“Finding Answers for Family Caregiving,” Ensign, June 2018
Finding Answers for Family Caregiving
The author lives in Virginia, USA.
When families organize themselves, they are better able, as a group, to shoulder caregiving responsibilities that are difficult for an individual to bear alone.
Illustrations by Gary Waters
I will never forget the night my sister in Wisconsin, USA, called and told me my parents needed help. My husband and I lived about 1,000 miles away and didn’t know how debilitating my father’s health problems had become. My sister explained that caring for Dad was taking a heavy toll on my mother and suggested Mom and Dad should come and live with me and my family.
What could we do?
I didn’t think that would be possible. We had a young family, four children ages four to ten, plus we had multiple work and Church responsibilities. Then a scripture came into my mind: “Honour thy father and thy mother” (Exodus 20:12).
I knew the right thing for me to do was to help my mother care for my father. I didn’t know how everything would work out, but the Spirit spoke peace to my heart. I knew we would find answers.
After the phone call, I thought back to something that had happened a few months earlier. My brother, his wife, and their family had brought Mom and Dad on a short vacation to see us. Thinking back on that visit, I knew our home would be a good fit for both Mom and Dad.
Soon the kids and I drove our station wagon to Wisconsin and moved my parents to our home in Virginia. My mother, my husband, and I provided care for my father throughout his illness. My children had the opportunity to participate in caregiving and to grow up in a multi-generational household. The experience of caring for my father even led me back to school to get master’s degrees in both clinical social work and gerontology.
What is family caregiving?
As a social worker and gerontologist, I regularly assist families navigating the complexities of caring for an aging loved one. While residential programs provide a viable alternative in many cases, today’s longer life expectancies, chronic diseases, and increased medical costs mean much of the care provided for older adults today is done by family members, often unpaid relatives who provide care for a parent, grandparent, or other dependent person in their family. Family caregivers usually receive no formal training.
Caring for a loved one usually necessitates help from multiple family members, but this can be tricky. Even the best families face challenges deciding how to provide care for an aging parent. And for those in the 40–60 age bracket, the responsibilities of caring for an aging parent—while at the same time caring for younger children and adult children—can prove to be a struggle.
Where will care take place?
Caring for my father at my home was a good fit for me and my family. However, there is not a one-size-fits-all solution. Each individual and family face a unique set of circumstances, and caring for a loved one in a home setting may not be appropriate for you. The individual and family may also need to reassess location of care as health-care needs change.
Much of the decision about health-care location depends upon the health-care needs of the individual and the family’s ability to meet those needs in a home setting. An assisted-living facility, continued-care retirement center, nursing home, memory center, or medical group home may better meet the needs of those with acute or chronic health-care needs. The cost of such facilities varies, and costs rise as care level increases.
How can adult children navigate caregiving responsibilities?
The responsibilities involved in caregiving can create strain between family members. Those who live far away may not fully understand the demands involved in caring for someone on a daily basis. Siblings may revert to previous roles, such as the “responsible one,” or they may assume that because someone played a certain role in the past they will continue to play that role in the future. Establishing appropriate roles for today’s needs requires recognizing what contributions each sibling can make both now and in the future.
Adult children caring for an aged parent may find it helpful to hold a family council to discuss their parent’s needs, work through what will need to be done, and divide responsibilities. Everyone should contribute if possible because caregiving is more than a one-person job. If family members cannot contribute direct care, they can contribute in other ways if circumstances allow, such as helping with household chores, providing transportation, shopping for groceries, or contributing financially.
Family caregivers can enlist the help of other family members to provide companionship and give service to an older adult. As I work with families caring for an aging loved one, I often suggest they create a schedule, writing down when each family member can help. Some families find it is appropriate to hire paid caregivers to fill in the gaps. This can prove expensive but is sometimes necessary when a spouse or other caregiver is overwhelmed or exhausted.
Teens and children can often provide service and companionship to both the person receiving care and the caregiver. For example, children might look at photo albums with an older person and discuss life experiences with them. Older adults have accumulated a lifetime of wisdom and, if able, may be delighted to share their knowledge.
“Some feel that their loved one is taken care of just by being placed in assisted living,” said one sister who is caring for an aging parent. “But the family should still support that loved one with regular contact.”
The responsibilities of caregiving frequently fall on one person, often a daughter or wife. To avoid stress or resentment, it is important that caregivers reach out to others for help, clearly communicating what is needed. When families organize themselves, they are better able to shoulder as a group responsibilities that are difficult for an individual to bear alone. If all family members assist, there is less chance that one or two will experience caregiver stress and burnout.
Where can we turn for help?
Even the Savior knew when to ask for help. While on the cross He asked John to care for His mother (see John 19:26–27).
In addition to reaching out to each other, family members can reach out to the bishop, the Relief Society president, quorum leaders, and ministering brothers and sisters. Community resources such as a home health agency, department of social services, or a local area agency on aging can also provide information and resources.
Community and governmental agencies may also provide assistance with meals, transportation, housekeeping, home health care, and applying for benefits. They can also offer guidance for avoiding or combatting elder abuse or financial exploitation.
What if we feel overwhelmed?
One way to cope is to break down tasks and responsibilities into simpler steps, then take one step at a time. Also, it is important to take care of yourself when you are a caregiver. Take time to care for your own physical, social, and spiritual needs. “See that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength” (Mosiah 4:27).
Elder Jeffrey R. Holland of the Quorum of the Twelve Apostles offered this counsel:
“For those of you who earnestly seek to bear another’s burdens, it is important that you refortify yourself and build yourself back up when others expect so much of you and indeed take so much out of you. No one is so strong that he or she does not ever feel fatigued or frustrated or recognize the need to care for themselves. Jesus certainly experienced that fatigue, felt the drain on His strength. He gave and gave, but there was a cost attached to that, and He felt the effects of so many relying on Him. When the woman with an issue of blood touched Him in the crowd, He healed her, but He also noted that ‘virtue had gone out of him’ [see Mark 5:25–34].
“I have always been amazed that He could sleep through a storm on the Sea of Galilee so serious and severe that His experienced fishermen disciples thought the ship was going down. How tired is that? How many sermons can you give and blessings can you administer without being absolutely exhausted? The caregivers have to have care too. You have to have something in the tank before you can give it to others.”1
Where can caregivers find hope?
Elder Robert D. Hales (1932–2017) of the Quorum of the Twelve Apostles acknowledged his wife’s role as “the special caregiver in my life.” He said caregiving is a “special way disciples show their love for the Savior. … I pay tribute to all who serve the Lord as caregivers. How the Lord loves you! In your quiet, unheralded service, you are following Him who promised, ‘Thy Father who seeth in secret, himself shall reward thee openly’ [3 Nephi 13:4; see also Matthew 6:4].”
Elder Hales continued: “If you are suffering deeply, with others or alone, I urge you to let the Savior be your caregiver. Lean on His ample arm. Accept His assurance. ‘I will not leave you comfortless: I will come to you,’ He promises [John 14:18].”2 Sometimes this may seem like the only source of help, but it is real.
What are some of the best practices in caregiving?
Christine Jensen, PhD—director of health services research for the Riverside Center for Excellence in Aging and Lifelong Health in Williamsburg, Virginia, USA, and master trainer at the Rosalynn Carter Institute for Caregiving—suggests that as a caregiver, you should:
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Be an advocate for yourself and the person you are caring for.
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Not be embarrassed about asking for help.
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Realize you are not alone.
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Think of yourself as a “care partner” when advocating for those in your care.
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Develop relationships with local agencies and ask what services they offer.
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Tell your doctor you are a caregiver. “Serving as a caregiver plays an important part in your own physical and mental well-being.”
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Take care of yourself. “Caregivers tend to put themselves last and their loved ones first. But if they don’t care for themselves, they may end up unable to help.”3
What are the rewards of caregiving?
Although caregiving can be challenging, it can also be rewarding.
When caregivers find meaning in the care they provide, the experience can be both emotionally and spiritually transformative. Caregiving can enable both giver and receiver to develop compassion and gratitude. It can heal and enhance relationships with family members. It may even help the caregiver to develop new skills, competencies, and feelings of self-worth.
In my professional experience, as well as in my personal life, I have seen the blessings that come to those who turn to the Lord for support as they provide care for others. I know that with the Savior’s help, Heavenly Father’s help, and the guidance of the Holy Ghost, caregivers can be edified and find the strength to carry on.