Elder Care: Planning for the Care of Older Parents
By: AGING ARKANSAS newspaper
As a son or daughter, you often begin providing help to your aging parents in subtle ways. Without thinking twice, you change the light bulbs, mow the lawn or drive a parent to the grocery store or the doctor. You do not think of this help as “caregiving,” you are just helping out, doing what family does.
But if either parent develops a debilitating physical illness, experiences cognitive decline, or simply becomes more and more frail with advancing age, the time may come when your parent’s personal care needs will go beyond day-to-day maintenance assistance and become a major responsibility for you. Welcome to the world of family caregiving.
Planning to Care for Older Parents
Elder caregiving can be broadly defined as the provision of paid or unpaid assistance with the physical, psychosocial and emotional needs of another person. This care may be provided on a part-time or full-time basis depending on the needs of the individual. Caregivers most often are unpaid family members or they can be paid care providers.
Currently millions of working adults are juggling the demands of caring for a chronically-ill or disabled parent, raising a family and managing a career. Working caregivers make many personal sacrifices of their time and energy to devote themselves to caregiving and often suffer stress-related illnesses. Eventually, about 12% quit their jobs to provide care full-time.
Recent studies show that one in every four American families is providing care to an elder or other loved one. Even in our mobile society, with many two-worker or single-parent homes, most elderly family members live close to at least one child on whom they rely for caregiving needs. Many family caregivers first assume their caregiving roles in a time of crisis. Planning ahead can help everyone successfully cope with any crisis, should it arrive.
Resistance is common
Many parents resist planning for their care with their children. There is an implied role-reversal that no one wants to face. An older parent may cling to issues of independence in what may be foolish or unsafe ways, such as continuing to insist on driving when he may be too visually or too cognitively impaired to make good driving decisions. Anger and denial are often present when things must change and affect feelings and actions in unexpected ways.
Gathering information
To best cope with the changes, the family caregiver has needs to meet. These needs include:
- The need to know what the problems are and what can be expected.
- The need to know what can realistically be done about the problems.
- The need to know about all possible community resources and any available programs for assistance.
- The need for sound legal and financial advice.
- The need to know how to care for one’s self in the midst of all other caregiving demands, including the need to know all available support networks.
To understand what you may face in an escalating caregiving situation, gather information from as many of the professionals involved in your parent’s care as possible. Contact doctors, nurses, social workers, therapists and all others who directly care for your parent. They will be excellent sources of practical advice and supply you with much needed information.
Other information sources include local libraries, the Internet and local social service agencies. You might contact the following:
- Area Agency on Aging (see pages 22 to 25 for toll-free numbers)
- Schmieding Center for Senior Education at 501-751-3043
- Reynolds Center on Aging at UAMS at 501-686-6219 (ask to speak to a social worker
- Veterans Administration toll-free at 800-224-8387
- your local county office of the Department of Human Service
These agencies can inform you of any programs or assistance that your parent might qualify for that could reduce the financial burden of caregiving.
Also, it is helpful in assessing your parent’s caregiving needs to consider the following:
- How much caregiving help is needed and when is it needed?
- What are the finances available for paying for care? Any long-term care insurance?
- How much can the family afford to spend on care?
- What community care options exist?
The ElderChoices program is often of great benefit to senior citizens who want to continue living in their homes yet need caregiving assistance. ElderChoices is a Medicaid program designed for persons over 65 with limited income and assets who want to live at home rather than enter a nursing care facility. Services this program covers include adult day care, adult day health care, homemaker services, chore services, home-delivered meals, Personal Emergency Response System (Lifeline), adult foster care and respite care.
Application for this program is made through your county Department of Human Services. To qualify for this program your parent must meet certain income and asset guidelines. She cannot receive more than $1,590 per month in income and cannot have more than $2,000 in assets, excluding the value of a homestead and one car. If you need assistance in applying for ElderChoices, case managers with the Area Agency on Aging can assist you in the application process and will even come to the home to help your parent fill out the necessary paperwork.
ElderChoices participants are also eligible for all other regular Medicaid services such as help paying for prescription medications, doctor and hospital services not covered by Medicare.
Planning for legal changes
Before applying for programs such as ElderChoices, however, it is wise to consult with an attorney who can help you plan for the financial aspects of your parent’s long-term care needs. The ideal time to plan for any legal and financial transitions of authority is far in advance of the time they are needed.
At a minimum, the attorney you or your parents select for assistance in elder care planning should have experience in estate and financial planning, probate and wills. In addition, the attorney should know the ins and outs of Medicaid, Medicare, Social Security, special needs trusts and tax planning. Your parents may have estate issues they have not addressed which would require legal advice and possibly the preparation of a will.
If your parent is facing physical decline due to illness or cognitive decline due to dementia, an elder law attorney can assist you in establishing your legal authority to intervene on your parent’s behalf if needed. Basically, there are two avenues for assuming legal authority for your parent: a durable power of attorney and guardianship.
Durable power of attorney
A durable power of attorney including health care enables your parent to designate another person to manage the finances and health care decisions. To complete a durable power of attorney, your parent must be legally competent at the time the document is signed. Your legal authority to make surrogate decisions for your parent will begin immediately or only when and if your parent becomes mentally incapacitated, depending on how the document is written.
Guardianship
In the case where your parent is already suffering cognitive impairment and is no longer considered mentally competent, you may need to obtain a guardianship to have the full legal authority to make decisions for your parent. To obtain a guardianship, you must petition a court with facts about why your parent can no longer manage his financial or personal affairs. A judge will determine at a hearing what special powers may be granted to a guardian.
Health care wishes
Another legal document of interest to seniors and their caregivers is the Arkansas Declaration. This document allows a person to give advance directives as to how he wishes his medical care to be managed by a doctor or in a hospital in the event of his physical or mental incapacity to inform others of his wishes when medical services are needed. This document does not require an attorney to complete. It can be revoked at any time, as can a power of attorney prior to mental incompetency.
When they can’t live alone
If you should assume your parent’s power of attorney or become her guardian, one of the most difficult decisions you may face is when the patient needs to relocate into an assisted living facility or nursing home.
If your parent’s caregiving needs increase beyond your ability to meet them, a first option is to try hiring a professional in-home caregiver to assist your parent in the home environment and enable your parent to stay at home for as long as possible. Contact the social services agencies above for referrals to both non-profit and for-profit agencies that provide in-home care workers. These agencies contract with you to provide caregivers for a negotiated fee.
Leaving home is a very difficult and heart-wrenching experience for most elders. According to a 1992 Housing Survey conducted by the AARP, the majority of older Americans have lived in the same area for over 30 years and in their same homes for at least 21 years. Because the longing for the security and familiarity of home is so powerful, many family caregivers continue to provide care far beyond their physical and emotional limits before they consider moving them.
When a move is necessary
Moving to an assisted living or nursing care facility may ultimately be the best way to provide your parent with his needed level of care and supervision and the only way to relieve your overwhelming burden as a caregiver.
The following occurrences may signal the need for out-of-home residential care:
- Around-the-clock care or supervision is needed
- Your health as a caregiver is adversely affected
- Your parent has violent outbursts or erratic behavior dangerous to self or others
- Your parent wanders away from home
- Your parent cannot carry out basic activities of daily living such as eating, toileting, bathing, etc.
- Your parent receives no stimulation or needed rehabilitative therapies at home
- You are suffering from exhaustion, stress, fear or isolation
You may find it helpful to meet with other family members to discuss finding the right facility and involve your parent in this discussion when possible. A counselor or support group may also alleviate feelings of guilt or shame often associated with placing a loved one in an out-of-home facility.
The benefits of moving out of the private home environment can include:
- Increased socialization
- Housekeeping and outdoor maintenance services
- Transportation services
- "senior friendly” designed housing such as one level, ramps, wide doorways, emergency call buttons, and levers instead of knobs
Housing options depend on needs
Senior housing options are numerous but may be divided into these categories:
- Independent retirement living
- Assisted living
- Nursing care facilities
Independent retirement housing for seniors is growing. Usually these housing options provide no or very few personal care services but do have minimum age requirements for residents. They may offer common dining and recreational areas, laundry and housekeeping services and on-site staff for emergency needs.
Assisted living facilities offer a special combination of housing and personalized supportive services designed to meet the needs of individuals who need help with activities of daily living. Residences may be free-standing or grouped with other housing options such as independent living or nursing care. Services usually provided include:
- Meals
- Housekeeping and laundry
- Transportation
- Medication management
- 24-hour staff and security
- Social activities
Nursing home facilitiesprovide full-time medical and support staff to meet the needs of the total-care patient. They can be utilized for long-term care or for temporary care needs following hospitalization. Nursing homes may also provide respite care for family caregivers who do keep a family member at home but may need some time off periodically for personal needs.
The cost of senior housing varies from a low of $300 per month for an independent living senior apartment to a high of over $3,500 per month for nursing home placement.
Considerations to keep in mind when looking at senior housing alternatives include:
- Your family’s financial resources
- Your parent’s lifestyle preferences
- Your parent’s needs over the short and long term
- The ability of the senior housing community to meet your parent’s needs
Ms. Simpson is the coordinator of Elder Care Programs for The Schmieding Center for Senior Education Springdale, AR. For more information, call 888-866-8991 or 501-751-3043.
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1-866-651-CARE (1-866-651-2273)
©2010 Arkansas Association of Area Agencies on Aging
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