There are many instances and outcomes that parents do not wish to consider. The first is that one of their children will be diagnosed with a terminal illness, and one where there is no cure. The loss of a child is a sorrowful event but standing with them as a caregiver in the face of a relentless disease progression is heart breaking. There are no words to describe the experience for parents and families.
The second outcome that few people want to consider is a divorce, particularly at a time when every member of the family needs the love and support of the other. Society expects parents to stick together through sickness and in health, but the reality is that a terminal illness presents a tremendous emotional, spiritual, financial and physical strain on parents. Divorce among couples who have one or more children in health crises are common.
We will discuss the impact of stress on children with Duchenne Muscular Dystrophy and provide resources for families who require additional support to navigate the difficult journey, while cultivating a loving and stable environment for children with DMD.
What is Duchenne Muscular Dystrophy (DMD)?
The most severe form of muscular dystrophy is Duchenne Muscular Dystrophy (DMD). The disease strikes approximately 1 in every 3,600 male children. The condition is a neurodevelopmental disorder that is X-linked or a recessively inherited mutation of the dystrophin gene which is located in the human X chromosome. Dystrophin is an essential part of the structure of the cellular membrane which provides stability to the dystroglycan complex (DGC).
The symptoms of Duchenne Muscular do not reveal themselves until the age of two or three and it is prominently featured in males, but female children can inherit the condition as well. The gene can be identified at birth through genetic testing but the symptoms of the disease are pronounced and can include:
The average child with Duchenne Muscular Dystrophy requires braces and assistive devices by the age of ten years and by the age of twelve, the majority of children with the condition are required to use a wheelchair for ambulation. Abnormal muscle and bone formulation and loss create a progressive deterioration of muscle and independent movement. Children with the condition are not intellectually impaired by the condition but up to 19% of children are classified as cognitively impaired from birth.
The physical impairment of Duchenne Muscular Dystrophy and muscle wasting symptoms accelerates creating an average life expectancy of twenty five years. It is the progression of the disease and the lack of effective therapies to slow the progression that puts a painful amount of stress on families, who provide loving care at home for their child, while managing the child’s increasing decline in health.
Financial and Emotional Strain
When a child is first diagnosed with a terminal condition, it is common to see family members, employers and even the community rally with the family and provide emotional and financial support, fundraising and other assistance. As time goes on however and the child continues to grow and live with the diagnosis, support can wane at the same time as medical bills increase in tandem with increased need for professional therapies, medication and devices, as well as nursing or hospice care.
Many parents attempt to offset some of the medical expenses by providing as much personal supervision and care as possible. This choice makes sense in the beginning but as the child’s needs progress, parents who work full time and offer full time caregiving experience exhaustion, depression and frustration. The pressure of the circumstance and the grief that parents experience can create problems in even the healthiest of marriages.
In addition to being overwhelmed financially and exhausted, parents can experience a tremendous amount of guilt and self-loathing when they wish to ‘escape’ the circumstance with their child. It is in a parent’s nature to heal and nurture their children and help them grow up. Consider the grief associated with knowing that the life expectancy is twenty-five years or less? It is impossible to fathom until you have been placed in that position, but the experience has the potential to either strengthen a marriage or tear it apart.
Advice for Parents
Consulting with a counsellor or participating in a support group as a couple can help by providing a vent and by surrounding yourself with other couples who have shared (or are sharing) the same experience. Being around people who are compassionate and who understand the struggle and the emotions of caregiving and providing for a child with Duchenne Muscular Dystrophy is beneficial. It will not make you feel worse; it will help you and your spouse to understand that your family is not alone.
Ask for help from family members and friends who are willing to give you and your spouse a “night off” of caregiving duties. While it may feel uncomfortable leaving your child in the care of someone else, understand that it is essential to have some time to connect and nurture your spouse and your marital relationship. Try to differentiate between your marriage and the circumstance and share your feelings and your frustration without fear of what your spouse may say. Expression is the first step in supporting each other, and in understanding what is needed to strengthen each other and provide the best care, love and leadership for your family.
It is not to suggest that unhappy marriages should stay together exclusively for the needs of a child with a terminal health condition, but from a financial, logistical and needs perspective a family that is whole can provide the supports needed to provide care to a child with Duchenne Muscular Dystrophy. Families are stronger together, and can stay together with support from relatives and their community.
If salvaging your marriage is not possible, consulting with a family law lawyer in Chicago will help you to define your financial and care responsibilities for your child. Some people are able to successfully co-parent and share responsibilities after a divorce while maintaining a positive and supportive relationship with their children.
As stress can lead to further health complications for a child with Duchenne Muscular Dystrophy a united, positive environment should be sustained to avoid concern. We encourage you to explore the many resources available online to assist parents to understand the stress associated with hospice care and specific to DMD.