Tips for health and sanity that every caregiver needs

Home For The Aged

If it seems we are facing an epidemic of parent care and spousal care needs, it’s true. We are.

You’ve probably heard the statistic that approximately 10,000 baby boomers reach age 65 every day. And with that milestone, age-related diseases such as Alzheimer’s, stroke, heart disease and other conditions occur more frequently. This means that many people in this age group are stepping up to help a parent or a chronically ill spouse, friend or relative in need.

Almost everyone would agree that lending a hand to help a family member or someone else in need is the right thing to do. But is there a price that we pay for doing so Studies document that in many situations, caregivers put their own health at risk when they take on care for someone else.

Today, medical advances, shorter hospital stays, limited discharge planning, and expansion of home care technologies have placed increased costs as well as increased care responsibilities on families. Caregivers are being asked to do medical tasks formerly managed in the hospital, and to provide care for longer periods of time. Those who leave the workforce to assume full-time care will forego earnings, have reduced Social Security benefits and may also lose access to employer paid health insurance. These burdens and health risks can hinder caregivers’ ability to provide care, lead to higher health care costs and affect the quality of life of both caregivers and care recipient.

Effects of caregiving on health and well-being

Researchers continue to study the possible negative effects of caregiving on health and well-being. We know, for example, that spouses who provide care, who are between the ages of 66 and 96, and who are experiencing mental or emotional strain, have a 63 percent higher risk of dying than people the same age who are not caregivers. A combination of emotional loss, prolonged stress and the often-heavy physical demands of caregiving, along with age-related vulnerabilities — physical frailty, sensory impairment, health problems of the caregiver — can increase caregivers’ risk for earlier death.

For adult children, caring for a parent, spouse, partner or other relative while also juggling work, raising children and maintaining a relationship can contribute to an increased risk for depression, impaired immune system and likelihood for developing one or more chronic health conditions, such as hypertension, high blood pressure and/or high cholesterol.

Typically, we get involved in caregiving for another adult in one of two ways. When a crisis occurs, as it did in my family, we are called into action. When my dad suffered a debilitating stroke, I dropped everything — work, family responsibilities — and jumped on a plane to be by his side at the hospital. There, my siblings and I waited, hoping for the best. For those who survive such a health crisis, the challenge then becomes how to manage ongoing care, which begins immediately after discharge and can last for months and often years.

Another common path to caregiving occurs more subtly over time. My friend’s mother moved from another state into a local independent retirement community to be closer to her son. Over time, during their weekly grocery shopping trips and regular visits to the doctor, he started to notice she was having difficulty walking and had developed a tremor in her chin. She was diagnosed with Parkinson’s disease. When it was no longer safe for his mother to live independently, he and his wife decided to move his mom into their home, where they have progressively assumed full-time care for her.

The risks in long-term caregiving

Family and friends report having difficulty attending to their own health needs while managing care responsibilities for someone else. Here are a few of the common health risks for caregivers:

  • Sleep deprivation
  • Poor eating habits, with a tendency toward prepared foods high in fat and sodium
  • Failure to exercise or having far less time to exercise
  • Unable to stay in bed to recuperate if they are ill
  • Depression
  • No time to keep their own medical or health appointments
  • No time for counseling to deal with the stress
  • Compounding these serious concerns are negative messages we tell ourselves. Here are a few that we hear often from caregivers:

  • There is no one else. I have to do it all.
  • I can’t seem to do anything right.
  • How can I justify taking a break when it’s my spouse who is suffering from this awful disease?
  • I don’t want to burden my children, they have enough on their plates to worry about.
  • Complaining is a sign of weakness. Others have it worse that I do.
  • Our family always takes care of our own, so I have to figure out how to make that happen.
  • Caregiving can be an emotional roller coaster. On the one hand, caring for a family member demonstrates love, commitment and can be a very rewarding experience. On the other hand, exhaustion, worry, inadequate resources (money, time, support services in the community), dysfunctional families and seemingly never-ending care demands can leave you feeling overwhelmed and without hope for a reasonably healthy caregiving experience.

    How can you gain control over your situation?

    You can’t stop the deterioration caused by a progressive chronic illness such as Alzheimer’s or Parkinson’s disease, nor reverse a debilitating injury. Your job is to help the person you care for feel comfortable and safe, see that he or she gets good medical and health care, and try to provide emotional, social and physical support as much as you are able.

    But at the same time, you can work to remove personal barriers to your own self-care. It’s not easy, it takes time — and it is critical. The message here is that you can take control of your own health so you don’t also end up as a patient yourself.

    Here are a few questions to think about to help you start the process:

  • What role do you play in your family or community? How important is it for you to be healthy so that you can carry out your community responsibilities?
  • When someone tells you that you aren’t doing enough, or are not performing your duties in the right way, how do you assess objectively if the concern is valid or not?
  • Do you do too much to prove that you are worthy of the care recipient’s affection or in the hope of repairing a historically fractured relationship?
  • If you ended up incapacitated or in the hospital, who would assume your caregiving responsibilities?
  • If someone offers their help, can you say “yes”? What care tasks are on your “to do” list that someone else could take on?
  • If you could redesign your caregiving situation, what would it look like? Are there one or two steps you can take toward a healthier caregiving situation? Try reading the Caregiver’s Pledge if this last question is difficult to answer.
  • It is not selfish for a spouse, adult child or partner to focus on their own needs and desires when caregiving. In fact, it is an important part of the job. In another column, we will talk about the specific strategies grounded in science for reducing stress and promoting health for family and friends who care. For now, though, these tips can help to get you started:

  • Take a break from caregiving. Make a date to go to the movies, take a walk, meet a friend for lunch. Everyone needs to get out of the house once in a while. Do something not related to caregiving.
  • Get support. Attend a support group, have a friend you can call just to let off steam and complain. Depression is treatable. Talk to your doctor about it. Or seek counseling.
  • Practice communication and behavior management skills if you are caring for someone with dementia. This will make your job easier. Learn how to do this by taking a class or reading how to online. The right way is not intuitive.
  • Relax. Read a book, meditate, pray, garden, knit, get a massage, take a long bath.
  • Take care of your health. Go to the doctor, get routine exams and flu shots, get enough sleep and eat your fruits and vegetables.
  • Change “guilt” to “regret.” Guilt is you did something wrong, regret is that you are in a difficult situation and sometimes you have to make difficult decisions, but they are not wrong.
  • Forgive yourself — often. You cannot be a perfect caregiver, all day, every day.
  • Laugh. Find ways to keep your sense of humor by sharing a silly story with a friend, watching a funny show or movie, or joining a group to try laughter yoga exercises.
  • Exercise. Walk around the neighborhood. Or even better, recruit a friend to walk with you. Sign up for an online or in-person yoga class. Join a Zumba class or line dancing class.
  • Ask for and accept help when offered. No one can do this alone.

  • More Information & Resources

    ARCH National Respite Network: Online Respite Locator is a service to help families and professionals locate respite services in their community from a database of nearly 3,000 members.

    Powerful Tools for Caregivers: A self-care education program for family caregivers.

    Veteran’s Administration Caregiver Support: Programs are available to help support family caregivers who care for a veteran.

    Long-Term Care Options Explored on PBS NewsHour:

    More Helpful Publications from Family Caregiver Alliance:

    About Family Caregiver Alliance

    Family Caregiver Alliance
    National Center on Caregiving
    785 Market Street, Suite 750
    San Francisco, CA 94103
    (415) 434-3388
    (800) 445-8106

    Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.

    Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.

    Leah Eskenazi, MSW, is Director of Planning and Operations for Family Caregiver Alliance, based in San Francisco, California.

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