Caregivers often put their own health at risk; experts advise to get trained and seek help.
“Until death do us part”: a wedding vow, a promise made to an aging parent and the motto of many family caregivers who devote themselves to long-term care of a loved one.
They’re the meal givers, the medicine givers, the compassion givers. Every day, 40 million family caregivers are helping older parents, spouses and other loved ones live independently at home, often making good on a promise to honor their desire to remain at home as long as possible.
“Smile, laugh, love, breathe, be present” is one piece of advice given to caregivers. “You can take better care of your loved one by taking better care of yourself” is another.
But it’s tough to pull off when you’re pulled 24-7, 365 days a year to your loved one’s side.
Family members caring for older adults often face challenges that put their own physical and emotional health at risk.
“When folks take on the role of caregiver, it’s easy to neglect their own needs,” says Liz Axness, who regularly presents Taking Care of You: Powerful Tools for Caregivers, a six-week seminar sponsored by the Rogue Valley Council of Governments’ Senior and Disability Services. “Their whole world revolves around caregiving.”
Family caregivers often lack professional training, yet they work countless unpaid hours and face significant emotional, physical and financial challenges as they strive to provide quality care for loved ones with complex needs and conditions.
Oregon Care Partners has teamed up with the Alzheimer’s Association to develop free training to help people address the challenges of caring for an aging loved with memory loss, mobility issues, complex medication regimens and confrontational behaviors such as anger and aggression.
The next training is set from 12:30 to 5 p.m. Monday, April 4, at the Hampton Inn, 1122 Morrow Road, Medford.
Classes are online as well. The online courses are geared to those who cannot leave their loved ones’ side and to the “sandwich-generation” — those who are caring for children or grandchildren as well as aging parents or spouses while still trying to hold down jobs.
Michelle Grush, who is a counselor at Scenic Middle School, found herself in the role of caregiver nearly five years ago when it became apparent that her father, now 81, “was in over his head.”
She says that after 30 years as a barber, he was forced to close his business when he started exhibiting signs of early dementia in 2011. She moved him from Grants Pass to Central Point so that he could be closer to her. Although he did not live with her, she shopped, ran errands for him and came by his apartment daily to prepare meals, manage his medications and pay his bills and rent. She also administered his diabetes shots.
When his health declined further, around-the-clock care was necessary to ensure his safety.
“I knew I needed help, so I contacted Senior Services,” says Grush, who later opted for an assisted living facility.
“Overwhelmed is what we hear the most from caregivers,” says Sarah Holland, field services director with the Alzheimer’s Association’s Oregon chapter. “Overwhelmed with the constant needs … it’s a 24-7 job for many.”
As the years melt one into another, the caregiver’s commitment becomes “a long journey,” she says.
Holland knows firsthand the challenges many caregivers face. She and her mother cared for her grandmother, who suffered from vascular dementia over a six-year-period.
Oregon Care Partners’ Angela Neal stresses the importance of “becoming educated . . . better equipped to face the reality of the new normal.”
While many caregivers are caring for loved ones in the aftermath of a stroke or in the last days of a terminal illness, the largest segment is caring for loved ones with Alzheimer’s — the most common of the 85 to 90 forms and types of dementia. Two out three caregivers are women. The stress and distress among these caregivers is greater than those dealing with other diseases or disabilities.
It’s not uncommon for caregivers to experience resentment, anger and guilt.
“Not all who come to our seminars are caring for someone with Alzheimer’s, however a good amount do,” says Axness. “They need to be lifted up . . . learn ways to reduce the stress, relax, balance their lives.”
According to Holland, there are 60,000 Oregonians diagnosed with Alzheimer’s, and 180,000 family caregivers working 20-plus hours a week.
Caring for Alzheimer’s patients “isn’t intuitive,” says Holland. In addition to the memory loss, there are challenging behaviors such as anger, paranoia, anxiety and agitation.
Alzheimer’s takes a devastating toll on caregivers. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; about 40 percent suffer from depression.
Axness says that her seminar participants “talk about the loss of time, relationships, social life, hobbies, money, and identity . . . but the feeling of isolation comes up the most.”
The demands of day-to-day care, changes in family roles and decisions about placement in a care facility can be difficult.
But, keeping in mind that it’s not a sprint, but a marathon, “you need to take to it one day at a time,” says Neal.
Neal recommends caregivers tap into “evidence-based approaches and programs that can help.”
“Becoming well-informed about the disease is one important strategy,” she says. “Programs that teach families about the various stages of Alzheimer’s and about ways to deal with difficult behaviors and other caregiving challenges can help.”
A completely different method of communication needs to be learned too, she adds.
Good coping skills, a strong support network and respite care are other ways to help caregivers handle the stress. Staying physically active provides physical and emotional benefits
“It’s important to take breaks, to care for one’s own health,” says Neal. “Or, you face increased risk of chronic disease.”
She recommends caregivers connect with other caregivers through support groups “to share, laugh, cry, and vent.”
“Connect with others who understand,” she says.
All three experts offered the following as signs that a caregiver needs support:
Health issues, such as feeling tired and fatigued, new or worsening health problems, chronic pain, change in appetite, weight changes.
- Emotional issues, such as irritability, depression, concentration problems, sense of helplessness or hopelessness.
- Sleep problems, such as not easily falling asleep or waking in the night.
When a caregiver reaches his/her threshold and must consider alternative care — an assisted living facility or memory care center — because of quality of life, safety or complex medical needs, it’s important they seek help in the decision-making process.
No matter the decision, “you are always that loved one’s caregiver,” says Axness. “You will always be their advocate.”
“The hardest part,” says Grush, “is remembering how he once was and seeing the decline.
“I miss that part of my dad.”