Illustrations by Kathleen Peterson
I saw my role as a family caregiver emerging as my aging mother sat at my dining room table. A portable file of medical bills and prescription drug information lay over the tabletop. My mother, with touch-tone phone in hand, was attempting to navigate a phone tree system to order prescription medications. Before she could push the correct button, we heard the automated phone system say, “I’m sorry, I didn’t recognize your choice.” Over the next several hours, I noticed nothing had changed on the dining room table, and yet I realized everything was about to change for me. I was 35 years old.
During the ensuing years, I accompanied my mother to a variety of health-related appointments and helped manage her medications, financial affairs, and medical bills. I found myself rushing around so I could then slow down when I was with her, trying to do the best I could for her with little or no information. Mom was aggravated with her declining health and frustrated that she was losing control of her life. She vacillated between being grateful for our help and having the impression that her adult children were sometimes against her.
My own life was also in transition. My middle-aged husband was diagnosed with a terminal illness, three of our four daughters were married, and I became a young grandmother. I continued to work full-time in my home office in order to have the flexibility I needed to be everything to everyone. I learned the hard way that I was not invincible and spent a week in the hospital due to sheer exhaustion. I had become a completely burned-out family caregiver.
My story is not unique. A kaleidoscope of various caregiving scenarios can be found in communities worldwide as families strive to care for aging loved ones. Two questions warrant our thoughtful consideration:
What can we do to support family caregivers?
How are we preparing to face unscheduled changes in our lives and those of our loved ones?
The following principles and practices may be helpful as we ponder these important matters.
Seeking Divine Perspective
“The Family: A Proclamation to the World” instructs us that in sacred family responsibilities, “extended families should lend support when needed,” especially when circumstances arise that necessitate adaptation.1 We are additionally counseled that “the purposes of Church welfare are to help members become self-reliant, to care for the poor and needy, and to give service.”2
As priesthood holders and Relief Society sisters, we have the opportunity to watch over and strengthen any caregivers who may be in our charge. The Prophet Joseph Smith said, “I teach them correct principles, and they govern themselves.”3 While honoring the self-determination of each individual and family, we can seek divine guidance and perspective in knowing how we can appropriately participate in providing temporary relief when they become caregivers or when they seem to be reaching burnout in caring for a family member.
Starting the Conversation
It is important to discuss our health-care wishes with our loved ones, and we know we should put our wishes in writing, but most of us have not taken these steps. When such steps have not been taken, families may struggle with decisions that often have to be made under difficult circumstances and emotional distress.
An advance directive allows you to direct your health-care wishes in advance so they will be honored at a time when you may not be able to speak for yourself. Durable powers of attorney for medical and financial issues allow you to designate someone of your choosing to act in your behalf and in accordance with your wishes. It may be helpful to think of this as a quality-of-life issue, for that is exactly what it is.
In the same way that we do not wait for a natural disaster to begin our emergency preparedness, we should prepare in advance for aging and caregiving roles. As we assess probable needs and then plan accordingly, we enable the Lord’s promised blessings of peace. He will bless us for our effort, knowing we have done all we can while we are able to do so.
The relationship between a caregiver and care receiver is a sacred one. Sometimes, though, as our responsibilities increase over time, our nurturing love and emotional support can give way to being “careful and troubled about many things.” Like Martha, we may find it difficult to keep “that good part” in perspective, as Mary did, especially when we are overwhelmed. (See Luke 10:38–42.)
In those times, the Savior pleads for us to share our burdens with Him so that He can help us bear them. “Come unto me, all ye that labour and are heavy laden, and I will give you rest” (Matthew 11:28). He told Paul, “My grace is sufficient for thee: for my strength is made perfect in weakness” (2 Corinthians 12:9).
Elder Dallin H. Oaks of the Quorum of the Twelve Apostles lovingly reminds us that the same promise of help given to the people of Alma (see Mosiah 24:14) applies “to you caregivers who are burdened.”4 He explained, “Sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.” In this way, we can, like the people of Alma, “submit cheerfully and with patience to all the will of the Lord” (Mosiah 24:15).5
“Therefore, let your hearts be comforted … ; for all flesh is in mine hands; be still and know that I am God” (D&C 101:16). Trusting the Lord and His promises will aid us in keeping perspective and allow His atoning sacrifice to become effectual in our lives.
The oftentimes taxing role of a caregiver can be extremely rewarding when balance and perspective are integrated with support from others. This is vital to avoid compromising our own health as a result of compassion fatigue. The Savior bids all who wish to be “called his people” to “bear one another’s burdens, that they may be light” (Mosiah 18:8).
When I was suddenly hospitalized, it became obvious that it had not been in anyone’s best interest for me to shoulder the majority of the caregiving responsibilities alone. I had been serving my elderly mother at the unintended expense of my own health and well-being.
I decided to initiate a win-win strategy to engage support by creating two lists. One list comprised all of the responsibilities I carried, and the second list contained the names of family and friends. I shared the list of tasks with each individual, and with humility and gratitude I accepted their willingness to each choose a tangible way they could serve in a way that was a good fit for them.
We must resist the urge to assume that others are too busy to help with our caregiving roles or that this is only our responsibility. By allowing others to step forward from the most unlikely places, we can learn that most people really do want to help. Providing this opportunity to them will bring balance into our lives, and our effectiveness as a caregiver will actually increase overall.
“And 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).
Using Community Resources
Valuable resources are available to help caregivers, but few are accessed because people do not know where to find them. The scriptures counsel us to “seek ye diligently and teach one another words of wisdom; yea, seek ye out of the best books words of wisdom; seek learning, even by study and also by faith” (D&C 88:118). To that end, as we seek knowledge both spiritual and temporal, we can turn to a variety of reputable organizations and websites that are dedicated to caregiver education and support and to dealing with disabilities, dementias, and chronic diseases (see sidebar).
Knowledge is power, and finding and making use of appropriate resources will aid the caregiver in accessing that power. The available information can be invaluable in teaching caregivers to become self-reliant and can give guidance in creating a good quality of life for all those family members involved in the caregiving experience.
Walking the Path of the Savior
“There are only four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”6
While anxiously engaged in preparing for our own advancing years, may we also be found clothing ourselves with “the bond of charity” (D&C 88:125) and feeding the Savior’s sheep (see John 21:16) with our willingness “to bear one another’s burdens, that they may be light” (Mosiah 18:8). It can be one of the greatest sanctifying privileges we have in life as we walk the path the Savior has modeled for us by the way He lived His life.
Where to Find Help
“Federal Resources for Caregivers” (whitehouseconferenceonaging.gov/happening/resources-caregivers.html). Source for finding agencies and community-based organizations that help aging adults and their caregivers. Information on disabilities, veterans, hospice care, housing, employee assistance programs, National Institutes of Health resources, and more.
“U.S. Department of Health and Human Services: Administration for Community Living” (acl.gov/Get_Help/Index.aspx). Local resources for brain health, older adults, disabilities, funded resource centers, and more.
“Alzheimer’s Association” (alz.org). Information and resources for all types of dementia and related disorders. Source for finding specific dementia organizations.
“Alzheimer’s Disease International” (alz.co.uk). International listing of Alzheimer’s and dementia organizations.
“National Hospice and Palliative Care Organization: CaringInfo” (caringinfo.org/i4a/pages/index.cfm?pageid=3289). Free advance directives for each state.
See “The Family: A Proclamation to the World,” Ensign, Nov. 2010, 129.
Handbook 2: Administering the Church (2010), 6.1.
Teachings of Presidents of the Church: Joseph Smith (2007), 284.
Dallin H. Oaks, “He Heals the Heavy Laden,” Ensign, Nov. 2006, 8.
See Dallin H. Oaks, “He Heals the Heavy Laden,” 7–8.
Rosalynn Carter Institute for Caregiving, www.rosalynncarter.org.