Disability, illness and old age have created approximately 25 million family caregivers who provide two-thirds of all in-home care in this country. The annual worth of the services they provide has been estimated at $300 billion dollars. Yet virtually all of these caregivers are unpaid, receive no vacations or benefits and can’t quit their jobs. And they have one of America’s most stressful occupations.
Two research projects that have looked at spinal cord injury survivors and their caregiving partners present contrasting pictures.
Over the past 10 years a longitudinal research study done by Craig Hospital in Denver indicates that caregiving spouses deal with substantially greater stress, depression and other negative symptoms than those not providing care. While the Craig study did not predict these negative outcomes, it clearly associated them with caregiving.
Another study, a survey recently conducted by the Paralyzed Veterans of America, suggests that most spouses of SCI survivors are proud of what they do and quite content doing it. The PVA survey is instructive, as it is one of the few research protocols that focused on the positive aspects of providing care, as well as the coping skills that make providing care easier and more a part of everyday life.
“[Caregivers] often pointed out the pleasure they derived from the ‘extra’ help that they provided their husband or wife,” reports David Gray, the survey’s principal investigator and a long-term spinal cord injury survivor. “A small number said the extra work was a burden. Many said the extra care did tire them out. But almost all said they did not want people outside the family helping their loved one.”
Together these two studies present a useful portrait of the dangers for family caregivers, but also proof that the problems needn’t be destructive. Although both focused on spinal cord injury, their findings should apply to people giving care to anyone with a disability or chronic illness.
During the six years I’ve been researching caregiving, I’ve talked to spouses and partners, sons and daughters, moms and dads. Many say that caregiving gives their lives meaning and purpose. Others say it has changed their lives for the worse and made their worlds smaller. Almost all say it’s very hard work.
If caregiving does result in negative consequences, they tend to fall into four broad areas: stress and emotional challenges, burnout or “role overload,” disrupted relationships and threatened health for the caregiver. This article draws on research from the broader caregiver population as well as those giving care to people with spinal cord injuries, and suggests practical solutions for caregivers who want to maintain a high quality of life while providing assistance to a family member.
Stress and Emotional Challenges
Caregivers often report anger at the unfairness of it all, frequently directing it at medical professionals and insurance or benefits representatives. Trust in the future falters, and they fear things will get worse. Some worry about who will care for them if they need help. There may be resentment over altered plans, dreams, lifestyle or standard of living. Many feel guilty for feeling any emotion other than compassion. Not surprisingly, depression is often the result.
The caregivers Craig studied reported stress, nervousness and feeling unable to cope. They exhibited common symptoms of depression–crying, feeling blue, sleeplessness, loss of appetite, a generally lower feeling of well-being and a sense of not having their own needs met. A National Family Caregiver Association survey, representing a much broader caregiver population, reports similar findings of frustration, sadness, anxiety, a sense of isolation, loss of personal time and, logically, depression.
Outside social contact is crucial, and more often than not it’s the amount of contact rather than the quality that’s important. Having friends over even briefly, maintaining contact by phone, visiting others or meeting people for activities outside the home all help.
Because the needs of caregivers are often overlooked by others, you may have to take the initiative to get them met. That may mean doing things without your family member. It doesn’t mean you’re selfish, it means you’re taking care of yourself. Find somebody you can talk to. Caregivers participating in a study conducted by the Visiting Nurses Association said that simply being listened to was as valuable as anything else the program gave them.
Therapy and support groups are valuable tools, but there are caveats. Support groups work best when they’re focused on specific topics such as coping with multiple family roles, asking for help, dealing with losses or managing your time. Far less helpful is sharing war stories and laundry lists of complaints.
Not all therapists are created equal, nor are they immune to the myths surrounding disability and long-term care. Be sure you feel comfortable with whoever you choose, and don’t be afraid to ask about their experience with disability and caregiving.
Family caregivers–typically women–perform so many chores they’ve been called Swiss Army Wives. It’s not uncommon to be held responsible for all household work plus home and car maintenance, parenting and even bringing home the bacon.
Sometimes it’s the sheer volume of work that can lead to burnout. Sometimes it’s when care must be provided. If required at a time that’s disruptive, it can result in loss of personal time and a sense of lost control. It can endanger employment, causing rearranged schedules or missed work, or even lead to quitting altogether. Loss of free time is an almost universal problem, translating into a universal equation: Decreased free time = increased stress.
Caregiving appears to be more stressful for women, who tend to internalize stress more and are much more likely to become involved in direct and intimate care. The end result is often feeling caught between traditional values of being the nurturer/caregiver and contemporary values of being independent, employed and “liberated.” Male caregivers, on the other hand, lean toward working more hours in order to hire home health care.
And things don’t always get better over time. Fatigue can be cumulative, especially in the face of functional declines, health complications or decreased or lost benefits. Worst case scenario? Burnout, both physical and emotional, also known as role overload.
Most people want to keep caregiving in the family. Some feel that no one else can do it as well and others don’t want female home health aides providing intimate assistance to male spouses. And many feel that caregiving is part and parcel of marriage, commitment and family. Regardless of reasons, the desire and need to provide care within the family is very real. But the risks of getting stretched too thin are just as real and must be faced.
It’s not rocket science to figure out that you need help if you’re overloaded physically and emotionally. The rocket science part is figuring out how to get the help–and how to accept it. Knowing what can happen will help you to reconceptualize accepting help and understand that you’re not failing, but preventing yourself from falling into such poor mental or physical shape that you can’t provide assistance. Getting outside help doesn’t imply less love, commitment or caring, but constitutes a brave and realistic assessment of what you can and can’t do.
The most obvious way to avoid burnout is by hiring or delegating someone else to do such things as bowel programs, bathing, dressing or transfers. If it’s financially feasible, it’s a logical solution.
Another way to lighten the load is to get help with everyday chores such as shopping, errands, yard work, babysitting or tax preparation. How many times have you heard family, friends and neighbors say, “If there’s anything I can do to help, please ask”? If you take them up on it, it might be easier for you to continue providing the intimate care.
It helps to remember that what you do is valuable and vital for the person receiving it. Validation is important, and just as important is accepting it as real. Look for validation from family members, friends, support groups, church groups or even from a counselor or therapist.
If you feel out of control, do what it takes to anticipate problems and make life more predictable. Regain control with information, scheduling, financial discipline or simply getting organized.
Outside help, validation and feeling in control won’t do much good if you don’t take care of yourself. Denying yourself the refreshment and renewal of hobbies, exercise, time with friends or spiritual pursuits only increases the risk of burnout. An hour in the garden or with a good book may make you a better and happier caregiver.
Disability is often a third partner in a marriage, disrupting how a couple or family functions and threatening the sense of equality in a relationship. Each partner needs to feel they’re getting something out of the relationship as well as contributing something to it.
There’s a temptation for a nondisabled spouse to protect his or her partner from bad news or emotional upsets, or to ignore destructive behavior like inappropriate drinking and drugging. This, too, serves to keep the relationship unequal, with one partner carrying far too much of the emotional burden.
Studies report declines in sexual intimacy between caregivers and disabled spouses. Your spouse may feel you no longer find him or her attractive, or you may assume your partner is no longer interested. These assumptions may not be accurate. Many caregivers find making the shift from caregiver to lover difficult, especially if sexual intimacy comes soon after intimate care is given or if it takes place in the same physical location.
And many families with a disabled member are already somewhat strapped emotionally, physically and financially. As a result, transitional times such as moving, beginning a job, changing schools and holidays can be especially stressful.
It’s important to understand that disability brings loss to everyone in the family. The most successful families and couples are able to keep the disability separate from the person who has it.
Keep your family functioning with the common-sense formula of communication, clear expectations and focusing on family strengths. While balance and fairness are important, contributions don’t need to be equal. Many caregivers feel that their disabled spouse makes a substantial contribution by maintaining good humor and a positive attitude. And depending upon severity of disability, the disabled spouse can contribute by becoming the designated gofer, chauffeur, chief financial officer, home maintenance scheduler or day-care expert.
Sexual intimacy should not be abandoned lightly. Make it a priority, and be brave enough to explore options such as Viagra, injections or vacuum devices to compensate for loss of function. If it’s a problem, try to keep care-related equipment out of sight. Most couples view sex as a physical expression of their emotional feelings. Fight to keep intimacy alive.
Try to keep on top of mundane matters. Do a periodic review of all resources such as finances, benefits, insurance, outside assistance and government and community programs. Foresight and preparation can take the sting out of almost any hardship.
Long-term caregivers report more pain, more doctor visits, poorer health and a faster rate of declining health than those who don’t provide care. Not surprisingly, many of the health problems are related to the job–back injury, chronic fatigue, gastric distress, sleep deprivation, headaches and poor nutrition as a result of reliance on fast food.
At the root of the problem is forgoing such health-promoting behaviors as exercise, stress management, proper diet and a commitment to social and spiritual maintenance. Ignoring any of the five health types–physical, emotional, spiritual, social and intellectual–for too long courts ill health.
An almost universal question is, “Who has time?” A more realistic question is, “Can you afford the consequences of not taking care of yourself?” Successful caregivers know the importance of good self-care and also know that their own health and well-being are anything but luxuries.
Consider adopting the following as mantras: If caregiving is important to me, then I must value my health. If I fear others can’t provide adequate care, then I must protect my health. If I can’t afford outside help, then it’s too expensive to get sick or injured. If I don’t have time to be sick or injured, then I must make time to take care of myself.
Providing care to a partner or family member, while often a labor of love, requires the skill and grace to ensure your own mental and physical well-being. That means accepting that there’s more to life than caregiving–no matter how constant the need–and realizing that it’s quite possible to maintain a high quality of life while providing care. A critical part of the care you provide is self-care.
- The National Family Caregiver Association offers information and support with a newsletter, Take Care! Self Care for the Family Caregiver, a Web site www.nfcacares.org and other resource publications. 10400 Connecticut Ave., #500 Kensington, MD 20895; 800/896-3650
- The Center for Family Caregivers, publisher of Caregiving, views caregiving as a meaningful journey and offers resources for the six stages they identify.P.O. Box 224 Park Ridge IL 60068; 847/823-0639; www.familycaregivers.org
- Family Caregiver Alliance offers support and information with an advocacy and public policy emphasis. 690 Market St., Suite 600, San Francisco, CA 94104; 415/434-3388; www.www.caregiver.org