Life on Wheels (14 page)

Many people who use personal assistance say that they would not recommend a family member playing the role of primary caregiver, especially a spouse. It alters—sometimes seriously strains—family relationships. When a parent assists an adult child, the quality of the relationship can revert to when the adult child was young, as the protective instincts of the parent resurface. Even when a parent-as-caregiver relationship succeeds, parents will have increasing difficulty with the physical tasks as they age.

Some families succeed by sharing the caregiver tasks among parents and siblings. No one person is overwhelmed, they learn to perform tasks and procedures effectively, and everyone knows the first priority is preserving the disabled family member’s rights of decisionmaking and control—and dignity. People can discover that tasks that they considered unpleasant—like providing bowel assistance—become more accepted with experience:

When the caregiver role falls to a family, there are choices about how to approach it and what to make of it. With appropriate training and support, a family can settle into a routine that is not burdensome and makes a full life possible for their loved one. Chapter 2, Healthy Disability, contains information about personal assistance services.

Rehab is only the start of the process: there is more to accomplish. You might not be a resident at a rehab hospital anymore, but your insurance might cover continuing therapy on an outpatient basis. Even if you live in a different city from the major rehab hospital where you stayed, there are an increasing number of small rehab hospitals or therapy groups that can work with you closer to home.

There is likely to be a Center for Independent Living (CIL) in your area. Although not a rehab hospital, a CIL can help in many ways. If you are struggling with your insurer about coverage for continued therapy, the CIL might be able to offer you advocacy training and support to gain funding for your needs, possibly even for home adaptation. Many CILs conduct support group meetings that give you the chance to meet others who share your circumstances. You get to learn from the pros, who will gladly share their “tricks of the trade.” Of course, each CIL has its own programs. Offerings vary widely.

Just because the insurance industry calls the shots on how long you get to stay in rehab does not mean that you are denied the chance to be as strong and active as you can be. It just means you have to do more of it on your own.

Janie Whiteford of Santa Clara Valley Medical Center notes:

Rehab is inevitably a sheltered environment where you can begin adjustments. Once you get out, there will be new stresses, even for the person who has good coping skills. Kentfield Rehabilitation Hospital’s Dr. Alex Barchuk comments:

Your disability will need continuing medical management. Maintain a relationship with your physiatrist. If you traveled to a regional rehab center, identify a place that can offer ongoing physical medicine services. Ask your rehab doctor for a referral.

You are also going to have general medical needs. You’ll get the flu, sustain a deep cut, deal with allergies, and so on. Don’t neglect your standard healthcare. Get checkups and have a relationship with a family practitioner.

You’ll have to educate these doctors about your disability. There is much they will not understand, since they do not deal with disability on a daily basis. You will have to ask whether their office has an accessible bathroom, for instance. Believe it or not, the office itself might not have room for the passage of your wheels.

Even if you have been living with your disability for many years— whether you had a formal inpatient rehab experience or not—the rehab community still has something to offer you. Says Margaret Nosek, PhD, researcher at Baylor College of Medicine in Houston:

1

. Di Fabio RP, Soderberg J, Choi T, Hansen CR, Schapiro RT. Extended outpatient rehabilitation: its influence on symptom frequency, fatigue, and functional status for persons with progressive multiple sclerosis.

1998;79(2):141-6.

2

. Yarkony GM. Overview of spinal cord injury rehabilitation in the acute phase, the rehabilitation team, and classification of spinal cord lesion. In: Yarkony GM, ed.

. Gaithersburg: Aspen Publishers; 1994:3.

3

. Price R.

. New York: Plume/Penguin Books USA; 1994:101-2.

4

. Hockenberry J.

. New York: Hyperion; 1995.

5

. Morris J. Spinal injury and psychotherapy. In: Yarkony GM, ed.

. Gaithersburg: Aspen Publishers; 1994:225.

6

. Winchell E.

. Garden City Park, NY: Avery; 1995:225-26.

7

. Fisher I. Families Struggle to Care for Loved Ones.

; June 7, 1998.

Our culture broadly equates disability with “sickness.” Your mobility impairment might indeed correspond to a medical condition for which you are being treated or from which you are recovering. Many disabilities, however, are relatively stable conditions. This is generally true for spinal cord injury (SCI), cerebral palsy (CP), amputation, brain injury, and others once medical stability has been reached if there was a traumatic cause.

All of which is to say that there is such a thing as health in the context of disability and that putting your attention and priority on optimal health is a worthy choice. Especially if you are in treatment or recovering, being as healthy as possible in all other ways will only help the process. In any case, being healthy means having the greatest independence and less emotional burden. It could even mean feeling great as you get out there and live well.

Your disability might entail the risk of certain medical complications. You’ll need to be aware of those that could affect you so that you can take preventive actions, recognize early warning signs, react promptly, and capably participate in treatment decisions.

Being a person with a disability who uses a wheelchair entails additional health risks, and you must work harder to maintain your overall well-being. That said, the better you maintain your general health, the less prone you will be to secondary conditions pertaining to your disability. If you lack sensation, you must be alert for other signals from your body. Primary care doctors might not understand specialized needs you have; specialists in a particular condition or body system might not understand how your disability changes how they would normally treat a condition.

The 2004 National Organization on Disability/Harris Survey of Americans with Disabilities
¹
notes that those with disabilities are less likely to be able to afford healthcare, get insurance, or have special needs covered by insurance.

Slightly more less one out of five (18%) adults with a disability did not get medical care that they needed on at least one occasion during the past year, compared to one in 14 (7%) adults without a disability.

Thirty-nine percent of adults with disabilities postponed getting healthcare they thought they needed in the past year because they couldn’t afford it.

One in four (26%) adults with disabilities report having trouble finding a doctor who understands their personal healthcare needs, compared with only one in ten (10%) of adults without a disability

It is wise to learn all you can about healthcare and advocate for yourself before an emergency or serious health threat arises. General precautions you might want to take to prepare for potentially serious medical situations include the following.