When a spouse loses physical mobility through a spinal cord injury (SCI), it is a life-shattering experience for both partners. It takes great purpose to rebuild.
I recently heard of a man who tragically lost his wife in a car accident. His life was shattered. However, he tells of how he consciously made the wellbeing of his children the new purpose of his life. This helped him to pull the pieces of his own life back together again.
Two issues ago I wrote about how the acute care and rehabilitation period following an SCI often leaves the spouse lost in space; travelling on the fringes of the recovery journey, but, torn between personal responsibilities and embroiled in roller-coaster emotions, unable to actively be part of the restoration journey.
In this article I propose a process toward establishing a purpose for the spouse of a recovering SCI patient: carving out an active role, setting priorities and managing your time. The source for much of the information can be found in a booklet by the Shepherd Center, Rebuilding Together, which can be found at www.shepherd.org.
The stage immediately after the injury will most likely consist of an overload of information that your emotionally traumatised brain cannot digest, or worse, that simply increases your anxiety and confusion. Clinicians explaining things, information leaflets on SCI, your own “Google research”, well-meaning friends, support groups – the list is endless.
So, the first step towards redefining your purpose is to take a step back, look at yourself, examine your own immediate needs and cater for them. Be selfish. Put yourself first. If you crash, you are of no use to anyone, least of all your injured spouse. “First place the oxygen mask over your own face before you help others…” Remember that while your spouse is in ICU, (s)he is fairly zonked out and not very aware of anything.
While it may be emotionally gratifying to sit and mope in the ICU visitors’ room, it is not productive and certainly not fair to your children or other loved ones. Rather use the time to shift your mind from “why us” to embracing your new spousal realities and figuring out what your new challenges are and how to overcome them.
Then when your spouse resurfaces from his or her “zonked-out” state, you’ll be in a position to contribute toward rebuilding your lives. Look into resting well, eating regular proper meals and exercising (moderately). If there are children, take care of them; make that an active and immediate purpose. Once your emotions have settled and you can think rationally again, start making lists:
• Priorities that need your time and input; personal time, children, home, work, spouse. Manage your time; draw up a manageable schedule and, where possible, delegate. If possible, make arrangements with your employer to work from home or to work flexi hours.
• List questions that you need answers to and the best people to ask.
• Get a contacts notebook of contact details of relevant people, such as healthcare providers, support groups, individuals giving pastoral care.
Organise your life. Don’t isolate yourself. There will be people who want to help, so make use of them. Here are some pointers:
• It is emotionally draining to tell the same story over and over to concerned persons. Accept a living-in support person such as a mother, a sister or a brother and ask that person to be a spokesperson on your behalf.
• Ask well-wishers and concerned persons to use SMS, WhatsApp or Facebook to communicate. In this way you can respond to messages in your own time and you can also share them with your loved one in hospital.
• Stay in touch with your case manager, who is the best source of your spouse’s progress and will guide you to eventual discharge and post-discharge needs.
• Get to know the nature of your spouse’s injury and the expected fallout such as limitations in mobility and the required mobility aids, bowel and bladder issues and how best to manage these. In this way you will develop a sound knowledge of your spouse’s post-discharge needs and whether you will be able to cope together or if you will need the services of a caregiver.
• Start a journal. It helps to channel your grief and it illustrates progress; your own as well as that of your injured loved one.
• Encourage your loved one to talk to other patients, especially those who are further along on the road to recovery. Friendships and camaraderie around shared hardship tends to inspire.
• If you feel the need, let your emotions loose; cry, scream, shout, get a punching bag (but avoid hitting doors, walls and human beings, the outcomes are not favourable). Talk to those who’re prepared to listen, including counsellors.
When your loved one moves into rehabilitation, become a support resource to the rehab team as well as an emotional support to your loved one. This can include simple things like bringing comfortable training clothes from home to make rehab feel like going to the gym.
If your spouse’s feet start swelling (as often happens with paralysis), get shoes that are one size larger, preferably rubber-soled training shoes. Remember toiletry items and bring along comfort items; books, magazines, music, a favourite pillow…
In this way your participation is active, supportive and constructive. Your loved one will take courage from this and together you can plan your future together. Work together to discover a new purpose that will bind you together so that you can rise to the challenges ahead. Then live the journey. We make the road by walking, or in this instance, by rolling…
Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, he chose a career in health administration. The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years. Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.