Gabrielle Giffords and her husband face a life changed forever

Ruth Brickman, MSW, RSW, is a Social Worker with the Memory-Link program in the Neuropsychology and Cognitive Health Program at Baycrest.

Like so many others, I have been extremely moved by the remarkable recovery of U.S. Congresswoman Gabrielle Giffords since she was shot in the head by a gunman, suffering a devastating traumatic brain injury. The grace and courage demonstrated by her and her husband, retired American astronaut Mark Kelly, has been extraordinary.

During recent media attention of Giffords’ first anniversary since the shooting, Kelly hinted at the loss he and his wife have both endured. “We’ve had new realities to live with – the reality of letting go of the past,” he told The New York Times.

My perspective on their situation is influenced by the work I do as the social worker in the Memory-Link program here at Baycrest. In fact, one of the integral aspects of my role is to facilitate an ongoing support group for the spouses of our amnestic clients.

Amnesia is the permanent disruption of memory that sometimes accompanies a neurological event or illness. The most disabling aspects of amnesia involve prospective memory (the capacity to perform a task in the future) and episodic memory (the capacity to consciously recollect an event from the past). Memory changes of this sort can rob an individual of his or her independence and create stress and burden for families.

Memory-Link is a unique outpatient service established to assess, train, and support adults with amnesia. Our multidisciplinary team works with the person with amnesia, as well as that person’s immediate family and other members of their support system.

We all know that maintaining a solid marriage can take much effort during the best of times, and that not all marriages survive the complications and issues of day-to-day life. For some couples, after one partner suffers a brain injury the challenges prove too difficult and the marriage does not survive.

Many other couples persevere and sometimes even grow stronger after a devastating brain injury. I have been privileged to witness many such relationships, and have learned a great deal about the struggles and issues involved.

The initial relief one feels when a spouse has survived a traumatic event can slowly evolve into a realization that the spouse has been irrevocably changed. Partners in this situation have described feeling a grief that never ends. They cannot help feeling that the person they married is gone forever. One woman described that it’s like "living with a ghost" – she sees her husband in front of her, but he’s not really there. Our clients have become resigned to this “new normal” and have wondered, “Is this it then? Is this all I have to look forward to?”

Spouses describe feelings of utter exhaustion, now having to fulfil the roles of both partners in the marriage. These can include parenting, household chores and tasks, errands, planning and managing finances. And those injured are often in the prime of their lives, decades before their spouse might have expected to take on these additional roles.

Partners of those with amnesia feel guilty for sometimes getting angry or impatient with their spouse, when, for instance, they’ve asked the same question for the tenth time in an hour. This is similar to the experience of a caregiver when their spouse has a progressive dementia, such as Alzheimer’s disease or frontotemporal dementia (FTD). What’s unique about acquired brain injury is the early and sudden onset and the “invisible” nature of the condition. This is one of the reasons it is vital that these spouses have counselling and support available to them.

Spouses who attend the ongoing Spousal Support Group at Memory-Link tell us they derive enormous benefit from having a safe place to express their feelings about this experience. They know that when they’re sitting with other Memory-Link spouses, they can speak about anything, and the other participants “get it.” The transformative power of attending a support group and feeling genuinely understood is remarkable. And helping others through their experience adds to feelings of competence and strength for those spouses a little bit further along on the journey.

So how do these marriages survive, and sometimes even thrive? It’s often with the same ingredients present in any successful marriage: mutual respect and love, the pursuit of shared and individual interests, a supportive network and a good sense of humour. I’m privileged to witness grace and courage every day.

Ruth Brickman, MSW, RSW, is a Social Worker with the Memory-Link program in the Neuropsychology and Cognitive Health Program at Baycrest.  She has worked in other areas of the centre, including Baycrest’s Apotex Centre, Jewish Home for the Aged and the Community Day Centre for Seniors, and at other community agencies working with older adults.