With nearly one-third of the U.S. adult population providing medical care for a relative, the chances are good that you or someone you know is a family caregiver. The need to decide which relatives provide which caregiving roles can also place stress on extended families, particularly when family members are often spread far and wide and across multiple blended generations.
Fortunately, you can now turn to several excellent online resources, including the American Psychological Association's (APA) "Caregiver Briefcase." This briefcase addresses the challenges that caregivers encounter that can affect their own mental and physical health.
The APA report points out that most caregivers are female. This probably isn't a surprise. What many people don't know is that, nationwide, 1.3 to 1.4 million caregivers are children and teens between ages 8 and 18 years old. Many of these children care for a parent with a disability. You can get more detailed caregiver facts from the Family Caregivers Alliance, another excellent source of facts and helpful advice.
Although family caregivers might become very well trained to care for the specific needs of their particular relative's condition, they are not medical experts. This means that if something goes wrong, they may not have the background to make the most informed decisions. And unlike healthcare workers who are paid to provide treatment, many family caregivers work in 24-hour shifts.
The constant demands on their time and resources mean that family caregivers are at risk for experiencing what experts call "caregiver burden." Because they are under so much stress, family caregivers are at risk for developing their own physical and mental health problems, leading, potentially, to premature mortality. They also experience financial hardships due to the cost of medical care and, in cases of sudden disability, loss of a major wage-earner in the home. Middle-aged women who take on the caregiving role are also more likely to leave their own jobs, further compromising their financial situations.
Family caregivers are the lynchpin of the healthcare system. Without family caregivers, the medical costs of patients would rise even higher than they are now. The APA report cites the extensive evidence showing that family caregiving reduces hospital stays, Medicare inpatient expenditures, and costs of home health and nursing home care.
Despite this bleak picture of caregiving's burden, there is an upside. Caregivers may take pride in their ability to help their loved one. Adult children who become caregivers may feel that they are now returning the care they received from their parents when they were young. The caregiving experience may also give the individual a sense of meaning and purpose in life.
You might expect that the best way to cope with caregiving is to take a pragmatic, problem-focused approach to get the job done. However, caregivers seem to benefit more from reframing their stressful situation to put it in a positive light. They may rely on their spiritual beliefs to help them find meaning in their caregiving roles and activities.
Many experts recommend that caregivers join a support group. Caregivers may think that they can't afford the time to participate in one of these groups. However, joining such a group is probably the most consistent advice about alleviating caregiver burden you'll ever hear. Other people in your situation are perhaps the best able to provide you with support, not to mention practical advice. You may also be able to locate respite care during the time that you participate in a caregiver support group.
Taking care of yourself is an important component of successful caregiving. The National Institute on Aging (NIA)'s Caregiving Guide, a helpful resource for caregivers of Alzheimer's patients, devotes an entire section to self-care. Eating right, spending time with friends, getting exercise, and taking breaks will help caregivers maintain their own mental and physical health. You should feel it's okay to ask friends and family to pitch in when you feel overwhelmed.
All caregivers need to maintain their own emotional health or they'll be unable to continue in their demanding role. Psychologists know that coping "self-statements" can help lower stress in any situation. The NIA guide suggests certain phrases that caregivers can repeat to themselves when they're feeling particularly stressed, such as "I'm doing the best I can," "I can't control some things that just happen," and "Sometimes I just need to do what works for right now." The NIA guide also emphasizes the importance of getting support from other caregivers, even if it's in online form rather than in a face-to-face context.
Moving beyond caregivers of people with Alzheimer's disease, though, the APA caregiving briefcase addresses many types of caregiving situations. You can find where you fit into the spectrum of caregivers and check out resources specific to you and your loved one.
Whether or not you need these caregiving resources at the moment, it's important to know where to go to look for information if and when this happens to you. I'd also suggest passing these along to relatives who are caregivers now. These guides will help you and those in need of support.
To summarize, here are the top five tips from these caregiving resources:
1. Recognize how widespread caregiving situations are. Though everyone's situation is unique, you're not alone in experiencing burden.
2. Take advantage of support services. Sharing your experiences with others can give you both practical and emotional help.
3. Focus on positive coping strategies. Adapt the self-statements and coping strategies mentioned above until you find the ones that work for you.
4. Take care of your own needs. You need to focus on your health, both mental and physical, if you're going to be an effective caregiver. You'll also feel better.
5. Ask for help when you need it. You don't have to be a martyr. Reaching out to others will alleviate your stress. You may be surprised at the willingness of others to offer you assistance.
Caregiving is one of life's most stressful situations. Taking advantage of these excellent new resources can allow you, and caregivers you know, to achieve fulfillment in this challenging role.
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Copyright Susan Krauss Whitbourne, Ph.D. 2011