If a family member or friend has a serious medical illness or procedure, you may be called on to provide care after your loved one leaves the hospital, emergency room or doctor’s office. Assisting with their health care needs frequently falls on untrained family members or friends.
Most first-time family caregivers learn what caregiving is like “on the job” and often discover numerous challenges they could not have imagined before they signed on.
Currently, there are about 65.7 million caregivers in the U.S. and the number is growing.
This increasing network of family caregivers find themselves assisting their loved ones with various daily tasks, from running errands, to helping pay bills, reviewing medications with their physicians or actual medical tasks like wound care or taking blood pressure.
Challenges You May Face
No matter how long or how often you are called upon to help, you’ll likely find that caregiving has ups and downs.
Keep in mind:
- Taking care of someone can be physically and emotionally exhausting. It can impact your time, energy and financial resources.
- It can drastically change your lifestyle and your home environment—especially if you are providing care in your home.
Constance Adampoulos of San Francisco was a caregiver of two family members. At one point she took care of both her mother and uncle at the same time in her home. “You don’t get a manual when you become a family caregiver,” she said.
Over time, she learned to ask for help. “Most of us aren’t trained to be caregivers so we don’t know how and when to slow down, step back and share the responsibilities. My advice—don’t try to do it all alone.”
Dexanne B. Clohan, M.D., Senior Vice President and Chief Medical Officer at HealthSouth, a group of patient-focused rehabilitation hospitals in Birmingham, Alabama, added, “Just because you’re not punching a clock like a ‘regular’ job– the job of caregiving is essentially constant, you need breaks that replenish you so you can keep yourself going.”
For more insight on the challenges ahead, visit Family Caregiver Alliance at caregiver.org
The National Institutes of Health provides this helpful directory of online resources for family caregivers of various types.
Dealing with Frustration and Stress
There is a myth that loving a patient will be enough to ward off any frustration or resentment. But Clohan explained, “The caregiver needs to be realistic and get some help—for everybody’s well being.”
You might think that caregivers are asked how they feel about taking on the job of caregiving, but many are not asked; it’s just assumed they will take on the job. That carefree approach can be fraught with stress not only for the caregiver, but also for the patient and other family members who may have to step in quickly and take over.
Gail Hunt, president/CEO of National Alliance for Caregiving, Bethesda, Maryland (caregiving.org), adds “Not everyone takes time to ask if a family member is willing to perform necessary tasks like moving a spouse in and out of the bath tub or the car or even if they can carry out a daily caregiving routine because of their own health issues.”
Understanding the risks of caregiving can help minimize stress and maximize the rewards associated with your job.
A caregiver risks:
- Feeling lonely and isolated
- Feeling worried about your own health
- Feeling stressed about losing your ‘day-job’ and personal relationships
- Feeling resentful because you didn’t choose to be a caregiver
Hunt said 60 percent of family caregivers also work full-time. “They may have to pass up promotions at work, face lost wages and Social Security benefits, take a leave from their job and pay for things the patient needs out of their own pocket.”
Surprisingly, research has shown that caregivers tend to feel positive about the experience and in fact, they say it helps them feel closer to the person in their care.
But Hunt added, “If a person feels they didn’t have a choice about being a caregiver, they are more at risk for feeling anxious and stressed.”
Adampoulous agreed. “When you take care of another person it’s easy to feel a lot of animosity because you didn’t sign up for the job. Yet there you are trying to help but wearing yourself out because you don’t know how to be helpful.”
You can read more about other people’s experience with caregiving at Today’s Caregiver (www.caregiving.com)
Avoid Feeling “Home-Alone”
Adampoulos said she felt fragmented and she began “losing things.” “I spent a lot of time caregiving along with trying to run a business and being a wife and mother, but things started falling apart.”
She found she was losing connections with friends because she felt tethered to the house.
Eventually, her marriage broke up. “It wasn’t my husband’s family—it was my family I was caring for,” she said. “That’s something to consider when you’re in a relationship and you become a caregiver.”
Check out the National Family Caregivers Association for useful information on managing caregiving and your life at nfcacares.org
Don’t Lose Perspective—Reach Out
- To caregiving resources so you can alleviate stress and gain valuable insight and support
- To friends who can help you feel refreshed and connected to the world around you
- To new ideas and possibilities for making caregiving less overwhelming
- To opportunities for making new friends
- Reach out and learn from other caregivers. This website features caregivers asking questions and helping each other. http://www.caregiving.com/learn/faqs/
Modifying Your Home
If you live with the people you are caring for, you may have to modify your home to fit their health and mobility needs.
Adampoulos built an apartment in her garage with an oversized bath so the space could accommodate her mother. She converted her dining room into a hospital room with a hospital bed and oxygen for her uncle. Insurance covered some costs but not all. Check with your loved ones’ insurance provider for more information about coverage for home health materials.
Time Out from Caregiving
Many people find that they need to hire an individual or a community resource to come in and give the caregiver relief, Adampoulos engaged a woman to help with household projects, and the same person provided relief so she could keep up with some outside commitments. A change occurred when her mother’s doctor suggested the family talk with a social worker. “That person guided me to the National Center on Caregiving’s Family Caregiver Alliance in San Francisco and that changed my life.”
She participated in 13 free one-one-therapy sessions for caregiving support and also attended the organization’s “Caregiver’s Boot Camp.” Caregiving support groups can teach you:
- How to slow down and stop trying so hard to be “everything to everyone.”
- How to take good care of yourself
- How to set limits and ask for help
- How to overcome feeling anxious, scared, overwhelmed and feeling all alone.
The AARP provides information about finding caregiving support.
Follow a Plan of Care
If your loved one is in the hospital, you’ll benefit from putting your caregiver’s hat on right away by being present for all discussions about discharge and follow-up care. The Centers for Medicare and Medicaid Services also has planning practices in place at hospitals to help families when a loved one is being discharged.
Hunt explained, “Before the patient is discharged, the hospital has to very clear with the patient’s caregiver about the patient’s plan of care.” Several issues like medications, follow-up appointments and transportation. If a patient can’t get to their appointments, they won’t be able to keep up with the intended plan of care.”
Even though caregivers implement many family planning decisions, it’s not uncommon for physicians to just talk to the patient about key issues.
Hunt said, “Family caregivers are often excluded from the conversation, but they absolutely need to be included. They are on the front line of what is expected at home.”
A Balanced Life
How do you take better care of yourself while caregiving?
- Balance the demands of caregiving with reading, exercise and taking breaks.
- Set a timer for blocks of time like 30-minute intervals to read, take a walk, journal, and poke around your garden or sit on the porch and do nothing.
- Go easy on overindulging in food or Internet shopping and stay socially engaged. Clohan said, “Don’t cut yourself off from social activities. Perhaps the best skill a caregiver can learn is how to let friends help you. When someone says they wish they could help, be specific. Tell them you need to run an errand and would like them to come by and stay with your loved one for a short time.”
- Maintain a healthy lifestyle. Regular trips to the gym can be unrealistic during a home vigil, but Clohan suggested this. “Exercise in small bits because it adds up. Put on music, grab a soup can in each hand, dance around to get your heart rate up and have a bit of fun.”
- Tell friends when you’re available for a chat. “Put your phone number in your notes and make specific suggestions,” said Clohan. “You might say the nights are quiet now that your loved one rests so much and you’d love to chat if they could call you after 8 p.m. It’s amazing how simple, specific suggestions can help keep personal communications going.”
Original post by the Center for Advancing Health. Updated by the GW Cancer Institute January 2016.