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Sharlene Greenfield: One Caregiver's Dilemma
For many caregivers, the strains of caring for family members can take an emotional and physical toll, but there is help.
By Sharon Kay
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Sharlene Greenfield thought that her parents had planned well for their old age and declining health.
They created a family trust, an advanced care directive, and a living will. Several years ago, they purchased long-term care insurance and a cemetery plot, and they consulted a gerontologist. Greenfield's mother, Dolleen Jewett, then 84, was prescribed medications to slow her dementia. Her father, Duain Jewett, who was his wife's primary caregiver at the time, was counseled on caring for her mother.
But six years later, Greenfield, 62, a music teacher in Bountiful, Utah, is exhausted from caring for her parents.
In August 2012, Dolleen, now 90 with progressive dementia, fell and broke her shoulder. Then Duain, 87, recently diagnosed with heart problems, fell and fractured his neck. Greenfield had no alternative but to temporarily leave her husband and move in with her parents 20 minutes away.
“The first month I was just feeling so overwhelmed — my personality was being sucked out of me. I didn’t sleep well at night. My mind was constantly stressed, and I didn’t have time for my family,” says Greenfield, who has three daughters and one son. All are grown and living on their own. Greenfield also has six grandchildren and another grandchild on the way.
“One of my daughters is going to have a baby in a couple of months, and she could use my help with her toddler. She and her husband worked tirelessly to support my parents early on. Another daughter is getting married in a couple of months, and she is in the midst of planning and scheduling her big day. I want to be there for them, too,” says Greenfield. "My parents always planned ahead and had so many things in place. I didn’t see this coming.”
The Sandwich Generation
Greenfield is among the estimated 65.7 million caregivers in the United States who devote more than 20 unpaid hours a week to care for an adult or child family member. Caregivers are predominantly women. One-third take care of two or more people.
Though Greenfield's children are already grown, she’s part of what’s known as the Sandwich Generation.
“You’re sandwiched between your family and your parents — your parents are living longer and their needs are coming up at the same time as your own family,” says Greenfield. According to the Pew Research Center, about 1 in 8 Americans aged 40 to 60 is raising a child and caring for a parent.
And a caregiver’s needs end up taking a back seat.
Caregivers neglect their own health, and many are at the age when they are developing their own chronic issues, says Gail Hunt, president of the National Alliance for Caregiving, a non-profit organization devoted to improved research and support for caregivers.
“If they have a chronic disease, they don’t have their own check-ups. They don’t have dental check-ups, and they neglect mammograms and flu shots,” says Hunt, who stresses that flu vaccines are particularly important when .
A study of California’s more than 6 million family caregivers found they had a higher rate of unhealthy behaviors, such as smoking, and were more apt to have unhealthy futures as a result.
Breaking Point for a Caregiver
A nurse’s aide and a physical therapist made short visits to help bathe Dolleen and rehabilitate both of Greenfield's parents after their falls. The neighbors worked on the overgrown yard. And Greenfield’s youngest daughter and son-in-law took care of repairs to their grandparents’ house. Still, Greenfield’s parents needed support day and night. She was running out of steam.
“When I went home for visits, I was emotionally and spiritually drained,” says Greenfield. "I realized it was going to take a toll on my marriage. I’d given up exercise and hobbies. I felt like my blood pressure was going up.”
“If you see yourself beginning to have signs of depression, you need to get some help, and some respite care,” says Hunt. Respite care facilities provide short-term day care for caregivers of elderly family -- and a much-needed break for the caregiver.
Hunt also suggests asking family, friends, and neighbors to help you take a break at specific hours and on specific days. A tool produced by Lotsa Helping Hands allows you to create an and a schedule for volunteers to pitch in.
When school started and Greenfield returned to her job as music teacher, she finally reached the breaking point. It was time to make arrangements for her mother to move into a full-time care facility. “School was something I loved and felt I was doing well. I didn’t want to give that up and my dad said he didn’t expect me to.”
A recent study conducted by MetLife (PDF), the National Alliance for Caregiving, and New York Medical College shows that caregivers who leave the workplace lose an average of 0,000 of income over their lifetime.
“If it doesn’t just have an impact on your salary now, it may impact your retirement and your social security,” she says. Hunt adds that working caregivers may be able to take advantage of stress management and wellness classes in their workplace to help cope with the stress of caregiving at home.
“I found a lovely place where there are people my mom knows and who know her, and I feel good about it,” says Greenfield.
Duain has temporarily relocated to a rehabilitation hospital until his neck has healed. Because he was his wife’s caregiver for so long, Greenfield says he feels that he needs some space to take better care of himself. The couple will probably continue to live apart.
As she begins to create some distance from her parents, Greenfield reflects on the strains of caregiving and the toll on her family. Her father is grateful for her help and in many ways their relationship is better than it’s been in years, but it wasn’t without a struggle. “My dad seems to pride himself on being a bit of a curmudgeon, and I have not always gotten along with him,” says Greenfield.
"It's hard to choose between your parents who do so much for you, and your own family, but at some point you have to go back to your family."
Learning From Caregiving Experience
Greenfield’s friends and neighbors have watched what she’s going through and confess that they know it could be them some day. She wants people to learn from her experience and shares the following advice:
- Make sure your parents purchase long-term care insurance while they’re young enough to get a good rate.
- Have a talk with your parents before they need you as a primary caregiver. Find out where they keep their paperwork and make copies, as needed.
- If your parents are veterans, apply for veteran's benefits for them and apply early — it can take four months to a year for the government to process your claim, but benefits will be retroactive and begin at the date of your application. Your gerontologist may be able to help you get started.
- Read your parent's long-term care insurance policy and know what's in it. It can take 30 to 45 days to process a claim for assisted living benefits. If that benefit is not retroactive, you will have to come up with the first month's payment.
- Even though you are the primary caregiver, respect your parents’ rights to know what is going on and involve them — as much as possible — in any planning you make for them. Reassure them that their wants and needs will be respected.
- Try to help your parents find new interests and keep their minds active.
Tools for Caregivers
Hunt recommends the following caregiving organizations:
- Caring.com provides resources for caregivers, online support groups and chat rooms to get advice or, “if you want to let off some steam,” says Hunt.
- Eldercare.gov provides information on resources available for older people in your community. They may also have information on programs that support caregivers.
- The Savvy Caregiver is a training program for caregivers of relatives or friends with Alzheimer’s disease or another dementia. A free course may be available through your state agency on aging or local Alzheimer's Association chapter. For more information, contact your state or county agency on aging through Eldercare.gov.
- NextStepinCare.org provides online courses for caregivers to learn the basics of caring for a loved one with a serious or chronic illness. They also offer a specific training geared toward caring for someone who is gay, lesbian, bisexual, or transgendered (LGBT).
TELL US: What caregiver challenges do you struggle with in your family? Let us know in the comments.
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