Cut Out for Caregiving?

The Right Plan Can Allay Fears About Caring for a Loved One

Caregiving Paper Dolls

Whether you’ve been a caregiver for three days or three years, chances are you didn’t plan for it, and you might be wondering if you’re cut out for the job. The lack of confidence might stem from a very real lack of education for caregivers.

Despite the lack of education, many of us at one time in our lives will be faced with the formidable task of caring for an elderly parent, a spouse or a child with an illness or disability. In fact, the National Alliance for Caregiving reported that in 2009 there were 65.7 million caregivers, which accounted for 29 percent of the U.S. adult population.

No matter where you’re at on your caregiving journey, you’re probably bursting with emotions, fears and a burning question: Where do I go from here? Follow these five steps to get on the road to success and become the best caregiver you can be.

Step 1: Acknowledge and Address Your Emotions

Often, the path to caregiving has an influence on what you’re feeling from day to day.

For example, Leah Eskenazi, director of operations and planning at Family Caregiver Alliance in San Francisco, Calif., says that a person becomes a caregiver in one of two ways. A person can become a caregiver immediately as a result of a crisis such as a stroke, traumatic brain injury, car accident or combat wound. Or, as is the case with amyotrophic lateral sclerosis (ALS), a person might have a bit more warning and slowly assume responsibilities over time.

“So in terms of the common emotions, there’s a timeline,” Eskenazi says.

In many ways, the crisis caregiver has delayed emotions, whereas the slower progressing caregiver has time to build up emotions. Either way, Eskenazi says the emotions are very similar: feeling scared, overwhelmed, powerless and often isolated.

Sometimes a prevailing emotion is guilt. “That guilt is often, ‘I’m well, and the person I’m caring for is not well. And I should feel guilty about even thinking about taking care of myself. Or life isn’t fair. How is it that I’m doing okay, and they’re not doing okay? And how do I make it feel better?’” Eskenazi says.

However, over time the emotions can change, especially as caregivers figure out how to provide good care and how to make time for themselves. Eskenazi says confidence leads to feeling more balanced, and that balance is key to improving some of the more negative emotions. Balance can also lead caregivers to experience positive emotions about caregiving.

“Some of those emotions can also be gratitude and a sense of satisfaction [at] being able to help,” Eskenazi says. “People feel grateful that they are learning to be less selfish and they can take care of somebody else. They can feel more love because now maybe somebody who’s been more remote, now they have the opportunity to show them more love because the care recipient will let them help them.”

In addition, caregiving can enable people to mend relationships and learn patience and how to listen.

“The caregiver may find that maybe they had never planned to be a caregiver, but they find that they’re really good at it,” Eskenazi says. “And they experience a lot of love and joy through the care that they’re providing. And it might actually open up a new learning about themselves.”

Step 2: Find the Answers to Your Questions

Do any of these questions sound familiar: What do I need to do? How do I do it? Do I have enough time to do everything? Am I doing a good job? Is the person I’m caring for safe?

Cynthia Knoche, director of Chapter Care Services for the ALS Association, says that many caregivers have these questions, but gathering information is a good way to gain confidence.

“Get as much information about specific care activities as you can. This includes learning about tools, techniques and equipment valuable to both caregiver and care recipient,” she says. “Investigate insurance and other benefits for which you or your loved one may be eligible… The more you know, the better prepared you will be in proving care and support”

In fact, information is one of the three basic steps for caregivers that the Family Caregiver Alliance refers to as IRS: information, respite and support.

The information you’ll need includes education about the condition or disease and about the transition from hospital, rehab center or nursing home to the home environment. Eskenazi says that getting the right information for that transition could be a problem for some.

“That education is very, very weak for caregivers,” Eskenazi says. “Maybe they’re supposed to give somebody a bath, maybe they’re supposed to help somebody carry out their exercises, maybe they’re doing wound care—a whole variety of things that they might be carrying out, and right now their education is not very good. No wonder caregivers feel kind of shell shocked sometimes. When they get home and all of a sudden the professionals leave, and it’s like, ‘Oh my gosh, what do I do now?’ ”

The number one thing that Eskenazi wants caregivers to understand, regardless of those overwhelming feelings is that, “You are not alone. There are resources to help.”

The first people you’ll want to consult are your healthcare team members, the ones who have already been standing by your side to provide care. Knoche explains that by keeping the communication flowing, you’ll be able to get referrals for local, regional and online caregiver resources. The team might also put you in contact with education, networking, connection or support groups, especially related to your specific condition, such as ALS.

In addition, disease or condition information is readily available at the click of a mouse, although the sheer volume of information might be a bit overwhelming. Eskenazi recommends reaching out to national organizations such as the ALS Association and the Multiple Sclerosis Society or Veterans Affairs, all of which can give you an overview of what to expect and some tips for caregiving. In addition, organizations that focus on caregiving, such as the Family Caregiver Alliance, can be a great resource and can help steer you in the right direction on your quest for answers.

Step 3: Get Help

Support is the third letter in the Family Caregiver Alliance’s IRS of caregiving, and there’s a reason for that. So many times caregivers feel like they have to do everything on their own; they don’t realize that people are available to help.

Knoche pleads with caregivers to ask for assistance. “Recognize that many friends and family want to help,” she says. “Accept their efforts to assist as needed.”

Realistically, nobody can provide care 24 hours a day, seven days a week, explains Eskenazi. So caregivers must set up a system with family and friends or a formal system to allow themselves a break.

Eskenazi acknowledges that caregiving can be very lonely, especially for younger caregivers who might find it hard to relate to their friends after a traumatic event.

“A woman who may be used to going out once a month with her women friends for dinner, now she can’t do that because she’s caring for her husband who was in a car accident and now has a TBI and maybe lost a limb or has a severe injury where she has to help him with transferring,” Eskenazi says. “She might not feel like she has anything in common anymore. And there, all of a sudden, goes her support group, her network of friends. Who does she turn to?”

While Eskenazi encourages people to maintain these important relationships, she also says support groups for people with similar conditions can really help caregivers find someone who understands what they’re going through.

And if none of these options sound appealing, therapists, counselors and pastors are also great resources for finding someone to talk to.

While you might feel that you shouldn’t ask for help for yourself, both Knoche and Eskenazi say that isn’t a good plan.

“Caregivers who share resources and their own personal experiences report less stress and fewer problems,” says Knoche.

And that translates to better care and support for your care recipient.

Step 4: Make a Plan

“Initially, the unknown can set the stage for anxiety and frustration. As time unfolds, the value of strategic planning becomes apparent,” says Knoche. “Pace your caregiving efforts, and acknowledge the skills and time necessary to provide appropriate care. Caregiving is delivered and shared as a journey unfolds; adaptations and amendments are par for the course.”

Initially it might be wise to meet with someone such as Family Caregiver Alliance, a social worker or a VA representative who can help you develop a care plan.

Caring for ALS

Amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease presents some unique caregiving challenges because of its progressive nature.

“Those diagnosed with Lou Gehrig’s disease face ever increasing loss of motor control resulting in the inability to walk, talk, swallow or breathe,” says Knoche.

Because of those changes, caregivers will want to keep ahead of assistive technology that can help maintain quality of life, including power wheelchairs, communication devices and portable ventilators, Knoche explains.

All caregivers should be sure to take care of themselves, and those caring for people with ALS are no exception.

“Caregiving is often willingly undertaken out of love and devotion, but over time it exacts an emotional toll and can adversely affect the caregiver’s physical and psychological health,” Knoche says.

Among the things to consider are financial and estate planning, such as income considerations and who will do the bookkeeping.

Eskenazi says that some caregivers get into a situation in which their husbands were the ones who handled the finances and suddenly they have to figure out how to do it.

In addition, caregivers might need to consider housing, such as whether their current residence is capable of supporting mobility needs. Equipment might play a role, such as what adapted equipment can make transferring, toileting or dressing easier.

“What we try to do is make sure that the caregiver knows that there are resources to help them with some of that decision making,” Eskenazi says. For example, mobility equipment providers can do a home assessment to figure out just what equipment is needed.

Even with the best plans, however, you do want to build in some flexibility and roll with the punches as they say, especially if you’re caring for someone with ALS.

“Caregiving needs and methods change,” says Knoche. “Adaptations and adjustments will be necessary on the part of the care recipient and care provider as ALS progresses.”

Step 5: Take Care of Yourself

Although you might feel guilty taking care of yourself, this is one of the most vital steps to become the best caregiver, and is the R of the IRS of caregiving.

“As I always say, we don’t want two patients,” Eskenazi says. “We don’t want the caregiver to focus all of their energy and maybe feel so stressed out in caring for their loved one that they totally forget to take care of themselves and find themselves in hospital, which happens way too often.”

In addition to making a plan for caring for your loved one, you need to make a plan for caring for yourself.

Knoche and Eskenazi offer the following tips:

  • Keep your personal and family roles and relationships alive, recommends Knoche. If you typically have pasta dinners on Wednesday or watch football on Sunday, keep doing that. “Making the effort to retain the relationship you have had with your loved one aside from your role as caregiver will help you in coping with the addition of daily caregiving activities,” she says.
  • Set reasonable limits and expectations with your loved one, family and friends.
  • Find a way to de-stress. “Physical exercise, creative activities, and humor are simple and cost-effective strategies for countering caregiver stress,” Knoche says.
  • Make personal time nonnegotiable. “Schedule personal time—even if it has to be scheduled,” Knoche says. “Taking time for yourself is not selfish; it often improves your capacity to care for your loved one,” Knoche says.
  • Prioritize your own health, including exercising, eating well and getting enough sleep. “Make sure that they keep their medical and dental appointments,” Eskenazi says, whicht goes back to preventing two patients.
  • Take care of your emotion needs. Eskenazi says, “It’s okay for a caregiver to be happy.”

"It is not unusual for a caregiver to wake up one day and see themselves as more a caregiver than wife/husband/parent or child,” Knoche says. “Significant mobility challenges or a progressive illness rarely provide built-in time for respite or temporary refreshment and recovery; so caregivers must recognize the need to schedule time to restore themselves.”


The ALS Association
If you’re caring for someone with ALS, the ALS Association chapters are a great resource for disease-specific information, education, resource referrals and support. Tools such as Lotsa Helping Hands Web-based care calendar can help coordinate volunteers for respite care, and Chapter Care Service coordinators can provide one-on-one assistance.

Family Caregiver Alliance
Family Caregiver Alliance can meet with people local to the San Francisco Bay area in their homes, and the organization’s Web site is also a great tool for people across the country. Using Family Care Navigator, people can click on their state to find local resources. Those needing more information can dial the toll-free number. The organization also has various online discussion sites, including a group for LGBT caregivers and one for those caring for people with dementia.

National Alliance for Caregiving
The site offers updates on legislation, research and caregiver resources including a Family Care Resource Clearinghouse.

National Family Caregivers Association
The site provides various publications for caregivers, discussion groups, quick pick-me-ups and updates on advocacy issues.

VA Caregiver Support
Caring for a veteran just got a little easier thanks to this one-stop resource featuring medication logs, tips for preventing caregiver burnout, a caregiver toolbox and the option for e-mail updates.