Caregivers need care and attention as much as anyone else.
No one plans on spinal-cord injury (SCI). “No one” includes the spouse, family, and person who provides care—as well as the survivor.
Yet, as a caregiver, you’ve been there, all this time. And by now you know there’s often not much out there in the way of support for spouses, friends, and family. You say you feel neglected?
At first, survival was everything. As time went by there were medical complications and quality-of-life issues to worry about, then the fights for accessibility and equality for benefits and entitlements. Through it all, you, the caregiver, fought the good fight, stayed in the background, and seldom complained.
After all, it wasn’t you dealing with all the tough physical, emotional, and social stuff. Or was it?
Some research has been conducted on people who give care—whether to a person with SCI or Alzheimer’s disease or to an elderly relative.
Everybody has stress, but caregivers have more of it. This results in health problems, sleep disorders, and all the other effects you read about in the popular press. In one group of caregivers studied—people who had been caring for a family member with quadriplegia for an average of 7½ years—75% had higher stress levels than the general population.
Stress often shows up as “burnout,” defined as physical and emotional exhaustion. Its symptoms include diminishing self-esteem, a negative attitude, a loss of concern for others, and a loss of focus on your own life. It’s real. It happens.
And since 40–45% of SCI survivors use caregivers, there must be a lot of it going around.
If you’re a caregiver experiencing stress, it may help to realize you’re not alone. When caregivers get together, the same concerns emerge over and over again. They seem to fall into four categories:
– Loss of Personal Time and Space
Disability never takes a holiday, and neither does caregiving. Where do you fit your life into all the things that must be done for someone else? Your own needs routinely take a back seat to caregiving, child rearing, working, and other responsibilities about which there is no choice. And if a new problem comes along, the time to deal with it comes out of your own free time, not from caregiving time. Research shows that when free time goes down, stress goes up.
– Social Isolation
Caregiving does nothing for your social life, and the frustration and fatigue that often go with it can further separate you from the company of others. You may no longer hold down a job, and the children may be grown. You believe you can’t leave the house. You may have spent your entire adult life caring for children, parents, and/or spouse, and you’re not getting any younger yourself. You miss exposure to friends and family, to entertainment and relaxation, to the occasional novel experience. That’s stressful.
– The Quality of the Relationship
Many caregivers complain they don’t have good two-way communication with the person receiving care. In one researcher’s study group, only 60% said they got along with their spouses. Many think they treat their spouses better than their spouses treat them, and others perceive personality changes in their partners—such as a new passivity or loss of interest in child rearing or in the relationship itself. Sex lives sometimes go downhill.
– Endless Worry
Caregivers worry their spouse’s condition will worsen. They worry about their own health. They worry they can’t continue the level of care they managed when they were younger, yet they also worry someone else won’t do as good a job—not an unrealistic concern.
They worry about finances. Will providing care, or even a nursing-home placement, make the spouse poverty stricken as well? And who, eventually, will care for the caregiver?
You may not be able to do anything about the disability, but you can do something about how it impacts your time, energy, and quality of life. Nowhere is it written that simply because you provide care for someone with a disability, you may not have a life of your own.
(1) Recruit additional help
If finances permit, give strong consideration to getting some help and dividing the delegated work load between two or more part-time personal assistants. They can share on-duty time, spell each other when time off is essential, and significantly reduce stress for you. Don’t put all your eggs in one basket.
(2) Support groups
Share your feelings. One successful group was started by a few wives of men with disabilities. Besides providing mutual support, they devoted one of their twice-monthly meetings to a specific topic and invited a speaker—for example, someone to talk about financial planning for long-term care.
You might start your own support group. Ask for names of other caregivers at independent-living programs, rehabilitation centers, and your chapter of the National Spinal Cord Injury Association (NSCIA) or Paralyzed Veterans of America. If you’re a computer user, you’ll find dozens of disability-related groups exchanging ideas on online services.
(3) Improve your relationship
Research indicates the better you feel about your relationship with the person receiving care, the less stress you will have. Talk with him or her. Get counseling. If there is serious conflict, invite a third person—one both of you know and trust—to help mediate. The results can be gratifying: Spouses with the highest morale generally attribute it to their continuing companionship and good relationship with their partners.
(4) Avoid isolation
Invite people in. Cultivate friendships. Make that family of yours show up once in a while, even if all they do is bring in gossip and fast food once a month. Research shows people who have more frequent visitors—that’s right, not only high-quality memorable or long visits, but just frequent ones—report lower stress levels.
(5) Get out of the house
Go somewhere, anywhere—alone or with friends. Arrange things so the tasks you’re most worried about (bowel care and skin management, perhaps) are done before you leave. Family, neighbors, or even paid services can often cover for you, at least for a few hours.
(6) Respite care
Consider outside help for longer periods. Look for local respite programs that can provide you with an extended break from your usual routine. Try religious organizations (you probably don’t need to be a church member) or ask at area hospitals. Check out elder day-care programs; some of them can provide trained caregivers during the day, at their place or yours.
You might start a care-swapping program in which several caregivers take turns covering for one another, or share one attendant several of you hire. Consider students majoring in healthcare and related professions; they are often required to do volunteer work. Why not with you?
And your spouse? It’s a jolt to have a stranger provide intimate care, but it’s a jolt that goes away with familiarity. Your spouse may even welcome the variety, especially if it makes your life more workable.
(8) Get your finances in order
Regardless of how little or how much you have, get help sorting through insurance policies, retirement programs, and Social Security and other government entitlements to find out what’s available to draw on. Keep in mind that specific benefits and programs change from year to year, so re-check periodically.
The Remembered Person
You may sometimes feel like the forgotten person, but that’s all the more reason to remember you have your own needs and goals and life. Finding ways to acknowledge and nurture your personal life will bring new energy and enthusiasm into your life as a partner, friend, and caregiver.
The preceding information is from the pamphlet “For Better and for Worse: Long Term Care Givers,” originally published by the Rehabilitation Research and Training Center on Aging with Spinal Cord Injury, Englewood, Colo.