![Author Susan Singer, the founder and the coordinator of the Caring Community. JIM SNODGRASS PHOTO Susan Singer](https://dioceseofnewark.org/sites/default/files/styles/node_hero_image/public/images/SusanSinger.jpg?itok=x-E2ECai)
Throughout the United States, there exists:
“an invisible, isolated army, carrying out increasingly complicated tasks and experiencing challenges and frustrations without adequate recognition, support, or guidance, and at great personal cost.” [1]
The members of that army are our seniors’ family caregivers. Their contributions to aging loved ones, as well as to society as a whole, are invaluable. Where can they find much needed care for themselves?
The Challenges
Consider Sarah’s story. [2] When Sarah’s father, John, was diagnosed with Parkinson’s disease two years ago, Sarah was determined to care for him in her home. She has done just that. Although she has a full-time job, Sarah, at age 57, has single-handedly taken on the role of family caregiver.
Sarah loves her father. In the past two years, however, John’s symptoms have progressed. He has now been diagnosed with mild dementia and hypertension, and Sarah’s caregiving job has mushroomed.
Caught up in using her lunch hour to check on John, dipping into her own sick days to take John to his doctors, playing the role of health advocate, handling John’s Medicare claims and bank accounts, preparing meals that meet John’s special dietary needs, attending to his medication schedule, and coping with his mood swings, Sarah moves on a treadmill, from work at her office to work at home, as one of America’s millions of unpaid family caregivers.
Not surprisingly, the physical and emotional toll on Sarah is enormous. Well meaning advice columns for caregivers often remind them confidently: “Remember, you are not alone”, but Sarah feels alone, indeed.
Ironically, although our “Sarah” feels alone, her story mirrors the experience of a staggering number of fellow caregivers. Statistical descriptions of that army are stunning. For example, as of 2015:
- 34.2 million people in the U.S. provided care for persons 50+
- The majority of informal caregivers work full or part-time.
- 60% of working caregivers report suffering work-related difficulties due to their dual work/caregiving roles
- 21% of caregivers report that caregiving has caused their physical health to deteriorate. The percentage is higher (32%) for those providing care for someone with Alzheimer’s or dementia.
- 50% of those caring for someone with Alzheimer’s or dementia report high level emotional stress as a result of caregiving [3]
Some Resources
There is no panacea for the difficulties which Sarah and other family caregivers confront, but a variety of resources are there to help. Among them, two stand out for supporting a caregiver’s emotional wellbeing: respite care and caregiver support groups.
Respite Care
“Respite” literally means a period of rest or relief. In the context of family caregiving, respite may mean a few hours away from the house once a day, a week, or a month, or it could mean a more extended break. Practical guides and empirical research suggest that some form of regular, pre-scheduled respite is key to reducing caregiver stress.
Before selecting a private pay provider, it makes sense to explore what government subsidized options are available. Here are several open to New Jersey residents:
The New Jersey Statewide Respite Support Program: This program offers help for uncompensated home caregivers of adults who are frail or functionally impaired. Services consuming up to 21 days per year can include home care, companion services, adult day care, or a short stay in a licensed medical care facility. “Days” can be split into shorter, several hour periods for regularly recurring breaks, or can be consolidated for a true vacation.
The program is means tested, but does not demand penury. The person needing care may have liquid assets not exceeding $40,000 for a single person, or $60,000 for a married couple, and income not exceeding three times supplemental security income. That income limit translates to $2,199 per month as of 2016. Co-pays are charged on a sliding scale.
For more information, see www.state.nj.us/humanservices/doas/services/srcp.
The Alzheimer’s Adult Day Services Program: Caregiving for loved ones with Alzheimer’s or other forms of dementia is particularly stressful. This New Jersey program aims to give such caregivers some time for themselves, by paying a portion of the cost of adult day care services for the person receiving care. To be eligible, the person needing care must have a documented diagnosis of Alzheimer’s or a related dementia and must routinely receive unpaid home care. There are income and asset eligibility criteria, and a sliding scale co-pay.
You can obtain more detailed information by calling the Department of Health and Senior Services at 609-588-6532.
Respite Care for Veterans: Veterans enrolled in the VHA Standard Medical Benefits Package are eligible for respite care assistance if they meet clinical need-for-service standards. Respite care services may be available for up to 30 days each year. The 30 days may be allocated in different ways. As just two examples, the veteran could have a single visit of 30 days in a VA Community Living Center, or could have a home health aide come to his/her home for 6 hour stays spread out during the year.
Caregiver Support Groups
Caregiver support groups can help with feelings of isolation. They connect caregivers to one another, creating a space to talk through challenges and ways of coping, share feelings, needs and concerns, and learn about locally available resources. There is generally no fee.
Of course, not all support groups are alike. Many, but not all, are facilitated by individuals with specialized training. Some are designed for people who care for family members with a particular disease. Some teach strategies and skills. Others claim their primary purpose is to encourage caregivers to be aware of their own needs.
Support groups commonly require “pre-registration”, consisting of a telephone conversation with the facilitator. Caregivers should view the call as an opportunity to find out if the particular group would be a good “fit” for him or her.
Fortunately, there are many caregiver support groups to choose from. The Alzheimer’s Association has prepared a list of groups throughout all New Jersey counties, with helpful contact information. To obtain a copy, call the Alzheimer's Association's 24 hour Helpline at 1-800-272-3900.
This column touches on just a few of the issues and resources surrounding family caregiving. For comprehensive information on government benefits, legal matters, online and in-home skills training, hotlines and more, a good place to start is the United Way’s “Pathways for Caregivers’ Guide”, which can be accessed at www.unitedwaynnj.org/ourwork/heal_caregiversresources.php.
[1] S. Reinhard, L. Feinberg, R. Chohle and A. Houser, “Valuing the Invaluable” (AARP Public Policy Institute, July 2015)
[2] Sarah’s story is a composite of anecdotal accounts of actual caregivers.
[3] AARP and National Alliance for Caregiving, “Caregivers of Older Adults: A Focused Look at Those Caring for Someone Age 50+”. All statistics cited here refer to uncompensated caregivers of persons 50+.
Susan Singer is the founder and chair of the “Caring Community,” a ministry of St. Luke’s Church in Montclair.