Caregivers Need Care Too
Almost anyone can be a caregiver.
From pharmacists to doctors to social workers, the network of those who provide care for the elderly can be extensive. But the responsibilities for day-to-day care, meeting a senior’s immediate needs like food and cleanliness, often fall to family members who have no formal training and only know that they are needed.
Jaime Cobb, vice president of dementia & caregiver education at James L. West Center for Dementia Care, said the industry trend is to use the term “care partners” to encompass those close relatives who do the bulk of the daily hard work.
“Because a lot of people don’t define themselves as caregivers, especially spouses,” she said. “It also puts people’s roles in a new light.”
Among the significant challenges facing these day-to-day care partners is the sense of guilt that accompanies taking a break or engaging in an activity designed to bring personal joy or fulfillment. Even meeting their own basic needs — exercise, medical care, eating — can be difficult to prioritize.
Leaving a loved one to meet friends for a standing weekly lunch, attending church, exercising, shopping, sleeping or reading can often cause feelings of guilt and shame.
Giving up all the things you enjoy can lead to depression and anxiety. Physical health can also be affected if a person neglects self-care. Throw in life during a pandemic, when even a simple trip to the store is made more difficult, and the risk of burnout and depression is even greater.
“And caregivers are so exhausted by the end of day just doing those tasks, they don’t have the energy to do those quality things if they’re not taking care of themselves,” Cobb said.
For those who care for people with dementia or other memory loss issues, the experience can be even more draining, said Dr. Sarah Ross, assistant professor of geriatrics at the Center for Geriatrics at University of North Texas Health Science Center. Dementia patients, for example, may say unkind things to people they don’t recognize or keep caregivers on their toes by wandering off, and it is emotionally painful to see loved ones unable to recognize people close to them.
“They don’t really believe those things that they say. They're at a confused state of mind,” Ross said. “I think that’s what makes it more emotionally draining.”
While some care providers may feel guilty, time away from caregiving is actually a key to providing quality care.
“Stress can negatively affect your health, well-being and ability to provide care,” according to the AARP’s “Prepare to Care Guide.” “Schedule regular time for what is important to you and get help from others.”
Even an hour away for lunch or time with friends and family can be helpful.
It is vitally important to make sure you are attending to your own physical needs. An estimated 70% of caregivers experience a decline in their own health. The downturn is often exacerbated by poor diet, lack of exercise and poor sleep.
Caregivers have a tendency to wait too long to ask for help. Many caregivers do not recognize the stress they are under, so it is a good idea to listen to others when they offer help or express concern.
Nearly half of caregivers do not seek any help, according to the Family Caregiver Alliance.
Support groups or programs like Dementia C.A.R.E.S. (Caregivers Accessing Resources, Education and Support), a free, six-week education and support program offered by the University of North Texas Health Science Center, offer dual benefits to caregivers. Such groups can connect a caregiver with like-minded people facing similar challenges, and the meetings offer a break from the day-to-day tasks.
Each week the program tackles a different topic, like understanding dementia, while also providing companionship and support among caregivers.
“Ã¢This program helps caregivers to better understand and address the changes happening with their loved ones and learn coping mechanisms,” said Jane Oderberg, Dementia C.A.R.E.S. instructor and project coordinator. “It is also support from others facing similar issues and they bond to help each other.”
Finally, remember that negative feelings aren’t unusual. Such emotions are an expected part of caregiving as spelled out in Jo Horne’s Caregiver Bill of Rights: “I have the right to… get angry, be depressed, and express other difficult feelings occasionally.”
Who Is a Caregiver?
According to the AARP report “Caregiving in the U.S. 2020,” Approximately 53 million Americans are considered “caregivers.” Spouses, children, friends, co-workers and neighbors all fill the role, which includes a variety of unpaid duties including:
• Running errands
• Buying groceries
• Providing transportation
• Assisting with medical needs
• Moving someone from room to room or from a bed to a chair
• Setting up appointments
• Offering companionship
BASICS OF SELF CARE
• Ask for help when needed.
• Spend time with friends.
• Join a support group — in person or online.
• Take breaks each day.
• Keep up with hobbies.