Caregivers On Demand offers online options for caregivers

Virginia Valenzuela (at left) of Morningside Ministries conducts a live video on demand session of Caregivers On Demand, with caregivers Irma Cardenas, Reinette Alecozay, Virginia P. Morales and Lupita Burmudez. Photo provided

SAN ANTONIO • “Why me?” The answer to that question, put to five family caregivers in a live video on demand webcast one September morning at Morningside Ministries, was in line with national statistics. About 60 percent of family caregivers are women.

The initial session participants for this Caregivers On Demand (COD) pilot program, drawn from a small rotating pool of volunteers, included Maria Eva, a Congregation of Divine Providence sister who cares for her 93-year-old father; Heather, a young woman who has lived with and looked after her 80-year-old grandmother for 12 years; Vicki, caregiver for her 88-year-old father; Lupita, another young woman, caring for her 67-year-old ailing father but also looking after her mother; and Nancy, a married Catholic hospital chaplain, caring for a mother with dementia.

Family caregivers provide the majority (about 80 percent) of long-term care in the United States, according to the National Family Caregivers Association (NFCA), with 30 percent of family caregivers who care for seniors being themselves 65 years or older. Another 15 percent are between the ages of 45 and 54.

The role of caregiver often falls to the family member who is single or the one most available to care for the aging family member, and such was the case here. With Lupita, the youngest child, her parents actually told her that her birth was planned so they would have someone to care for them in their old age. Heather had originally come to live with her grandmother while attending college and looking after her eventually became a way of life.

“Most people never come to a facility like this,” notes Nancy Thompson, Executive Director of the Elizabeth McGown Training Institute at Morningside Ministries and formerly director of the Center for Women at Our Lady of the Lake University (OLLU). “Most people are going to be cared for in their home or in the home of a family member.” She adds that seven out of 10 Alzheimer’s patients remain in their home or that of a loved one, with only about 20 percent of the older population ever coming to a nursing facility.

Morningside Ministries, San Antonio’s largest and oldest faith-based senior care organization, provides nursing, assisted living and retirement facilities, as well as training programs and a senior community center, but sought a way to assist those caring for elderly family members at home. The solution proved to be teleconferencing, leading to the development of a new program, Caregivers On Demand, a service of the Elizabeth McGown Training Institute and the Georgie Briscoe Resource Center.

To develop Caregivers On Demand and serve as director of the new Georgie Briscoe Resource Center in Uvalde, Thompson brought in social worker Virginia Valenzuela, with whom she had worked at the OLLU Center for Women. Valenzuela had been a caregiver herself, looking after her own mother for 20 years.

Twice a month, four to six caregivers are brought together, with Valenzuela as facilitator, for a live webcast via www.mmLearn.org, which is then available later for on demand viewing. In the sessions, the women share the ups and downs of their caregiving experiences, focusing on a specific topic, with viewers being able to send in questions during the session or afterwards. The site also allows for polling of viewers’ responses.

“The biggest issue in this whole area,” says Valenzuela of the typical caregiving situation, “is, ‘Who’s going to help me?’” Often, if someone is found who can help out by staying with the elderly loved one for a day or so, the preparations to make sure they have everything they need can be as stressful as staying home. As Lupita remarks in one session, “A typical day starts the night before.” It involves making sure they have not run out of medications, have the right food, will be able to get to doctor appointments and the like.

Sudden invitations to go out, with or without the loved one, create problems. Freedom to take off any time is no longer an option and can chafe on the caregiver, leading to resentment. When they do take time off from their charge, they feel guilty, as the temporary caretaker may not do things correctly. In some cases, this can be disastrous, creating more problems when the caregiver returns. Perhaps the one cared for may be allowed to eat food they shouldn’t or spend more money than they should.

Sometimes, however, it is a matter of both caregiver and the cared for accepting another family member doing something differently than they are used to.

Lupita brings up the point that, when there are siblings, the one who is caregiver can be treated differently by the parent. “You’re not getting the affection,” she says. The frustrations of the now dependent parent can get taken out on the child now doing the parenting, while less frequently seen children may be viewed in a rosier light and spoken of — and to — more affectionately.

“I’ve become the parent,” says Sister Maria Eva. This fact was keenly brought home to Heather the day in the grocery store when her grandmother asked her permission to buy a candy bar “like a child.” Frazzled caregivers can easily lose patience with the elderly family member, group members agree, and need to keep in mind their aging loved ones, struggling with the changes of aging, cannot help themselves, though their actions and words can be annoying and hurtful at times.

Getting family to do their fair share is another difficulty. Siblings can think you are doing such a good job they don’t want to interfere. “You have to ask for help,” says Sister Eva Maria.
She recounts how she learned to call on friends to help out when no family member was available and she needed to be elsewhere. Other caregivers have family members who say they would like to help, but then are never available when called on.

Caregivers often must deal with other responsibilities as well, such as holding down a job and looking after a husband and children. Two in the COD group have the added strain of their jobs and home life creating similar stresses. Heather is a social worker, while Vicki works as a caregiver for a 77-year-old woman.

There are financial stresses, as well as emotional and physical ones, in caring for someone on a daily basis. The discussion group members have so far been able to get by financially. Some, luckily, have retirement funds or pensions to see them through and some of the parents being cared for had put away savings in earlier years for their future care.

Others, like Lupita, still young in the workforce, worry about using up all their vacation or sick days during medical emergencies and face the prospect of being on leave without pay.
Repeated absences can mean the loss of one’s job and Reinette, in a later group session, tells of friends who lost their business while caring for an ailing family member.

In another session, caregivers describe their personal ways of alleviating the constant stress by things as simple as taking a daily walk, going to the gym or praying the rosary. Several agree that if given a day off from their constant responsibilities, they would choose the luxury of a day at home with nothing to do.

A major benefit of the program is allowing the participating caregivers, as well as those watching online, to realize they are not alone. The women share moments of sadness and frustration and have the opportunity to vent with others who can appreciate what they are going through. Surprisingly, there is much laughter too, which can be therapeutic. Valenzuela points out though that the sessions should not be considered therapy and urges viewers with depression or other health concerns to seek professional help.

NFCA statistics show that the stress of family caregiving can lessen a caregiver’s life expectancy by 10 years. A high number of such caregivers experience chronic illness themselves, and elderly spousal caregivers with chronic illnesses have a 63 percent higher mortality rate than non-caregiving peers.

Valenzuela notes that taking care of oneself is a paramount issue. “You are so busy taking care of that person, meeting all their doctors’ appointments, meeting all their issues, that you often forget to do your annual pap smear, your annual mammogram,” she says. “All those things are so important to women. Often we neglect those because we’re taking care of somebody else.”

Every session ends with Valenzuela reminding the group and viewing caregivers of a cardinal rule: “Take care of yourself, so that you can take care of those you love.”