“God doesn’t look at how much we do, but with how much love we do it.”
– St. Teresa of Kolkata
No matter how you arrive at the role of caregiver, whether suddenly or gradually, there is a spiritual component to caregiving. We make a conscious decision to be our loved one’s caregiver. This is a God-given vocation which we accept in the name of love, just like St. John accepted Our Lady into his care at the foot of the cross. (The Spirituality of Catholic Caregiving www.FSJC.org)
When my sister Regina was diagnosed with incurable melanoma in 2018, her wish was to remain in her home surrounded by those she loved. I was not prepared for all I would be faced with as her cancer progressed. I accompanied her to doctor’s appointments, and to make funeral arrangements; I helped her prepare for a medical procedure; I did housework and stayed with her during the day and/or at night on a rotating basis. Hospice care supported me and my family and our friends so that we could be the caregivers Regina needed. At times, this was a challenging and frightening time for me, especially during the last few months when she was in constant pain. I know that God was with me during that time, helping me to cope with what was happening to Regina and giving me the strength to be there for her and to accept my vocation as one of her caregivers.
My family and our friends represented just one small part of the staggering family caregiver statistics* in the United States:
- More than 1 in 5 Americans (19%) were providing unpaid care to an adult with health or functional needs.
- In 2020, there were an estimated 53 million unpaid adult caregivers, up from an estimated 43.5 million in 2015, or an increase of 9.5 million in 5 years.
- The economic value of unpaid caregiver work in 2017 was estimated at $470 billion.
- Family caregiving spans all generations including Boomers, Gen-X, Gen-Z and Millennials. In 2020, 34% of unpaid caregivers were Boomers.
- 61% of family caregivers were also working. On average, these caregivers gave 20 unpaid hours per week to a family member.
- More women (61%) than men (39%) were caregivers.
*(Caregiving in the US 2020 AARP and the National Alliance for Caregiving)
Without the support of family and friends, my sister would not have been able to stay in her home. Given a choice, most people with an illness or chronic condition choose to remain at home surrounded by those they love. The Ladies of Charity realized that they had the mission, structure and history to provide competent, holistic care to those who wished to remain in their home. To fill this need, The Ladies of Charity Caregiving was incorporated in March 2018. The purpose of this project was “… to provide “Vincentian Care” for the spiritual and physical needs of persons who are sick, elderly and disabled in their homes, while helping people to exit the chains of poverty.” It would be more than “just care.” The project would “… provide comprehensive training for caregivers, offering them a quality career opportunity by establishing a relationship of trust and reciprocity between caregiver and the person needing care.”
By early 2019, everything was in place for the Ladies to begin this project with a pilot site in Pittsburgh, PA. They were accredited by Medicaid, had federal tax exempt status, were licensed and legally incorporated in the State of Pennsylvania, had raised start-up funding, recruited and hired staff, began training caregivers, and hired a national executive director.
The Ladies of Charity Caregiving showed steady growth during 2019, the care was well received, and the Ladies entered 2020 with confidence and lots of plans. There was even to be a second site in Kansas City, MO. Then COVID-19 arrived and stymied the development of the Agency, as more people began working from home and caring for their loved ones. Also, the staff were concerned about their own health. As a result, operations were suspended in March 2021 for a year to explore other options. In 2022, with the state of the limited workforce, and the lack of legislation to increase reimbursement rates (ie. The Build Back Better Bill stalled in Congress), the Board of Directors decided that a small operation like The Ladies of Charity Caregiving was not sustainable. Despite everything, the Ladies of Charity did accomplish what they set out to do, with a “gold star model” of home care, rooted in faith and 400 years of Vincentian tradition. (loccaregiving.org)
This was an unfortunate outcome for this unique home care model. Due to the COVID pandemic, the number of caregivers in the US increased significantly. The following examples show what family caregivers are facing and the support they need to accept their “God-given vocation:”
- A Lady of Charity ’s husband is in rehabilitation after breaking his leg. She is learning how to help him transition from a bed to a chair to a commode because he cannot yet stand and keep his balance. He cannot go home until he can use a walker. Due to other illnesses while in rehab, he has had several set-backs. As a result, he is going to need a lot of care once he returns home. His wife will be his main caregiver.
- A young woman, a health care nurse, working from home since the start of the pandemic, is taking care of two family members—her 20 year old son with cancer and her unemployed husband who recently broke his right leg in 3 places. She has two younger children and another son with special needs. The grandparents are providing babysitting and transportation.
- A dear friend is a caregiver for her 88 year-old sister from Mexico who is in constant sciatic pain, has been in the hospital twice, has no health insurance, and is here on a visa. The bills are mounting with no relief from the expenses while she is in the U.S. My friend and her family are the main caregivers.
I could tell you about several other family caregivers. All have accepted the mission to provide compassionate care with love. The Care Team at my church ministers to people with Alzheimer’s Disease, but they have also had care-partners with Parkinson’s and Huntington’s. There is always a list of family caregivers waiting for the support of the Care Team.
Canada is also concerned about caregivers. A 2018 report from the General Social Survey (GSS) on Caregiving and Care Receiving (www.150.statcan.gc.ca) had these statistics:
- 8 million Canadians age 15 and older (25% of the population) were caregivers; of these, 1.5 million were age 65 and older.
- 9% provided personal care; 74.5% provided transportation. Caregivers age 45-64 were caring for children or parents or both.
- Caregivers age 25-34 were least likely to provide care (17%) Many younger Canadians provide help and support, especially to their grandparents.
- 31% of senior caregivers caring for a spouse or partner spent 30 hours or more a week providing care or help: senior women 20 hours; senior men 14 hours.
- Among older caregivers, 56% of women did household activities such as meal preparation, house cleaning or laundry, vs. 47% of men. Senior men were more likely to provide help with house maintenance and outdoor work.
The United States and Canadian governments need to recognize family caregivers and provide more support for them. This support will only become more important as the population of our countries ages,* and more people choose to remain in their homes surrounded by those they love. The Ladies of Charity Caregiving project begun in 2019 in Pittsburgh, PA, could have become a model for home care throughout the United States and Canada.
Most Holy Spirit, guide me on my journey as a caregiver.
Each step of the way I need you.
I don’t know how long this trip will last.
Please give me comfort and rest when I’m done. Amen.
(Friends of St. John the Caregiver www.FSJC.org)
Marie A. Copeland
Lady of Charity, USA,
Albany, NY Association
*By 2030, over 71 million living in the US will be 65+ (21% of the population) By 2030, 9.5 million Canadians will be 65+ (23% of the population)