approach is to plan ahead, recognizing that someday you will be a caregiver or someone will be caring for you. That approach often lead adult children into political activism, in order to improve funding for research and tax reliefs for carers.
One strategy is to schedule time to talk about a specific subject, such as wills or living arrangements.
The upside of having a conversation about the future is that adult children may find they get to know their parents on a deeper level. "I never knew my mom was lonely," says Hrapko, whose mother is thriving and making new friends in an assisted-living facility near her daughter's home in Chardon, Ohio. "How I wish we would have talked about the hard stuff sooner." When it comes to aging parents and their children, sometimes a good talk is the best medicine.
Once the primary talks have been engaged, more practical details must be surveyed. Some basic steps must be taken methodically.
There will come a time when an adult child must make decisions regarding a parent's health care. To ease the way, there are two legal documents that experts say are vital. The first is a health-care proxy. This document, also called a health-care power of attorney, appoints a specific person to make all decisions regarding health care and end-of-life care, including refusal of treatment. The health-care proxy goes into effect when the attending physician determines that an individual is no longer able to make decisions on his or her own.
The second critical document is an advance directive, also known as a living will, which allows the person to state what kind of medical care he wants and which life-support procedures he doesn't want.
It's very important for parents to talk about their spiritual beliefs and values, which may shape their decisions about the procedures they may or may not want at the end of life, says Brandt. One caveat : the laws governing advance directives vary from state to state, so it is important that they make sure their advance directives are state-specific.
Another type of advance directive is the Do Not Resuscitate order, or the DNR. Unlike the living will or health-care proxy documents, the patient does not prepare this document. The DNR is a request not to have cardiopulmonary resuscitation if the heart or breathing stops. Though it may be requested by a patient or by a health-care proxy, it is valid only if it is signed by a doctor. A DNR order will then be put into your medical chart. DNRs are accepted in all states.
Talking to parents about their finances can be extraordinarily difficult, but not talking about finances can be worse, especially if a parent's health starts to decline rapidly. In the past, estate planning involved little more than a will. Now, due to better medical care, people are living longer. That's why estate planning must cover long-term incapacity, including out-of-pocket expenses for assisted living, nursing homes (which, contrary to popular belief, Medicare does not cover long term), in-home care and other expenses related to aging.
Legal Issues At a minimum, a caregiver should have a document called durable power of attorney, which gives you authority to make legal decisions when your parent becomes incapacitated or incompetent. These legal decisions can involve bank accounts, real estate and other personal matters.
Also, make sure your parents have wills. This simple document names a person who will manage the estate upon your parents' deaths and the beneficiaries of the estate. If a person dies without a will in place, state "intestacy" statutes will determine who gets the property. Keep all legal documents, including the deed to the house, life-insurance policies and other important papers, in one place, such as a safe-deposit box. If your parents have a safe-deposit box, make sure that you are a signer.
Ask any older person where he or she wants to live and chances are good they'll say they want to stay in their own homes. But where Mom and Dad eventually live will more than likely be determined by their health, available resources and caregiver's needs. If a parent is healthy and mobile, one option is to make an existing home safer by reducing fall risks.
When a parent wants to leave a home and is still healthy, there are many options available, including independent senior communities, continuing-care retirement communities and assisted-living facilities. Independent senior communities usually feature private apartments with senior-friendly designs. Some may offer 24-hour emergency-call services, group outings, social activities and other amenities.
When someone is too sick to live on his own and requires round-the-clock care or is
recovering from an illness or operation, a nursing home is generally the best choice. These facilities are state licensed, providing nursing and personal care and needed medical services. Like other facilities, nursing homes do offer social activities to residents.
Assisted-living facilities cost on average about $32,000 per year; a semiprivate room in a nursing home runs about $65,000 per year. While Medicare will pay for nursing-home services for a specified period of time for people recovering from surgery or in need of rehabilitation, it does not cover long-term-care expenses. Nor does Medicare pay for assisted living or any of the other senior housing options. Your best bet, again, is to plan ahead.
Sometimes a move to an assisted-living facility can help elders socialize. "The decision to move from an existing home is really tough," says Minnix. "Within reason, the wishes of the parent should come first. If a parent wants to stay in the home, do all you can to help them stay there." Internet resources provide a wealth of information on how to choose the best facility or how to help parents make a decision to stay or leave their homes. To help assess your parents' needs, your first stop should be your local Area Agency on Aging.
Providing care for an aging parent can create friction among family members. Some siblings may be in denial about a parent's condition; others may not want to be involved in caregiving. "There is no easy way to straighten out years of problems among siblings," says the Family Caregiver Alliance's Schempp. Sibling relationships can also fray – especially when one son or daughter lives nearby and others are far away. Often one son or daughter shoulders the heaviest burden, and that breeds resentment. The strain of nursing an ailing parent often exacerbates long-simmering family tensions. Sons or daughters who never got along with their parents are the most likely to feel trapped by their obligations.
Financial issues can aggravate an already stressful situation. In almost every family, money disputes eventually surface. Siblings frequently disagree over how a parent's assets should be used. When a mother's or father's bank account runs low, the next generation has to kick in, and not everyone is equally willing or able. Hence the interest of planning as much as possible with the most concerned : the parent.
"Sometimes when a parent requires care it can bring out the best in people. Sometimes it can bring out the worst." If you're having trouble in the sibling-rivalry department, try a family meeting with an outside facilitator, such as a close family friend, attorney, social worker or clergy member. This mediator can make sure that all siblings get their say.
One of the most undervalued roles that siblings can play is providing respite care to the primary caregiver, helping with shopping, transportation, doctor's visits and other tasks. According to the Family Caregiver Alliance, baby boomers caring for aging parents while juggling work and their own family responsibilities are at increased risk for depression and chronic illness and an overall decline in quality of life. Ask for help from siblings or local resources, such as senior centers and the local Area Agency on Aging. Support groups can help, too. Caregivers are more likely to neglect their own medical care and show high levels of stress hormones and diminished immune response – all of which lead to an increased risk of heart disease and cancer.
There is a wealth of resources to help caregivers with information on legal, medical, financial and support issues.
For caregivers, the most effective therapy is an ancient one. "Be patient", says Mashy Modjdehi, 52, of Plano, Texas, who is caring for her 85-year-old mother.