The important role of family caregivers. More than 50 million people in the U.S. provide care for a chronically ill, disabled or aged family member each year. Some “tend out” to a relative; others give up their homes to move to a relative’s home; and others bring a relative into a guest room or in-law apartment. Consider the following survey data from 2000:
- Family caregivers provided the overwhelming majority of long term care in the U.S.: about 80%.
- Over three-quarters of adults in the community in need of long term care relied exclusively on family and friends for care; only 8% use paid help only.
- 17% of family caregivers provided 40 hours of care a week or more.
- The estimated value of “free” services provided by these caregivers was $306 billion a year ($1.8 billion in Maine) — almost twice the amount spent on paid home care and nursing home care combined.
- 1.4 million children under age 18 provided care to an adult relative.
- 30% of caregivers are over age 65, many with their own health problems.
- More than half of family caregivers work worked outside the home while caring for a family member.
- The typical working family caregiver lost $109 per day in wages and health benefits as the result of care giving responsibilities.
(Source: National Family Caregivers Association, www.nfcacares.org.)
Typical family caregivers. Some typical family caregivers I have seen in my practice:
- Alice, a single teacher in her 50’s, whose father has dementia, takes early retirement with a reduced pension to live with and care for him full time.
- Bertha and Gladys, maiden ladies in their 70’s, live together in the family home. Bertha cares for Gladys, who has Parkinson’s and receives MaineCare. Bertha worries she will lose the home when Gladys dies.
- John, a single father, leaves work frequently to drive his mother to doctor’s appointments, and worries about losing his job. He’d like to hire a neighbor to help out, but can’t make sense of the payroll requirements.
- Frances, married to Albert for 40 years, cares for him at home with the help of her two children. Albert will soon need nursing home care, and Frances worries that the cost will take all their savings.
Answers and solutions for family caregivers. Caregivers face additional stress when encountering legal and financial issues. There are some answers and some solutions for them, such as:
- In the case of a married couple, when one is in a nursing home or assisted living, the spouse at home need not spend down all savings to pay for care, nor must she give up the home.
- With proper advice, a married couple with one enrolled in MaineCare have opportunities to protect their estate for their heirs.
- Hiring paid caregivers can be made easier with the help of an accountant or payroll service to handle tax withholding and other requirements.
- Investment in income-producing property can be a wise move for some people, helping with MaineCare eligibility and helping to minimize the impact on their finances.
- Under certain circumstances, an older person who wants to give his home to a live-in caregiver child or to a disabled child may, with proper legal advice, do so without risking MaineCare eligibility.
- Older siblings who own and live in a home together can ensure that the survivor is able to keep the home upon the death of the first of them.
- Maine’s “Long Term Care Partnership Program,” now in the development stage, provides incentives to people who purchase long term care insurance by enabling them to preserve assets for their heirs if they later receive Maine Care.
- With a personal care contract properly drafted by an attorney, an older person may pay a relative or friend to provide care, without risking MaineCare eligibility.
- A caregiver who takes time off of work to help an ill relative may be protected under the state and federal Family Leave Act.
- A caregiver and older person who want to collaborate financially to build an in-law apartment should obtain advice to minimize tax consequences and ensure MaineCare eligibility later on.
- Middle income elderly and disabled people seeking care at home may meet MaineCare income guidelines and should not hesitate to apply for help to supplement the help of a family member.
Caregivers in these situations should obtain professional advice. “Self-help” is usually not a good idea.
Helpful links for family caregivers:
Spectrum Generations’ Family Caregiver Support program. Download their publication, “Connections: A Guide for Family Caregivers in Maine”: http://www.seniorspectrum.com/Services/Family_Caregiving.asp
Services available through Maine’s five area agencies on aging under the National Family Caregiver Support Program: http://www.maine.gov/dhhs/oes/fcsp.htm
Information on respite/alternative care and caregivers’ support groups: http://www.maine.gov/dhhs/oes/caregivers.htm