CODI: Cornucopia of Disability Information

For better and for worse - spouses and other long term care givers

For better and for worse
- spouses and other long term care givers

No one plans a spinal cord injury. That includes both you
and the survivor. You've been there through it all - the
medical complications, the fights for accessibility and
equality, for benefits and entitlements. Yet there's not
much out there by way of support for you and others like you
- those who provide long term care to spinal cord injury

Over 40 percent of all spinal cord injury survivors use some
assistance, usually from family members. Yet these
caregivers, whether they are caring for a spinal cord
injured person, an elderly relative, or one with
Alzheimer's, are often overlooked. What little research
there is on caregivers however, shows that they suffer far
more stress than the general population. In one study, 75
percent of those caring for a family member with
quadriplegia for an average of 7.5 years showed abnormally
high levels of stress.

The results of all this stress is health problems, sleep
disorders and exhaustion, both physical and emotional.
Diminished self-esteem, a negative outlook and a loss of
focus on one's own life only add to the problem.

The Roots of Stress:

     Loss of Personal Space and Time
     Disability itself doesn't take a holiday and neither
     does caregiving. How do you fit a personal life into
     all the things that need to be done for someone else?
     Your wants and needs for recreation and the chance to
     express your individuality, routinely take a back seat
     to caregiving, and other responsibilities about which
     there is no choice. Moreover, the time to deal with
     problems that may arise comes out of your own free
     time, not out of the time devoted to caregiving. This
     much is known: when free time goes down, stress goes
     Caregiving does little for your social life, and the
     frustration and fatigue that often go with it, further
     separate you from the company of others. You may no
     longer hold down a job. If your children are grown, you
     may have to confront the "empty nest syndrome" with all
     of its anxieties and none of its rewards. You may have
     spent your entire adult life caring for children,
     parents and spouse, yet you're not getting any younger
     yourself. You miss exposure to friends and family, to
     entertainment and new stimulation, and it's stressful.
     The quality of the relationship. Many caregivers
     complain that they don't have good two-way
     communication with the person receiving care. In one
     researcher's sample, only 60 percent said they got
     along with their spouses. Many said they treated their
     spouses better than their spouses treated them. Others
     perceived personality changes in their partners such as
     new passivity, less interest in child rearing or in the
     relationship itself. Sex lives sometimes go downhill.
     Caregivers worry that their spouse's condition might
     They worry about their own health and mounting fatigue.
     They worry about maintaining the same level of care as
     they could when they were younger. At the same time,
     they worry that someone else won't do as good a job -
     not entirely unfounded. Finances are another source of
     worry. Will care, or a nursing home placement, leave
     the helper poverty stricken as well? And who,
     ultimately, will care for the caregiver?

     Share your feelings

     Ask about support groups at rehabilitation centers,
     local chapters of the National Spinal Cord Injury
     Association, Paralyzed Veterans of America or at
     independent living programs. No luck? Consider starting
     your own group, using one of these organizations as a
     resource. Computer users can find dozens of disability
     interest groups exchanging ideas on-line; look into
     services like CompuServe, Prodigy, and America Online.
     One very successful support group was started by a few
     wives of disabled men. 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.
     Improve your relationship

     Research suggests that the better you feel about your
     relationship, the less stress you will have. Talk with
     him or her. Get counseling. If there is serious
     conflict, invite a third person - one you both know and
     trust to mediate. The results can be gratifying;
     spouses with the highest morale generally attribute it
     to the continuing companionship and good relationship
     they have with their disabled partner.
     Avoid isolation - Invite people in

     Have visitors. Make your family show up occasionally,
     even if only to bring in gossip and fast food once a
     month. Research shows that people who have frequent
     visitors report lower stress levels.
     Get out of the house - alone

     Go to a movie, get your hair done, go to church.
     Arrange things so the tasks you're most worried about -
     bowel care and skin management, perhaps - are done
     before you leave. Family, neighbors, or paid services
     can often cover for you, at least for a few hours.
     Consider respite care

     Look for local programs that can provide you with a
     more extended break. Try church organizations; chances
     are you don't need to be a member of the particular
     denomination to use its services. Check out elder day
     care programs. Some of them can provide trained
     caregivers during the day, at either your place or
     theirs. Consider starting a careswapping program in
     which several caregivers can hire a sixth - perhaps a
     retired person - to work five afternoons a week. Then
     each can get out of the house one afternoon a week.
     Consider students majoring in health care and related
     professions. They are often required to do volunteer
     work. Why not with you and your spouse? The shock of
     having a
     stranger provide intimate care dissipates when the care
     giver is no longer a stranger. Your spouse may even
     welcome the change.
     Try to get your finances in order

     No matter how little or how much you have, get some
     help sorting through insurance policies, retirement
     programs, social security, and other government
     entitlements to find out what there really is to draw
     on. Keep in mind that your entitlements and eligibility
     for specific benefits and pro grams change from year to
     year, so recheck periodically.
     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.
Stay Active, Act Your Age

Aging. It’s inevitable but it needn't be awful and
depressing. Betty Friedan, in her new book The Fountain of
Age, argues that a large part of our health and satisfaction
as we age - even our survival - depends on our being more
active, more engaged with life, less withdrawn from people
and activities.

The Duke Longitudinal Study - a benchmark study of normal
aging concludes that social activity tends to "maintain
health by stimulating more physical and mental activity, by
providing a social network...and by maintaining a sense of
self-esteem and social worth." According to the authors,
more social activity is associated with more physical
health, happiness and longevity.

Another respected study on aging, The National Institute of
Mental Health (NIMH) Longitudinal Study, finds that two
factors {out of a possible 15), predict survival to the age
of 81 better than all other factors combined: smoking and an
active life. Smoking, as expected, predicts non-survival; an
active social life predicts survival.

Postscript: Are you one of these "forever young" people? The
NIMH study says that successful survivors do not deny their
age, but are realistic about both its limitation and
advantages. Conclusion? Stay active, don't smoke, act your

Contributed by The Rehabilitation Research and Training
Center on Aging with Spinal Cord Injury, a joint project of
Craig Hospital, Englewood, Colo., and the Department of
Rehabilitation Medicine at the University of Colorado,
Health Sciences Center in Denver. The center is funded by
the National Institute of Disability Research and

This article appears in, and is reproduced with permission
of Life, a publication of
The National Spinal Cord Injury Association
545 Concord Avenue, Suite 29
Cambridge, Massachusetts 02138-1122