Couples dealing with Spinal Cord Trauma
When one member of a couple sustains a sudden spinal cord injury, the relationship changes in an instant. The equilibrium of the family is disrupted and the couple can become closer together or far apart, depending on a number of factors. Everyone copes with crisis differently and couples that had good communication and healthy boundaries before the injury will likely carry them forth following the spinal cord trauma.
The uninjured member of the couple first faces feelings of fear. They wonder if the loved one will survive the injury at all. They begin to worry about finances, whether or not they will have to move or change jobs, and things like what the disability means to the needs of the injured person. They often spend a great deal of time at the hospital, needing to become accustomed to hospital routines just as much as the patient does.
If the couple has to be physically separate from one another during the hospitalization or if the able-bodied person must take on the responsibility of being a ‘single’ parent, this can only contribute to the stress the couple must face. The able-bodied partner often feels a sudden loss and loneliness from having to leave their loved one at the hospital every night.
Communication and the giving of information to the spouse are as important as giving of information to the patient themselves. The able-bodied person must be made to feel in the loop when it comes to decision-making and must understand that no amount of love and attention on their part will ‘fix’ the injury. This is not to say that the person’s love and support aren’t very important, however.
The able-bodied person should be allowed to attend physical therapy and related sessions so they know how hard their loved one is working but many don’t like to see their spouse suffering and won’t attend such sessions. The able-bodied partner should be encouraged to learn all they can about spinal injuries and the specific individual problems their loved ones are facing. This helps with feelings of helplessness the individual often feels.
Grief is common among spouses and patients alike. As strong as the able-bodied person wants to appear in front of the patient, they naturally feel a silent grieving process that they cannot always share with others. They need to know that this is normal and it should pass. Guilt is another common feeling among spouses, even if they were not part of the accident that caused the injury. They feel guilty, instead, about being able to walk when their partner will probably never walk again. The guilt keeps them at the patient’s bedside, often letting important work and home duties go undone. Guilt can lead to doing too much for the patient who must learn to be as independent as possible after their spinal cord injury.
Partners of injured patients go through all the same stages of grief that the patient does, including frustration and resentment, anger and depression. Rehabilitation from a spinal cord injury often takes months and it may seem to the partner that the work is going too slowly. The person becomes angry at staff and at their partner for not trying hard enough to get better.
Other spouses are in denial, believing that things will eventually normalize. They may turn their denial into refusal to learn how to care for the patient, believing it is not necessary. The person can be so overwhelmed by what has happened to their loved one that they become clinically depressed. Medications or psychotherapy may be necessary to help this individual. Support groups can also help.
It may be difficult to ‘burden’ the spinal cord injury patient with the feelings of depression the spouse is facing but it is erroneous to believe that the injured person cannot handle this kind of news. He or she may be facing exactly the same issue. In fact, not sharing the trials and tribulations of the able-bodied person may contribute to feelings of devaluation on the part of the injured person. Shared communication is the only way out of these issues.
People who have a spouse to come home to are more likely to be discharged to home when compared to single people. Physical modifications may have to take place within the home before this can happen, however, and the spouse must be able to learn at least some cares as a personal care attendant might not be around all the time.
Some able-bodied persons feel as though the injury has made their relationship stronger. They are going through profound changes together and this leads to increased closeness. The focus on the family becomes an important part of recovery for everyone involved.
The roles can be altered after a spinal cord injury. If the injured person was the sole breadwinner in the family, adjustments must be made so that the family doesn’t fall into financial ruin. If disability benefits help the family get by, the couple will find themselves spending more time together than before the injury. This can be good or it can backfire
because the uninjured partner must do all the domestic duties, especially if there isn’t a reliable personal care attendant.
Many of the changes that need to take place when the victim comes home can lead to increased emotional and physical stress on the part of the uninjured person. The physical work of caring for a spine injured patient is demanding enough and the emotional toll can be great. Many times the able-bodied person becomes so exhausted that they need care for themselves as well.
When things get overwhelming, it is a good idea to get as much help from friends and family, and to hire a personal care attendant who can do almost anything to care for the injured patient and his or her family. The uninjured spouse is encouraged to resume hobbies and activities as soon as possible for better mental health. Enlist the help of the paralyzed person to the degree that they can help, even if it is not regarding physical activity.
Social contacts for both persons need to be maintained post-injury. Therapy and support groups can help both the injured and uninjured partners.
If the homemaker is injured, there may be less of a financial burden but the things to be done around the house, including caring for their children may need to be delegated to someone other than the uninjured partner. The injured homemaker might feel guilty and sad that they can no longer participate to the fullest degree possible.
Usually, the problem is solved by hiring a person to care for the home in the partner’s absence at work. A housekeeper or personal care attendant can make a big difference in the lives and happiness of the couple. Some people welcome this sort of support, while others resent having to have a stranger come into their home to keep up the house for them.
People with worse injuries actually tend to do better than those with lesser injuries because those who can do something but don’t choose to do it can bring about resentment in the able-bodied partner. Even so, it can be hard to cope with all that is needed to be done around the house and, even though many resist it, hiring a PCA and/or housekeeper can greatly take the pressure off the able-bodied person.
Some people feel as though being their partner’s caregiver reduces their sexual relationship with their partner. These same feelings can be shared by the injured person, who feels like a patient rather than a lover.
The balance of ‘power’ in the relationship is altered after the injury and this can lead to resentment on both sides. The able-bodied person can go too far, allowing themselves to be sole caregiver to their injured partner. Those that do well are those who strike the proper balance between giving care to their partner, and being their sexual and life partner. Open communication is required in order to make it work and to make the decision together as to who and how much to have others in the home for domestic duties and caregiving duties.
If things get too rough, couple’s therapy can help improve communication and can help couples redefine their new roles in the relationship. They may need to learn how to be sexual with one another again and must have a sense of adventure and humor around sex and intimacy. Certainly sex will be different but with a little bit of innovation, the couple can overcome the difficulties and become intimate again.
Divorce is more common in couples where one person has sustained a spinal cord injury. The likelihood of divorce is greatest shortly after the injury. After a period of time, the divorce rates fall to normal levels. Couples that were not strong before a disability will not be strong afterward.
Many couples say that disability in the relationship actually made their union stronger. They have had to go through a lot following the injury but they did it together and this led to a stronger bond between the two. People who are disabled and in a committed relationship report that they are happier and have better social lives than those who weren’t in a committed relationship at the time of their injury. Successful couples want to be together, even in the face of a tragic injury.