Spinal Cord Injury (SCI)

Like caregivers to brain injured individuals, caregivers to individuals with SCI experience a great deal of stress. Research suggests that caregiving spouses of long-term SCI survivors report more stress and depression than their SCI partners, and more than other spouses who are not caregivers.

As an SCI caregiver, you may now be responsible for the daily activities, health, and well being of your injured loved one. You may experience the physical strain of assisting with transfers—in and out of the bathtub or in and out of the car—and the psychological strain of worrying about your loved one's health. You must also learn the daily maintenance routine that is required to ensure their health.

At the time of the injury, feelings of shock, denial, guilt, and anxiety are typically present. However, when the injured person is discharged home, the caregiver's stress drastically increases. In the hospital, assistance was provided by a team of nurses, aids, technicians, and physicians. Now the responsibility for the health of the SCI individual may fall on you.

Although a person with a SCI may require 24-hour assistance, financial constraints may make hired assistnace impossible. Most often, the primary caregivers to an individual with a SCI are the family members. Often, these same family members have the responsibility of earning a living to support the family, and of maintaining the home and children. While any one of these responsibilities would be considered a full-time job, many caregivers find themselves working the equivalent of several jobs.

Issues specific to SCI caregiving include

• Assisting with mobility, such as pushing a wheelchair or assisting with transfers
• Assisting with Activities of Daily Living (ADLs), such as eating, bathing, and toileting
• Maintaining the health of the injured individual

If you find yourself with too many "jobs," there are ways to get assistance.

Assisting with Mobility

It is important to learn the proper technique for assisting with wheelchair transfers. This should have been demonstrated by professional staff member in the rehabilitation facility. If not, contact your doctor's office to discuss it. Improper technique often leads to back or muscle strain, which can render you incapable of assisting the individual until you are healed.

Assisting with Activities of Daily Living (ADL)

ADL assistance is another responsibility of the primary caregiver. Before the injury, they were able to brush their hair and teeth and groom themselves quickly. Now the process can be tedious and time consuming.

It is important that you, as the caregiver, do not expect the individual with a SCI to move as rapidly as before the injury. While it is difficult to do, the less you expect the person to behave as he/she did prior to the injury, the less frustration you may feel when assisting them. Over time, you will adjust to the new timeline for accomplishing these activities.

If possible, encourage the individual to perform any activities they can independently. Be creative with ways that you accomplish ADLs. This may mean reorganizing the bathroom so items can be reached from the wheelchair. It may mean using cuffs, reacher tools, or adaptive aids. These items can be found on the Internet, at local medical supply stores or through mail order catalogues such as Sammons Preston (1- 800-323-5547).

Remember, the goal is maximum independence for the SCI individual. While you may be able to accomplish short-term goals more quickly if you do it yourself, your actions can thwart the SCI individual's progress.

Maintaining Health Routines

While activities such as the bladder and bowel program are probably new to you, it is important that you maintain a regular schedule for these activities. Again, over time, these activities will become a regular part of your day and your frustration will decrease.

If you continue to experience difficulty with either the bladder or bowel program, speak with your doctor or nurse about the process. They may be willing to assist you through instruction, making the process less stressful.

Finding Assistance

Anxiety and depression are common reactions to performing the role of primary caregiver. If possible, hiring an attendant to assist you with caregiving activities may provide you the relief you need.

Contact local home health agencies for attendant care services and prices. The level of your loved one's injury will determine the level of care that is required. Research published in 1998 found that females with SCI are more likely to have a paid attendant, while males with SCI are more like to have their spouse or parents assist.

If you don't feel comfortable hiring an attendant to assist you in caring for your loved one, consider hiring someone to help you with household chores or errands. Often, local charities provide respite care for family members of SCI individuals. A respite worker typically will come into your home and stay with the injured individual so you can run errands, or simply get out of the house. This service may be provided at low or no cost to you.

Also consider delegating smaller tasks to your children. This makes them an integral part of the caregiving team. Feeling like they are contributing to the well being of their loved one and to the maintenance of the household empowers children and provides them with a sense of pride.

Local support groups may be another option for caregivers of SCI individuals. Contact your local hospital or rehabilitation center for locations of support groups close to you. Professional mental health counselors in your area may also be helpful to you, especially as you adjust to the SCI individual returning home from the rehabilitation hospital.