Caring for the Paralyzed

The Centers for Disease Control and Prevention (CDC) has reported that 1 in 50 Americans is living with some degree of paralysis. Paralysis can be either complete or partial, occurring on one or both sides of the body. It also can affect just one area, or be a widespread issue. Paraplegia is when paralysis affects the lower half of a loved one’s body, and quadriplegia is paralysis of both arms and legs.

Much of the time, paralysis is caused by strokes or a spinal cord injury. Other causes could be nerve or autoimmune diseases or Bell’s palsy. The care a person needs will vary depending on the cause and nature of the paralysis; but whether from an accident or illness, caregivers can learn ways to make life easier.

POST-DIAGNOSIS

Shock and disbelief are probably the most common reactions immediately following the diagnosis of paralysis. Adjustment takes time and a caregiver can expect a loved one to go through a variety of stages including: grieving, taking control, talking about the disability, taking care of self, and looking ahead.

A caregiver can find a lot of support for themselves and a loved one from local medical and/or counseling professionals, as well as support groups. The Web sites of the Christopher and Dana Reeve Foundation and the American Paralysis Association contain a wealth of information.

One major concern post-diagnosis is paying for the mounting costs of paralysis. The University of Alabama’s National Spinal Cord Injury Statistical Center and the CDC have estimated these costs and say that the first year of any type of paralysis will cost the most (up to $900,000 at the most severe level) and in subsequent years, less, but still total nearly $200,000 per year.

This same group reports that 12 days is the normal stay of initial hospitalization, followed by an average of 37 days in a rehabilitation unit. Nearly 90 percent of all spinal cord injured loved ones are discharged to their private homes, and about six percent to nursing homes.

While all of this can be overwhelming and terrifying to both caregiver and loved one, there is support available through grants and other funding. The paralysis foundations and associations offer a place for caregivers to locate and pursue these opportunities.

In a study done by the CDC and Reeve Foundation, it was found that the annual household income of most people in the paralysis group was less than $30,000, and for 25 percent, it was $10,000. The diagnosis of paralysis often leads to job loss. If the spouse is the main caregiver (as is often the case), he or she may also face job loss and loss of health care insurance. And while it’s been proven that technology is helping people with paralysis live longer, the cost will be extended as well.

The Reeve Foundation explains that being uninsured or underinsured does not mean there are no ways to get health coverage. Hospitals which accept federal funds on any level must provide specified amounts of free or reduced-fee care to patients. The hospital’s financial department can provide qualification information to caregivers.

BODY CARE

Loved ones living with paralysis may experience a host of secondary conditions to varying degrees, depending on the location of the paralysis and its severity.

Some of these include blood clots, pneumonia, low blood pressure, pressure sores, spasticity, pain, bladder or bowel infections, and autonomic dysreflexia (AD), an emergency that must be treated immediately.

For general body health, a good rule of thumb for caregivers to know is to change a loved one’s position every two hours. Pressure sores, if not found and left untreated, can lead to a serious complications. They develop when an area of the skin is under a prolonged period of pressure. It can be helped if the pressure is relieved regularly (thus, the changing position guideline).

Choosing a rehabilitation facility is a very important decision and one that significantly will impact the progress of a loved one with paralysis. A caregiver should look for accreditation by the Rehabilitation Accreditation Commission (CARF) for spinal cord injury, which indicates that the facility meets a minimum standard level of care. Always ask if the facility has previous experience with the specific diagnosis and level of paralysis a loved one is facing.

The importance of regular exercise for someone with paralysis cannot be understated. Scientific studies predict that most recovery will come within six months of injury, and is complete within two years. Christopher Reeve proved that these medical expectations could be beaten, and did, having significant improvement five to seven years after his accident. Many believe that this was because of the exercise routine he began the year he became paralyzed. Though his regimen was targeted toward his needs, and each loved one that is paralyzed will not have the same outcomes, professionals all agree that exercise is a good thing for all those suffering with any form of paralysis.

EMOTIONAL CARE

Depression is very common in a newly paralyzed person, and there are warning signs a caregiver can watch for that will red flag this as an issue. They may include: oversleeping, change in weight, loss of interest and negative thoughts. Changes in mood can be gradual, so it may be harder for a caregiver to see a noticeable difference. Many times, other people will notice it first. A caregiver must be open to the observations of those who care for a loved one, but may not be a primary caregiver.

In a paralyzed individual, the onset of depression is two or three times greater than in someone without the condition. Though it’s very treatable when addressed, extra care must be given regarding prescription drugs. The side effects of some of the anti-depressants can be stronger for those living with paralysis. Weight loss or gain is a common concern, especially for those in a wheelchair or dealing with pressure sores.

To help combat the emotional downside of paralysis, there are things a caregiver can do. First, be candid about talking with your loved one about your feelings as well as theirs. Putting a person’s mind at ease is a huge hurdle to overcome at the beginning of such personal caregiving. It also helps to maintain active conversations about family, friends, activities, plans, etc. A loved one should keep an interest in the world around them, whether it is through personal relationships or world and local news. Having a sense of what is going on around them while they are in the first stages of paralysis and treatment will help maintain optimism and interest and reduce the feelings of loss and disconnect.

A caregiver can encourage visitors to do the same—talk openly about the obvious “elephant in the room,” but also about their lives, mutual interests, friends and community happenings. Laughter is healthy, as is taking a loved one’s mind off of themselves and the difficulty surrounding their situation.

For many decades, it was thought spinal cord injuries were incurable. Today, advances are being made in research to restore sensation to nerves and muscles damaged by accidents, stokes and chronic diseases. The question is not whether major breakthroughs in treatment will occur, but rather how quickly they will be realized. For caregivers caring for those living with paralysis and their families, the future is one of hope of recovery.