How many times have you gotten into a voice mail system and felt exasperated trying to get to a human voice? Probably a few times a day you enter into this impersonal, high-tech maze of options. Eventually you feel comforted when you get to a real person. My research on eldercare was a lot like this maze, with more options than I could understand. In my parents’ youth they didn’t have voice mail or email and millions of websites to gather information from. Technological progress has value, but in the transition from independent living to needing assistance, a hand to hold, a voice to listen, and maybe some tea and crumpets are invaluable. Thus, in this article, I am creating a simple, user-friendly guide for baby boomers on basic eldercare options.
Friends and extended family who have used senior services are the best starting resource. Since I have been home I have made contact with many friends taking care of parents. We have listened to each other’s stories and exchanged knowledge about resources. A support network has grown which enables us to give more to our parents. Don’t be afraid to talk to those more knowledgeable. Everybody likes to offer advice and feel helpful. Hearing others’ success stories allows you to “keep truckin’.”
Establishing Compassionate Connections to Aging Parents
When searching for the right living arrangement for your parent(s), remember the delicacy of the situation and that how you accomplish the goal is more important than the goal itself. For example, one of my friend’s fathers is beginning to have difficulty with driving. Sometimes he is lucid and driving safely. At other times his lucidity dwindles and he shouldn’t be on the road. My friend wants to maintain his father’s dignity while getting to the goal of taking away driving privileges.
One of the smoothest ways to maintain a senior’s dignity is to listen to their ideas and feelings. Thus, before making a decision about what type of assistance to give an aging parent, listen to what they say. When I taught pre-kindergarten and the kids would get mad at each other, my strategy was to allow them to work the problem out, letting one child talk while the other listened. Then the second child got a turn. After each one had expressed their point of view, the charged emotions had vanished. That’s when I asked the children for their solution. At this point they were able to find a resolution that was suitable to both of their needs. The key here was that both parties felt understood.
Listening creates a common stream of communication that allows words to be heard and feelings to be nourished. In the long run, when we listen and ask questions we have a much greater influence on people than if we offer our answers. Just like a two-year-old who asserts her independence, our parents want to cling to theirs. Making decisions for them may seem the most efficient way to operate, but the cost to their self-esteem may be quite high. They are more likely to respond favorably to new ideas if we ask for their opinions first. Most importantly, you may learn something new that alters your perspective of their needs.
In her book Another Country, Mary Pipher states, “As much as possible, elders need to make decisions about their own lives. . . . The common response to loss of choices is depression.” By listening and asking questions we can work together towards a common goal: the highest quality of living possible for those we love.
Included in the listening scenario is the need for reminiscing. This is a very important tool for transitioning seniors. Reminiscing gives the older person a sense of identity, achievement, and pleasure. It can help them cope with aging stresses and allow them to deal with emotions such as grief. Common grounds for communication can be opened up between the caregiver and the elder. A bridge between past and present can be built upon this type of reflecting. Finally, cues about the person’s present behavior can be seen through the eyes of past events.
Stress levels may soar even when we feel we are listening and doing our best to accommodate our parents’ needs. Remember: when emotions soar, judgment is usually impaired. Try to take a walk or some deep breaths. Put off the decision until the emotional fire dies down. Go to the Dave Barry website or try to find some humor in the situation. Listed below are useful tips for compassionate caring of aging parents:
Ten Golden Tips on Caring for Aging Parents
• Follow your heart.
• Don’t be afraid to show physical and verbal affection. Touch, hugs, holding hands, and saying “I love you” all sooth anxious souls.
• Be open to solutions that stretch your growth.
• Respect your elders. Learn from their wisdom.
• See the job. Do the job. Stay out of the misery.
• Speak the sweet truth. When improvement in another is necessary, uplift first, suggest the change, uplift.
• Rest, humor, exercise, and good food reduce stress levels. Yoga and meditation provide great relief.
• Be fully in the present moment.
• When clouds come, remember the sun will shine again.
• Of course, the golden rule works in all situations. Ask yourself, “How would I want to be treated in this situation?”
Once the line of communication with your parents is strong, then a conversation can begin about what type of services they need. In some cases, parents may have made a reasonable decision on the type of care needed. In cases where clarity of needs is lacking, questions about your parents’ mental and physical health and financial resources must be addressed. If you are unsure of what questions to ask, assessment surveys are available.
The American Association of Retired People (AARP) created an assessment profile titled “Helping Older Parents: Assessing the Situation” (see Resources). Questions about physical and mental health, behaviors, medications, daily living activities, finances, etc., are included. Their bottom line is, “Talk openly with your parents about their living situation, and identify assistance should they need it.” When Parents Can’t Live Alone, by Ellen Rubenson, also has an extensive assessment survey.
If you want a professional to help with the assessment, contact your local or state Department of Aging. Often they will send a case manager to your home to make the assessment. After surveying your situation the case manager makes referrals to the appropriate service agencies. Officials in Iowa and New York said the case manager can be contacted for questions and problems until your parents are settled. There is a national help line called “Eldercare Locator” (800-677-1116) that provides information on the nearest area government agency on aging.
In Iowa there are 13 area agencies that do direct service work for the aging. They will provide case managers to those who are unsure of their needs. The Department of Elder Affairs in Des Moines is the conduit to these agencies. Dr. Judy Conlint, Director, said these area agencies are not well known, but they are the place to begin. Each area agency takes care of one or more counties. By calling (800) 532-3213 you can get help locating the closest office to you. Based on financial assessment, some services may have a fee, while others are free. You pay as you can afford. “One basic rule,” said Conlint, “is that anyone 60 years or older cannot be denied these government services.”
Conlint also explained that the majority of Iowa seniors 75 and older live on less than $25,000. To support them the Robert Wood Johnson Coming Home Grant will be used to build affordable assisted living in rural and urban areas.
Likewise, The Senior Living Trust, an intergovernmental transfer of funds, will allocate $300 million over the next four years to convert thousands of nursing home beds into assisted living facilities, support in-home assistance, and create a trust fund to service in-home care for the 30 percent increase of people over 60 that will happen by the year 2020. For the majority of elders who prefer to live at home, this money will allow them to get support in familiar surroundings.
Another route for assessment help is to hire a Geriatric Case Manager (GCM). This person is usually a combination of a social worker, nurse, and financial advisor. Unlike state agencies that usually supply free assessments, fees start at $150 to $500. Their greatest asset is that they can represent the adult children who live too far away to manage their parents’ or relatives’ care. GCMs should have extensive knowledge of community resources and government agencies. Contact the National Association of Private Geriatric Care Managers: (520) 881-8008, www.caremanager.org.
AARP also offers Life Answers Consultation. For $75 a case manager will assess your needs and give three to five referrals. However, they won’t come to your home like a private or state-funded case manager.
When using a case manger, Rubenson recommends that an extended family member or friend be present at the interview, since elevated stress levels may interfere with recalling all that transpired. A more objective party can take notes and offer help in sorting out new information.
Once the assessment is made, the type of services needed will become apparent. However, if parents decide to go to an assisted-living facility one day, the next day they may say they don’t need it. Most likely, fear has crept in and denial measures are in place. Leaving a familiar area is very difficult. Ask yourself, what would I feel in this situation? Be as patient as possible. Remember when you couldn’t ride a bike and your mom and dad spent hours helping you find the perfect balance? Allowing your parents to find their psychological balance will be a blessing to all of you.
Eldercare Home Services and Alternative Housing Options
There are numerous services and living arrangements for the elderly. Hopefully, with an assessment and open discussion, the best scenario for daily living will become apparent. The Resource sidebar lists websites, books, and periodicals that go into more detail on these services. I have given a surface view of possibilities.
Most elderly people want to stay near friends, family, and familiar surroundings. Often when parents initially need assistance, one or more children attend to their needs. If you are this person, be sure to make routine visits and regular phone calls. Other supplementary services may be available on a short- or long-term basis, such as physical therapy, home health aide, homebound library, home repair visitation nurse, and meals on wheels. If a case manager is involved, he or she can refer you to the appropriate agency for services.
Make your parents’ home senior-friendly by installing necessary safety features, such safety rails in the bathroom or a stair lift to reduce falls on steep steps.
Another scenario of homecare is the parent moving in with his or her children. A growing statistic shows that one out of seven people over the age of 65 live with a son or daughter. For those 85 and older, that number is much higher. Outside support services as mentioned above may be sought. Check with a local agency for available resources.
Homecare can be both enjoyable and stressful. Remember the tips. A friend who spent 13 years caring for her parents explains, “Older parents need to know they are loved and not alone in the world. Their intelligence must be respected. They should be enjoyed. Your job is to give to them. Find happiness in the giving. Don’t do everything yourself. Get help for parents so you can do things from time to time. Play beautiful music for them. Tell them about your day even if they can’t speak. Don’t get upset with their shortcomings. Do your best and never doubt yourself.”
Adult Day Care
Adult day-care centers provide programs in a structured setting for older adults. Most elders at these centers require some form of assistance. These centers give older people relief from isolation and offer social and recreational activities. Caregivers can receive respite from daily pressures of caregiving. Be sure the staff includes a nurse or nurse practitioner.
Retirement and Assisted Living
A retirement community is for independent adults usually over the age of 62. These elders are in relatively good health, need little assistance, and have financial security. Various social and recreational activities are offered. Services offered may include community meals, housekeeping, transportation, and clinics.
Assisted living facilities are normally for people over 65 who are no longer completely independent. They provide 24-hour hour supervision, as needed, in areas such as personal care, medication management, and basic nursing care. Like retirement communities, they also offer recreational and social activities as well as community meals. Dr.Conlint says her office certifies assisted living facilities and her staff can help with prices, type of clients, and what questions to ask at each facility.
Costs of retirement communities and assisted living facilities vary. Be sure to read any contracts very carefully before signing. The fine print may reveal additional costs. These accommodations often have wait lists of up to two years to get in. The Eldercare Locator provides help with assisted living locations.
Most people think of nursing homes as a final destination for older incapacitated people. However, statistics show that only 5 percent of people 65 or older live in nursing homes. Only one-tenth of these elders stay three years or more. Most older adults stay for short periods of time after surgery or to receive temporary nursing care or rehabilitative therapies. There are basically three types of nursing homes offering varying degrees of medical care. For an extensive review of nursing homes see When Parents Can’t Live Alone.
Always be sure to evaluate the staff in any eldercare facilities. To get a feel for how the site operates, make an unannounced visit.
There are volumes on eldercare law and coverage. Elderlaw covers areas such as power of attorney, living wills, Medicare and Medicaid laws, pensions, veterans benefits, social security, and long-term care insurance. It is advisable to have legal representation when signing a contract, such as with an assisted-living facility.
Area agencies can help you locate an eldercare attorney when necessary. The Eldercare Locator will assist you in finding attorneys nationally. AARP also has a legal department. The American Bar Association has an online reference called “National Handbook on Laws and Program Affecting Senior Citizens.” It covers a wide range of legal issues and is easy to understand.
Long-term Care Insurance
This type of insurance is normally purchased by middle-class Americans who don’t want to drain their assets on long-term care. Medicaid supports indigent people who have long-term needs. Wealthy elders can pay for private help. Middle class elders have to draw upon their pension and savings to pay for extended care.
“Buying this insurance is the most emotional purchase my clients make,” says Cynthia Wright, an independent insurance specialist in New York. She mentions that nobody wants to think about needing long-term care, but with medical breakthroughs, people are living longer and the potential to drain one’s assets is greater.
LTC insurance provides a daily allocation of money to be used after the age of 60 for a variety of long-term care necessities. Coverage may be used for in-home services such as physical therapy or nursing care, or to help cover the cost of assisted living or nursing home situations. Wright recommends buying LTC around age 50 to keep the cost of premiums low. Be sure to use a licensed insurance agent. The Department of Aging or your state insurance commissioner can help locate an agent.
According to the most recent National Long Term Care Survey, more than seven million people are informal caregivers, providing unpaid help to older persons in their home or community. These caregivers include spouses, adult children, and other relatives and friends. If these caregivers had to be replaced by paid home-care staff, the estimated cost would be $45-75 billion per year.
With these figures in mind, the Administration on Aging created the National Family Caregiver Support Program (NFCSP), funded with $125 million. Most states have been allocated some part of this money. The program has been created to offer five basic services for family caregivers: information on services, assistance to caregivers in accessing services, counseling, respite care, and supplemental services. The significance of this program is that it recognizes the importance of the family caregiver. If you have been unable to afford a rest from caregiving or the cost of counseling, contact your local department of aging and seek out these funds.
Taking care of ourselves while helping our parents is essential. A practical guide to dealing with the challenges of caregiving is Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, by Claire Berman.
When my father was in the hospital, I kept a morning routine of walking and writing. This time alone allowed me to gather my strength and to feel that I had a little of my own life while helping my parents. I also tried to eat lunch before hunger clouded my ability to think straight. Getting rest, exercising, and eating well were necessary ingredients to being an effective caregiver.
Watch for caregiver burnout. Contact a family member, friend, or community agency if you need assistance or a respite period. Especially in this sandwich generation, where we care for our parents and our children without the extended family for support, life can get very stressful. Maybe another assessment is necessary for the joy of caregiving to remain.
The Blessings of Caring for Our Loved Ones
In quizzing friends about what they have gained by taking care of their parents, the answers were as follows: humility, patience, flexibility, quality time with them, and growth of heart. One friend said that his parents supported him through hard times in his youth and now he can repay them.
As Mary Pipher states, “Those last years can be difficult, but also redemptive. As we care for our parents, we teach our children to care for us. As we see our parents age we learn to age with courage and dignity. If the years are handled well, the old and young can help each other grow.”
I could never have imagined the growth I experienced while taking care of my dad. As time moves along, I look forward to continued closeness with my parents and being able to provide compassionate support in their senior years.
Read Margo Baum’s beautiful account of taking care of her father after he suffered cardiac arrest.
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