Caregiving Support and Help
Tips for Making Family Caregiving Easier and More Rewarding
A look at family caregiving
Providing care for a family member in need is an act of kindness, love, and loyalty. And as life expectancies increase, medical treatments advance, and increasing numbers of people live with chronic illness and disabilities, more and more of us will participate in the caregiving process.
There are many different types of family caregiver situations. You may be taking care of an aging parent or a handicapped spouse. Or perhaps you’re caring for a child with a physical or mental illness. Regardless of your particular circumstances, you’re facing a challenging new role.
If you’re like most family caregivers, you aren’t trained for the responsibilities you now face. And you probably never anticipated you’d be in this situation. You may not even live very close to your loved one. At the same time, you love your family member and want to provide the best care you can. The good news is that you don’t have to be a nursing expert, a superhero, or a saint in order to be a good caregiver. With the right help and support, you can be an effective, loving caregiver without having to sacrifice yourself in the process.
New to family caregiving?
- Learn as much as you can about your family member’s illness or disability and about how to be a caregiver. The more you know, the less anxiety you’ll feel about your new role and the more effective you’ll be.
- Seek out other caregivers. It helps to know you’re not alone. It’s comforting to give and receive support from others who understand what you’re going through.
- Trust your instincts. Remember, you know your family member best. Don’t ignore what doctors and specialists tell you, but listen to your gut, too.
- Encourage your loved one’s independence. Caregiving does not mean doing everything for your loved one. Be open to technologies and strategies that allow your family member to be as independent as possible.
- Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to doctors, family members, and other people involved.
Family caregiving tip 1: Accept your feelings
Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It’s important to acknowledge and accept what you’re feeling, both good and bad. Don’t beat yourself up over your doubts and misgivings. These feelings don’t mean that you don’t love your family member—they simply mean you’re human.
What you may feel about being a family caregiver
- Anxiety and worry – You may worry about how you will handle the additional responsibilities of caregiving and what will happen to your family member if something happens to you. You may also fear what will happen in the future as your loved one’s illness progresses.
- Anger or resentment – You may feel angry or resentful toward the person you’re caring for, even though you know it’s irrational. Or you might be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
- Guilt – You may feel guilty for not doing more, being a “better” caregiver, having more patience, accepting your situation with more equanimity, or in the case of long distance caregiving, not being available more often.
- Grief – There are many losses that can come with caregiving (the healthy future you envisioned with your spouse or child; the goals and dreams you’ve had to set aside). If the person you’re caring for is terminally ill, you’re also dealing with that grief.
Even when you understand why you’re feeling the way you do, it can still be upsetting. In order to deal with your feelings, it’s important to talk about them. Don’t keep your emotions bottled up, but find at least one person you trust to confide in.
Places you can turn for caregiver support include:
- Family members or friends who will listen without judgment
- Your church, temple, or other place of worship
- Caregiver support groups at a local hospital or online
- A therapist, social worker, or counselor
- National caregiver organizations
- Organizations specific to your family member’s illness or disability
Family caregiving tip 2: Don’t try to do it all
Even if you’re the primary family caregiver, you can’t do everything on your own, especially if you’re caregiving from a distance (more than an hour’s drive from your family member). You’ll need help from friends, siblings, and other family members, as well as health professionals. If you don’t get the support you need, you’ll quickly burn out—which will compromise your ability to provide care.
But before you can ask for help, you need to have a clear understanding of your family member’s needs. Take some time to list all the caregiving tasks required, being as specific as possible. Then determine which activities you are able to meet (be realistic about your capabilities and time). The remaining tasks on the list are ones you’ll need to ask others to help you with.
Asking family and friends for help
It’s not always easy to ask for help, even when you desperately need it. Perhaps you’re afraid to impose on others or worried that your request will be resented or rejected. But if you simply make your needs known, you may be pleasantly surprised by the willingness of others to pitch in. Many times, friends and family members want to help, but don’t know how. Make it easier for them:
- Set aside one-on-one time to talk to the person
- Go over the list of caregiving needs you previously drew up
- Point out areas in which they might be of service (maybe your brother is good at Internet research, or your friend is a financial whiz)
- Ask the person if they’d like to help, and if so, in what way
- Make sure the person understands what would be most helpful to both you and the caregiving recipient
Family caregiving tip 3: Attend to your own needs
Pablo Casals, the world-renowned cellist, said, “The capacity to care is the thing that gives life its deepest significance and meaning.” It’s essential that you receive the support you need, so you can maintain that capacity to care.
When done in the right way, caring for a loved one can bring pleasure—to both you, the caregiver, and to the person you’re caring for. Being calm and relaxed and taking the time each day to really connect with the person you’re caring for can release hormones that boost your mood, reduce stress, and trigger biological changes that improve your physical health. And it has the same effect on your loved one, too.
Even if the person you’re caring for can no longer communicate verbally, it’s important to take a short time to focus fully on him or her. Avoid all distractions—such as the TV, cell phone, and computer—make eye contact (if that’s possible), hold the person’s hand or stroke his or her cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll experience a process that lowers stress and supports physical and emotional well-being—for both of you—and you’ll experience the “deepest significance and meaning” that Casals talks about.
Of course, if you’re distracted, burned out, or otherwise overwhelmed by the daily grind of caregiving, you’ll likely find such connection difficult. That’s why it’s vital that while you’re caring for your loved one, you don’t forget about your own needs. Caregivers need care, too.
Emotional needs of family caregivers
- Take time to relax daily and learn how to regulate yourself and de-stress when you start to feel overwhelmed. As explained above, one way to do that is by really connecting with the person you’re caring for. If that isn’t possible, employ your senses to effectively relieve stress in the moment and return yourself to a balanced state.
- Talk with someone to make sense of your situation and your feelings. There’s no better way of relieving stress than spending time face-to-face with someone who cares about you.
- Keep a journal. Some people find it helpful to write down their thoughts and feelings to help them see things more clearly.
- Feed your spirit. Pray, meditate, or do another activity that makes you feel part of something greater. Try to find meaning in both your life and in your role as a caregiver.
- Watch out for signs of depression, anxiety, or burnout and get professional help if needed.
Social and recreational needs of family caregivers
- Stay social. Make it a priority to visit regularly with other people. Nurture your close relationships. Don’t let yourself become isolated.
- Do things you enjoy. Laughter and joy can help keep you going when you face trials, stress, and pain.
- Maintain balance in your life. Don’t give up activities that are important to you, such as your work or your hobbies.
- Give yourself a break. Take regular breaks from caregiving, and give yourself an extended break at least once a week.
- Find a community. Join or reestablish your connection to a religious group, social club, or civic organization. The broader your support network, the better.
Physical needs of family caregivers
- Exercise regularly. Try to get in at least 30 minutes of exercise, three times per week. Exercise is a great way to relieve stress and boost your energy. So get moving, even if you’re tired.
- Eat right. Well-nourished bodies are better prepared to cope with stress and get through busy days. Keep your energy up and your mind clear by eating nutritious meals at regular times throughout the day.
- Avoid alcohol and drugs. It can be tempting to turn to substances for escape when life feels overwhelming, but they can easily compromise the quality of your caregiving. Instead, try dealing with problems head on and with a clear mind.
- Get enough sleep. Aim for an average of eight hours of solid, uninterrupted sleep every night. Otherwise, your energy level, productivity, and ability to handle stress will suffer.
- Keep up with your own health care. Go to the doctor and dentist on schedule, and keep up with your own prescriptions or medical therapy. As a caregiver, you need to stay as strong and healthy as possible.
Family caregiving tip 4: Take advantage of community services
There are services to help caregivers in most communities. Depending on where you live, the cost may be based on ability to pay or covered by the care receiver’s insurance. Services that may be available in your community include adult day care centers, home health aides, home-delivered meals, respite care, transportation services, and skilled nursing.
- Caregiver services in your community. Call your local senior center, county information and referral service, family services, or hospital social work unit for contact suggestions. Advocacy groups for the disorder your loved one’s suffering from may also be able to recommend local services. In the U.S., contact your local Area Agency on Aging for help with caring for older family members.
- Caregiver support for veterans. If your care recipient is a veteran in the U.S., home health care coverage, financial support, nursing home care, and adult day care benefits may be available. Some Veterans Administration programs are free, while others require co-payments, depending upon the veteran’s status, income, and other criteria.
- Your family member’s affiliations. Fraternal organizations such as the Elks, Eagles, or Moose lodges may offer some assistance if your loved one is a longtime dues-paying member. This help may take the form of phone check-ins, home visits, or transportation.
- Community transportation services. Many communities offer free or low-cost transportation services for trips to and from medical appointments, day care, senior centers, and shopping malls.
- Adult day care. If your senior loved one is well enough, consider the possibility of adult day care. An adult day care center can provide you with needed breaks during the day or week, and your loved one with some valuable diversions and activities.
- Personal care services. Help with activities of daily living, such as dressing, bathing, feeding, or meal preparation may be provided by home care aides, hired companions, certified nurse’s aides, or home health aides. Home health aides might also provide limited assistance with things such as taking blood pressure or offering medication reminders.
- Health care services. Some health care services can be provided at home by trained professionals such as physical or occupational therapists, social workers, or home health nurses. Check with your insurance or health service to see what kind of coverage is available. Hospice care can also be provided at home.
- Meal programs. Your loved one may be eligible to have hot meals delivered at home by a Meals on Wheels program. Religious and other local organizations sometimes offer free lunches and companionship for the sick and elderly. Contact your local senior center or see the Resources section below for useful links.
Family caregiving tip 5: Provide long distance care
Many people take on the role of designated caregiver for a family member—often an older relative or sibling—while living more than an hour’s travel away. Trying to manage a loved one’s care from a distance can add to feelings of guilt and anxiety and present many other obstacles. But there are steps you can take to prepare for caregiving emergencies and ease the burden of responsibility.
- Set up an alarm system for your loved one. Because of the distance between you, you won’t be able to respond in time to a life-threatening emergency, so subscribe to an electronic alert system. Your loved one wears the small device and can use it to summon immediate help.
- Manage doctor and medical appointments. Try to schedule all medical appointments together, at a time when you’ll be in the area. Make the time to get to know your loved one’s doctors and arrange to be kept up-to-date on all medical issues via the phone when you’re not in the area. Your relative may need to sign a privacy release to enable their doctors to do this.
- Use a case manager. Some hospitals or insurance plans can assign case managers to coordinate your loved one’s care, monitor his or her progress, manage billing, and communicate with the family.
- Investigate local services. When you’re not there, try to find local services that can offer home help services, deliver meals, or provide local transportation for your loved one. A geriatric care manager can offer a variety of services to long-distance caregivers, including providing and monitoring in-home help for your relative.
- Schedule regular communication with your loved one. A daily email, text message, or quick phone call can let your relative know that they’re not forgotten and give you peace of mind.
- Arrange telephone check-ins from a local religious group, senior center, or other public or nonprofit organization. These services offer prescheduled calls to homebound older adults to reduce their isolation and monitor their well-being.