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ALS: The Uninvited Family Member

Posted By Tara Signs, Tuesday, January 6, 2015
Couples describe the overwhelming feelings of anxiety and the “scariness” of this life-threatening illness


Over the last several years, I have worked as a medical family therapy (MedFT) intern at a teaching hospital. I work with families and couples who experience a variety of life-altering illnesses. Within this past year, I have had the opportunity to work onsite at a neurology clinic where I quickly became familiar with the fast paced environment and practice of MedFT in a clinic setting. In this clinic, I see patients who experience amyotrophic lateral sclerosis (ALS), often called Lou Gehrig’s disease, myasthenia gravis, and muscular dystrophy.

Couples who are experiencing ALS are required to adjust and adapt to the demands of this illness, both physically and psychosocially. Muscle weakness and paralysis spread throughout the entire body, leaving individuals with the inability to perform daily activities such as showering, dressing, walking, and getting in and out of bed. As the debilitating illness continues to immobilize the individual, breathing, swallowing, and chewing become severely affected. Often times, individuals grieve the loss of the roles they once had and the inability to use their hands, arms, and legs. Most couples describe the overwhelming feelings of anxiety and the “scariness” of this life-threatening illness, the inability to be independent, and the financial strains it has on the family. The rollercoaster of emotions of depression, anger and guilt are appropriate responses that couples are faced with as they endure this unexpected journey.

Recently, I encountered a couple that reminded me about the beauty of medical family therapy. This was the first time I had seen the couple since I had started at the clinic. The husband was diagnosed with ALS several years ago, and unfortunately it had progressed faster than the couple expected. Given this was our first meeting; I was interested in their story. They described their daily struggles, new roles, and the demands of ALS with their family. The husband described what it was like transitioning from full function of his arms and legs to completely relying on a motorized wheelchair for transportation. He spoke of the unbearable pain he experiences as his muscles began to weaken. The wife spoke of the transition of her husband having to sleep in a hospital bed due to comfort and drastic changes in his body. As she told her story, her face said something different. The toll that illnesses have on caregivers can become emotionally exhausting and painful to experience. The couple described the emotional burden that lies heavy with them as they watch this illness progress. They discussed the anxiety that is instilled in them because of the fear of what the next day may look like. The pressure of wanting to spend adequate time with family members can also increase levels of depression and anxiety. These are appropriate and normal responses as families and couples experience illness.

They described the emotional burden of watching this illness progress


Despite the difficulty of talking, the husband tearfully described their young children. It appeared this part of their story was hard to share. It was difficult for the couple to make eye contact as the wife described the most recent crisis in their family. The wife began to cry and grasped on to her husband’s arm as she described her oldest child’s attempt to end her own life. The husband described the recent impulsive behaviors of their other child. The couple began to cry and question what was happening to their family. Their unconditional love for their children poured out as they described what they had done for their family through this journey. A part of my job is to ask tough questions. I sat with this couple and talked about what the children understood about this uninvited family member, the illness. I asked if the family had the opportunity to sit and discuss the scariness of Dad physically changing or not being able to be as active as he used to be with the kids.

As these questions were asked, the couple sat there in tears looking at each other. The wife responded that her husband’s illness was not really discussed. She mentioned the family sit-down about what was wrong with dad, but nothing about the physical changes or that it is a terminal illness. Like with many debilitating illnesses, sometimes the illness takes over the family. The couple was encouraged to talk about how this illness has taken control of the family and their ideas of putting ALS back into its place.

As we sat there for 45 minutes, the couple dialogued with one another about how scared their children must be. In some ways, as the conversation continued, the couple seemed to have a sense of peace about where they were in this process. They discussed that the children probably feel scared to ask what is happening to their Dad because it hasn’t been talked about. At that moment in time, it seemed like a weight had been lifted off of the couple. The couple felt relieved knowing that there was hope to overcome the struggles they were experiencing as a family. It seemed the couple understood that the children felt hidden in the dark with their father’s illness and maybe that these children didn’t know what else to do. The husband voiced the possibility that his children’s behavior might be related to not communicating openly about his illness. The couple also had discussion about a family meeting and what that would look like. At the end of my time with them, I realized the open dialogue the couple had about illness in their family created permission to be vulnerable and open with their children.

As therapists, it is important to elicit each family member’s experience of the illness and to create an atmosphere that feels safe to share. As we guide couples and families to have open communication about their needs, desires, fears, and hopes, they are able to recognize how the illness affects themselves as well as their relationships. This process creates a balance between individual and relationship needs, which is a way to put illness in its place.  Through this specific experience, the couple was able to recognize and understand their fears, emotionally share where they were both at in this process, and collaboratively come up with ideas for each family member to have the opportunity to discuss their own experience and meaning of the illness.

Tara Signs is a doctoral student in marriage and family therapy at Texas Woman's University in Denton, Texas.  

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