Taken from the January/February 2015 issue of the Women's Health Activist Newsletter.

My partner, an only child, flew out to St. Louis frequently to help her parents cope with the realities of ALS’ unmitigated harshness. The ALS Association and Muscular Dystrophy Association provided valuable support groups, home health care, hospice care, and durable medical equipment to buffer the journey. In June 2014, my partner’s mother died peacefully in the home she had moved into 45 years earlier, thanks to community supports and the compassionate care of her family.

More and more of us are having similar experiences as the U.S. population ages. The youngest Baby Boomers turned 50 last year — the oldest are almost 70 — and Boomers now account for about one-quarter of the nation’s population.¹ By 2030, people aged 65 and older will make up 19 percent of the population.² The aging population increases the demand for family caregivers, most of whom are women.³

Caregiving can be very rewarding and much appreciated. Yet, caregivers who are unprepared for their role, or lack support, often pay a huge physical and emotional toll, which is compounded by the absence of proper planning. To meet the needs of our aging population, caregivers have to be prepared financially, legally, and emotionally for this role.

Advance Directives & Protective Arrangements

One of the most stressful parts of caregiving is the need to make health care decisions for a loved one while under pressure and without guidance from the vulnerable adult (it is particularly hard when your loved one lacks the ability to make decisions and/or communicate). Being proactive and creating financial and health care powers of attorney well in advance of any illness can reduce caregiver stress. The documents you’ll need are:

• Financial power of attorney: prevents financial abuse and exploitation by enabling trusted relatives or friends to make any needed financial decisions. The financial power of attorney can be durable (effective from the moment it is signed) or springing (effective only upon occurrence of a specific event, typically lack of ability to make and/or communicate financial decisions oneself). Financial power of attorney also minimizes the risk a senior will fail to pay rent or mortgage, utilities, and/or taxes, and enables the person with power of attorney to step in for court matters, as needed.
• Health care power of attorney: appoints a substitute decision-maker for an individual who lacks the ability to communicate orally or in writing, and/or understand the nature and consequences of health care decisions. Similar to a financial power of attorney, a health care power of attorney, can be designated as either durable or springing.
• Living will: clarifies what, if any, medical intervention(s) a person wants when their medical condition is terminal, or they are in a permanent vegetative state or coma. This includes artificial respiration, feeding or hydration, blood transfusion, cardiopulmonary resuscitation, chemotherapy, dialysis, and/or medication that brings physical comfort but hastens death.
• Will: directs a person (the executor) to manage the individuals’ estate and specifies how assets and property should be distributed.
• Trusts: financial arrangements that protect assets by allowing a third party (the trustee) to hold assets for a beneficiary; families can also create a trust to protect assets from Medicaid liens.
• Burial arrangements: making pre-paid burial arrangements (or including burial wishes in one’s will) is critical to preventing survivors from having to make arrangements during the emotionally difficult time of loss. But, beware of pre-paid burial scams and investigate prospective providers thoroughly.

Being prepared helps caregivers make weighty treatment decisions; removes the stress of wondering if caregivers are following their loved one’s wishes; and can help prevent disputes from arising. The danger of not preparing in advance of incapacity is that caregivers then have to deal with the additional stress of filing a guardianship (for health care matters) and/or conservatorship (for financial matters). The alternative — the risk that estranged family members, doctors, or even judges, who do not know the person well will make these decisions — is untenable. State Bar Associations can direct residents to legal services, including organizations offering free services to low-income clients.

Caregiver Resources

Family caregivers are often new to this role and may quickly become overwhelmed. Fortunately, there are many places to find support and useful resources, including AARP’s Caregiving Resource Center, which is a good place to identify next steps and local assistance.⁴ The Center offers several guides and resource lists to help caregivers manage financial, physical, and emotional challenges.⁵ It also has resources to help family members talk with their loved ones about their wishes and planning for the future.

There are a host of public programs focused on helping older adults and individuals with disabilities, which also assist family caregivers, too. Sadly, many people miss out on helpful services because they do not know about benefits they’re eligible for, such as home health aide resources provided to Medicaid and Medicare beneficiaries.⁶ Websites like the National Council on Aging’s Benefitscheckup.org, and Social Security’s website (www.SSA.gov) help identify benefits (i.e., food, housing, nutrition, health care, etc.) that can help support individuals and relieve caregiver stress.

Housing is a significant stressor for older people; as income shrinks in retirement, housing affordability is a real challenge — particularly for medically vulnerable adults. In response, many states provide tax benefits for housing costs, as well as Federally subsidized, affordable housing for seniors. It is important to know that Federal laws prohibit housing discrimination based on disability and/or handicap.⁷ Local human rights laws also protect individuals with disabilities from discrimination in both housing and the provision of other services.

Community organizations — like your Area Agency on Aging, local non-profits, and local government programs — can help caregivers identify needed services for themselves and their loved ones (like respite care and health services), programs to keep seniors connected with their community (like adult education and day care programs) and legal assistance (to help with accessibility and affordability).

Each state has a Long-Term Care Ombudsman that monitors the quality of care in nursing homes, assisted living facilities and, sometimes, of home health aides. They are important allies to ensure your loved one receives proper care. Many associations provide valuable, illness-specific resources for caregivers (like durable medical equipment, respite care, visiting nurses, and hospice referrals). Examples include the ALS Association, Alzheimer’s Association, American Heart Association, American Cancer Society, and MS Society.

Most important is self-care, which is critical to caring for others. Thankfully, an incredible network of caregiver supports exists in this country. Eldercare Locator (www.eldercare.gov) helps link caregivers with local resources (including Adult Day Care, Long-term Care, health insurance, housing, and transportation) that can help relieve caregivers’ burdens.

Conclusion

Caregiving is a challenging experience, both emotionally and physically. The key is to have difficult conversations with your loved one early, so you can be prepared; get the legal, financial, and emotional supports lined up well before any emergency occurs; and identify and use available supports and benefits. The most important message is to avoid being proud — take advantage of available resources, and take proper care of yourself!

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Jennifer L. Berger supervises the eviction prevention team at AARP Legal Counsel for the Elderly. She helps elders age in place by enhancing their housing’s affordability, accessibility, and habitability, and helps family caregivers obtain protective arrangements. She has degrees in social work and law from S.U.N.Y. Buffalo. She  dedicates this article to her partner’s mother, Mary Ann Lang, and her devoted caregivers, Joseph and Karen Lang.

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References

1. “Baby Boomers” were born between 1946 and 1964. U.S. Census, “U.S. Census Bureau Projections Show a Slower Growing, Older, More Diverse Nation a Half Century from Now,” Washington, DC: US Census, 2012; available online at: http://www.census.gov/newsroom/releases/archives/population/cb12-243.html.

2. U.S. Administration on Aging (AoA), “Aging Statistics,” Washington, DC: Department of Health and Human Services, 2013. Available online at: http://www.aoa.acl.gov/Aging_Statistics/index.aspx

3. National Alliance for Caregiving (NAC)/AARP, Caregiving in the U.S., Washington, DC: NAC/AARP, 2004; available online at: http://assets.aarp.org/rgcenter/il/us_caregiving_1.pdf.

4. See http://www.aarp.org/home-family/caregiving/?intcmp=HP-LN-CRGVNG-CRC (viewed 8/13/2014). Caregivers can sign up for the AARP Advocates e-newsletter at: http://action.aarp.org/site/PageServer?pagename=Get_Involved&intcmp=HP-LN-sec9-pos1 and connect with their local AARP State Office (http://www.aarp.org/states/AARP) and get telephone assistance by calling 1-877-333-5885 (1-888-971-2013 in Spanish) Monday-Friday: 7 a.m.-11 p.m. ET, Saturday 9 a.m.-5 p.m. ET.

5. “Prepare to Care: A Planning Guide for Families”, AARP Caregiving Resource Center (2012); available at: http://www.aarp.org/content/dam/aarp/home-and-family/caregiving/2012-10/prepare-to-care-lores.pdf

6. See http://www.medicare.gov/Pubs/pdf/10969.pdf. (viewed 8/13/2014).

7. Fair Housing Amendment Act of 1988, 42 U.S.C. § 3604(f)(1)-(2); Title III of the Americans with Disabilities Act (ADA) 42 U.S.C. § 12182(a).