Caring For Caregivers

All it takes is one emergency. Your widowed mother has a stroke, and this once fiercely independent woman can no longer live alone.

In other cases, it happens slowly over time. Your aging parents suffer cognitive decline, can no longer drive and need help managing medication and doctor visits.

In both situations, adult children—and sometimes other relatives—find themselves taking on the role of caregiver. After all, it’s what you should do. Right?

Experts caution that one of the biggest mistakes you can make is leaping into the role of caregiver based purely on emotion without thinking it through, yet people do this on a regular basis. Caregiving for a loved one is an enormous undertaking and should be a decision you choose willingly—not something you take on out of obligation or guilt.

“I think family members should be the ‘first line of defense.’ If it is planned and prepared for properly, there can be wonderful benefits in a multigenerational household, but as the caregiver, you have to set the tone,” notes Carol O’Dell, a certified caregiving wellness expert and contributing editor at caring.com, an online resource for caregivers.

O’Dell has hosted hundreds of caregiver workshops around the country and is also the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, which she wrote about caring for her elderly mother who had Parkinson’s and Alzheimer’s.

Becoming A Caregiver

O’Dell says that the first step is deciding if you can actually afford to become a caregiver. “Affordability” refers to more than just finances—it also includes your health, relationships and career.

“It does take some soul searching and an honest, hard look at your life,” she notes. “If you are in a relationship, you owe it to your partner and/or family to sit down and have many discussions before committing to doing this.”

These discussions should include not just you and the person you will be taking care of but everyone involved. This is the time to lay everything on the table: everyone’s expectations of the living and care arrangements, what each person is willing to contribute and one of the most important topics—boundaries. Setting boundaries in the beginning is crucial.

Let’s say your aging father can no longer drive and is moving in with you. Are you going to take on the responsibility of driving him to the twice-weekly card games he’s been playing for years, or will he need to give them up or agree to a different schedule? It sounds trivial, but such scenarios can morph into frustration and hurt feelings if boundaries are not set and discussed from the start.

“There were times when my mom was hospitalized and I was sleeping on the vinyl chair by her bed while my husband was home taking care of our kids,” recalls O’Dell. “But if you do that all the time, you lose your sense of balance. Your job as a caregiver is to be left with a life when it’s all said and done. It sounds harsh, but if you’re caring for an elderly person with an illness, eventually that person is going to die. You need to nurture yourself and the loving relationships you’re going to have left.”

Taking Care Of Yourself

In the many workshops she’s given, O’Dell says the most gut-wrenching questions come from caregivers who ask, “When am I going to feel like ‘me’ again?”

Losing your identity in caregiving is common; it’s also a huge mistake.

“You’re not doing your loved one any favors if you stop taking care of yourself. You can’t help someone live longer or better by losing yourself,” she notes, adding that it’s not just about the physical. “Don’t lose your sense of humor, your spunk, your spirit. If you lose the spark that is ‘you,’ you’ve lost everything.”

O’Dell recalls the pivotal moment after her mother had passed when she realized the extent of the sacrifices she’d made during her years of caretaking.

“I had a moment of revelation, when I said, ‘I want my life back, my health back, my marriage back. I wanted me back.’ I’d like to say I didn’t lose myself while caretaking, but in a lot of respects, I did.”

O’Dell encourages caregivers to realize they don’t have to shoulder the entire burden on their own. Being a caretaker doesn’t mean you shouldn’t ask for help. This is when attending a caregiver workshop can offer multiple solutions. Geriatric care managers, social workers, doctors and other caregivers can all be invaluable resources for brainstorming ways to solve whatever problems you’re dealing with.

“There are caregiver workshops in almost every community, often put on by senior communities, hospitals, large churches, even funeral homes,” says O’Dell, who suggests starting with your local senior community center.

You can also do an internet search; just type in “caregiver workshops/events” and your town.

“These workshops can help you figure out the world of caregiving and gather local resources,” says O’Dell. “You can also look around the room and realize you’re not alone.”

Time For A Change

If it feels as though your own personal life, your health, your family, friends and career have been sacrificed on the altar of caregiving, this is a red flag that you need to stop and re-evaluate the entire situation.

“Caregiving requires constant reassessment, and it should always be a choice. Even if you have committed to it, this doesn’t mean it’s forever. It may be for a season, and there may come a time when it’s no longer a healthy environment for all members of the family,” says O’Dell.

For example, you shouldn’t have to continuously choose between your children or your marriage and the loved one you’re caring for. If a situation has become truly detrimental to the lives of those you love, it may be time to make the tough decision and realize caregiving is no longer an option and another arrangement must be found.

Yes, we make sacrifices for those we love, but there may come a time when moving your loved one to a nursing home or other care facility is the best situation for all involved. If so, don’t beat yourself up. Don’t let guilt keep you in a situation that has become overwhelming or even dangerous.

Overwhelming Responsibility

“Caretaking for my Aunt Bernice was the most challenging, yet extremely rewarding time of my life,” reflects Linda Bullington of Ocala, who spent five years as primary caretaker for her aging relative until her aunt passed in 2014.

After her widowed aunt broke her arm and had a series of strokes, she was moved into an assisted living facility, and Bullington became her primary caretaker, doing everything except personal hygiene care. For a year, Bullington took on these duties while still working full time, but the responsibilities were overwhelming, and she eventually gave up her job.

With all the back-and-forth driving required, Bullington at one point thought it might be easier if Aunt Bernice moved into their home, but her husband wisely disagreed. After candid discussions, Bullington admitted that decision was a boundary she was glad he’d insisted upon.

As it was, she felt pulled in two directions and fought depression, fatigue and guilt because she couldn’t spend the time she wanted with her husband and family due to the constant demands of caregiving. Vacations were out of the question. By the time Aunt Bernice passed at age 96, Bullington’s own physical and emotional health were compromised.

“I was burning the candle at both ends but didn’t realize until after she passed how much I had neglected ‘me,’” says Bullington, who finally went to the doctor because she felt like she was “falling apart.”

“He told me I’d been so focused on taking care of my aunt that I had neglected my own health and state of mind,” says Bullington, who urges other caregivers not to make the same mistake.

“You have to exercise, rest, drink plenty of water, eat healthy meals and take time to get away from everything to regain your focus, even if it’s just for 15 minutes,” she says. “Caregivers face defeat when they don’t take care of themselves. They spend energy, time and health as if these things were unlimited, and they’re too embarrassed to express their real feelings, so they quietly suffer. If you don’t take time for yourself, you’re going to fall apart.”

Caregiver Burnout

When you’re a caregiver, there are definite signs you should watch for so you don’t get to the point where you’ve put your own life on the back burner.

If any of the following apply to you (especially if multiple statements apply), you need to seriously consider what the stress of caregiving is costing you, physically and emotionally, and reassess the situation.

  • Getting less than seven hours sleep
  • Not participating in hobbies/activities you formerly enjoyed
  • Easily irritated/short fuse
  • Difficulty concentrating
  • Constantly feeling overwhelmed
  • Using alcohol, prescription sedatives or other substances to help yourself relax

The extreme stress of family caregiving can cause premature aging. Researchers believe that stress of this magnitude can take as much as 10 years off the caregiver’s life.

Studies have shown that brief, intense exercise (even just 13 minutes per day!) can offset the destructive influence stress has on your body. Remember that next time you swear life is too crazy to find time for yourself.

If you decide to continue caregiving, incorporating some of the following options can help ease the burden and relieve some stress:

  • Ask for additional help from family members and/or friends.
  • Utilize an adult day care facility.
  • Hire a personal care assistant to help with bathing or hygiene, such as dealing with urinary and/or fecal incontinence.
  • Hire someone for companion care (or locate a volunteer).
  • Form a caregiver co-op (arrange with neighbors or friends in similar situations to help each other in exchange for a few hours off).
Need help finding resources? caring.com

Caregiving By The Numbers

65 million: (nearly 30 percent of the U.S. population) people caring for a chronically ill, disabled or aged family member or friend, spending an average of 20 hours per week providing care for this loved one

7 out of 10: are taking care of loved ones over age 50

66: percentage of family caregivers who are women

20 hours per week: average time family caregivers spend caring for loved ones

47: percentage of working caregivers whose caregiving expenses have caused them to use most or all of their savings

Sources: Caregiving in the United States, National Alliance for Caregiving in collaboration with AARP, Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving, National Alliance for Caregiving and Evercare

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