Care-giving: A Survival Guide

You have a full-time job, a spouse, kids, two mortgages, a car in the shop and a seat on the board of your favorite charity. Let’s face it, you’re an amazing juggler and always find a way to keep all the balls in the air. But you also constantly live in fear that one more item will get thrown into the mix than you can handle. You assure yourself that if it does, you’ll politely decline, hoping the requestor will understand how busy you are. But what if someone you love falls ill and requires constant care and supervision?

How will you heap that responsibility on top of the rest of your to-dos? That may sound like a worst-case scenario, but for millions, it’s reality. “Within the United States, there are more than 50 million caregivers for everyone from special-needs kids to the elderly,” says Deborah Halpern, communications director of the National Family Caregivers Association (NFCA). “And these caregivers provide over $375 billion annually in free services and provide more than 80 percent of all long-term care in the U.S.”

Halpern suggests caregivers keep in mind the following four messages from the NFCA.

 
Unknown Heroes
Just who are these helpful souls? Often, they themselves don’t even know. “The biggest problem caregivers face is that they don’t identify themselves as caregivers,” Halpern says. “They simply see themselves as a loving mother, a caring daughter or someone who said ‘for better or for worse,’ and now it’s worse.”

In reality, she defines a family caregiver as anyone who is caring for a loved one who is chronically ill, disabled or elderly and requires assistance with the activities of daily living. Generally, family caregivers are not paid for their services and those services last for long stretches—typically two years or more.

“While many family caregivers may be living with the loved one they are caring for, family caregiving also includes those caring for loved ones who choose to remain in their own homes, or in assisted living or nursing homes, or even long-distance caregiving that requires constant phone contact and frequent trips to visit their loved ones,” Halpern says.

Because anyone can end up in this position, and without warning, Halpern suggests caregivers keep in mind the following four messages from the NFCA:

Message 1: BELIEVE IN YOURSELF

THE CHALLENGE: Your incapacitated loved one’s doctor mentions an experimental procedure that has a chance of slowing the disease progression, but it’s not without risks. You’re unsure how to proceed, and you’re afraid of making the wrong choice.

YOUR STRATEGY: As a caregiver, you likely will face tough decisions, but you don’t have to face them alone. Take time to educate yourself about the nature of the disease or disability with which you are dealing. If you don’t understand information a physician is giving you, ask him or her to explain it until you do. “And always ask for a resource to consult later, when you’re bound to have more questions,” Halpern suggests.

Have a third-party help you weigh the pros and cons when making choices about how to manage the care of your loved one. This objective view can help alleviate the pressure of an already stressful situation. The NFCA also suggests planning for difficult decisions that may lie ahead. Now is the time to discuss a living will and medical power of attorney.

SURVIVAL TIP: When in a physician’s office, position yourself between the doctor and the door, Halpern suggests. This means the doctor will have to walk past you before exiting, giving you another chance to ask questions.

Message 2: PROTECT YOUR HEALTH
THE CHALLENGE: It has been weeks since you’ve had a moment to yourself. You aren’t eating right, you haven’t been getting enough sleep, and you’re neglecting other responsibilities. The worst part is, you feel guilty for wanting a break.

YOUR STRATEGY: It’s common to become so wrapped up in caring for your loved one that you disregard your own needs. But when it happens more frequently than not, you need to reassess your caregiving strategy.

“If you don’t care for yourself, who will be there to care for your loved one?” asks Halpern, noting that while caregiving may seem like a 24/7 job, it doesn’t have to be. “It’s a responsibility to care for yourself, not a luxury.”

The NFCA’s brochure “The Best Present You Can Give Your Loved One: Your Own Good Health” offers the following tips to protect your health:  Take a daily vitamin supplement, brush and floss your teeth every day, exercise a few times a week, get away from your caregiving to have fun at least once a month, add spirituality to your life, get an annual flu shot, and have a yearly physical.

SURVIVAL TIP: When it comes to taking care of yours truly, the NFCA suggests you have a heart-to-heart with your loved one about your own well-being. Chances are, your loved one worries about your health as much as you worry about his or hers.

Message 3: REACH OUT FOR HELP
THE CHALLENGE: You’re pretty sure that if you could just find someone, somewhere, sometime to lend a hand, you’d feel much better. But your friends and family are busy with their own lives, so you hate to ask.

YOUR STRATEGY: One truly is the loneliest number. “Caregiving is not a one-person job,” Halpern says. Therefore, she suggests holding a conference with the people closest to your loved one and, as a group, making a care plan and divvying up responsibilities. If there aren’t close friends and family to rely on, ask others to help. Perhaps there’s a cook your loved one knows from church who can provide meals once in a while or a nurse you know from the PTA you could tap with medical questions and advice.

When you aren’t overwhelmed with your duties, you probably will find your role gratifying. “Caregiving is not just a depressing responsibility,” Halpern says. “Caregivers often say it enhances their lives, and the relationships with their loved ones are stronger than they would have otherwise been.”

SURVIVAL TIP: The NFCA recommends joining a support group or finding another caregiver with whom you can talk. Knowing you’re not alone can provide great reassurance. In addition to emotional support, you can compare practical tips and resources.

Message 4: SPEAK UP FOR YOUR RIGHTS
THE CHALLENGE: You feel helpless and hopeless—your loved one’s healthcare team isn’t being responsive to your needs and you’re in the dark about your options.

YOUR STRATEGY: The NFCA encourages you to become an effective advocate for your loved one as well as yourself. This is the first step in making your life more manageable.

“Once someone identifies themselves as a family caregiver, they are empowered to treat it as a job and they give better care as a result,” Halpern says. “So speak up for your loved one, for yourself and for all family caregivers.” When it comes to acquiring necessary information, be proactive, creative and resourceful.

SURVIVAL TIP: To better communicate with your loved one’s medical team, try the following NFCA tips: Write questions down so you don’t forget them, recognize that not all questions have answers, and if you have a lot to discuss, schedule a consultation appointment to ensure you’ll have enough time with the practitioner.

Seek Support
If you’re looking for a way to connect with other caregivers to share resources or seek guidance, visit the National Family Caregivers Association’s website at thefamilycaregiver.org. Click “Connecting Caregivers” in the upper left-hand corner.

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