Returning Home after Spinal Cord Injury

The true test of adjustment to a spinal cord injury begins when it is time for the patient to come home.  The disabled person must recognize that there will be inevitable changes in the family relationship, in the home itself, and in their place in society.

It is normal to feel anxious about going home, even when this has been the goal all along.  The patient will be leaving the relative comfort and safety of the rehab facility to the unknown challenges of real-world living.

It helps if a physical therapist visits the home before the patient going home.  This way, recommended measures can be undertaken such as getting a hospital bed in the home, making the inside of the home disability-friendly, and even showing the family where ramps and related things like grab bars in the tub, etc., need to be integrated into the home.

The family members need their own sort of ‘rehab.’ They need to learn about spinal cord injuries and how they apply to activities of daily living, such as getting the patient into and out of an automobile, showering or bathing, and bowel/bladder care of the patient.  Even with the best of intentions and planning, there are bound to be questions that come up upon discharge to home that nobody thought of.

Confidence in going home turns to apprehension as the date of discharge approaches.  The patient, who will have practiced in as many real-world situations during rehab, might suddenly have cold feet, unsure if they can accomplish anything when they have to do it at home.  This is completely normal, and the patient should be allowed to express his or her fears.

To make matters worse, there has been a trend (because of insurance company payers) to have as short a stay at the ICU and in rehabilitation as possible.  Many insurance companies do not allow the patient to go on overnight excursions at home while still officially residing at a rehab facility.  To be able to be confident at home, sometimes going home for a day or so can boost confidence in the patient’s skills they have learned.  Even worse, some insurance companies don’t even allow for a day’s pass for patients to learn real-world skills with their families.

While the spinal cord injured patients will naturally be excited to go home, once they get there, they tend to go through the stages of grief all over again—sadness, anger, frustration, anxiety, and resentment.  This is when they truly understand their disability means to the family and the patient's activities before the injury.  For example, even if they had practiced using grabbers to get food off of high shelves in rehab, it is altogether a different thing to have to do it at home without a helpful occupational therapist at his or her side.  Simple things like chair bed transfers are now done without the same equipment used at the hospital, and anxiety about doing these things can creep in.

Resentment sets in when they see the rest of their able-bodied family members doing well and doing things that now the patient cannot do.  Unfortunately, recovery has no place for resentments and self-pity.  The person must now rely on family, friends, or personal care attendants to do things that were easy to do before the accident.

Everyone reacts differently to going home. Those who led more intellectual lives tend to do better than those who used their bodies for work and recreational activities.  It sometimes helps athletic people to join a sports team involving other disabled individuals.  Things like wheelchair basketball can be beneficial to an athlete suffering from a spinal cord injury.

The biggest source of success at home comes from the patient’s ability to be creative around daily living activities and the extent of their social support, intellect, and emotional resources.  Realizing that mobility limitations are inevitable and focusing only on those things the patient can do will make the transition to home much easier.  Those used to doing everything independently will have more trouble until they recognize their limitations and get help when needed from others.  Substance abuse and self-destructive behavior should be addressed in therapy while the patient is still in the hospital or rehab center.  If the patient doesn’t tackle these problems while in rehab, they might turn back to alcohol and drugs as soon as they get home.

Those paralyzed people who relied on their physical abilities to provide for their families are at particular risk for alcohol and other substance abuse.  This is partly why many rehab centers focus on work readiness in a field that the patient might do after discharge.   Those that don’t do this often abandon taking care of their bodies in other ways as well. They allow themselves to gain weight and develop weakness and contractures from lack of physical therapy care.

They fail to realize that drugs and alcohol might interfere with their medication for their illness.   Because of the high incidence of substance abuse in major depressive patients, family and healthcare providers need to be aware of the possible presence of depression in a patient with a spinal cord injury.  If a patient abused drugs and alcohol before their accident, they would likely return to it again.  Many of these patients are men between 18-35 years of age—exactly the demographic at greatest risk of substance abuse.

Disabled patients with spinal cord injuries are at a higher risk of suicide when compared to age-matched control subjects.  It is believed that spinal cord injury patients commit suicide at 2-6 times more than able-bodied people. Interestingly, the risk is higher among paraplegics than among tetraplegics.  The typical risk factors include substance abuse, lack of social support, and a previous history of depression.  Paralyzed and depressed patients often feel hopeless, and that death is the only answer to their problem.  It is important to recognize and treat depression before getting to the state where the patient feels like suicide is inevitable.   Some signs to look out for include changes in sleep patterns, a lack of appetite (or eating more food), mood swings, and a low energy level compared to their baseline.

Certain medications taken for paralyzed patients, such as benzodiazepines and muscle relaxers, can contribute to depression and suicidal behavior.  Doctors should look for a family history of depression as this can mean the patient will become depressed.   Financial pressures can contribute to depression and suicide.  If loved ones remain around and supportive, depression is less likely to happen.  Those that stay involved in activities and try to be as social as possible will do better with a lesser risk of suicide and depression.  People with a ‘take charge’ attitude do better than those that are passive.

To overcome the grief, anger, helplessness, and other negative feelings around being paralyzed, it is helpful to practice various coping strategies that have helped others in the same or similar situation.  These coping strategies include:

• Adopt a positive attitude: Don’t think about the things you cannot do but instead focus on the things you actually can do well.
• Don’t deny grief when it is there.  This is the only way to move on toward healthier behaviors and a longer, more productive life.
• Differentiate ‘illness’ from ‘disability. These are big differences between the two, and the sooner you get out of the sick mode, you will be able to do things better for yourself.
• Understand that spinal cord injury does not define who you are as a person.
• Make use of adaptive equipment that can make you more functional at home and at work.
• Know that some degree of being dependent can lead to further independence.  For example, having a personal care attendant can mean you have greater freedom to go out in public and go to school or work.
• Continue to hope but be realistic about what can and cannot be accomplished after the accident.
• Develop a new set of personal goals that relate to your ‘new normal.  This goal-oriented behavior can help you find a reason to go on after a spinal cord injury.

Returning home can seem like a daunting task.  There are many changes in the home and family relationships when returning home after suffering from spinal cord injury.  Staying positive and accepting help are key ingredients to success at going home and settling there.

Editor's Note: This page has been updated for accuracy and relevancy. [cha 5.26.21]

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