Perhaps nothing will test a marriage more severely than one spouse’s developing a chronic, long-term illness or disability. When two people marry, they expect to share the responsibilities of life, to communicate with each other on the deepest levels, and to give and receive love. Marriage is a delicate balance, in which both partners naturally expect the equal participation of each other in their life together. This means sharing in household chores, child rearing, insuring enough income, making major decisions together, and mostly, supporting each other emotionally—enabling each other to feel secure and loved.
All marriages have challenges, and maintaining the proper balance between partners whereby they both can thrive takes lots of love and dedication. Plenty of “healthy” couples are undone by differences which lead to divorce, or at least to the need for counseling. But when a serious, long-term illness is thrust upon one partner, some extent of havoc surely will be wreaked on the marriage relationship.
As an ill spouse becomes more ill/disabled, the well spouse gradually must take on a greater portion of household responsibilities in addition to managing the ill spouse’s illness. In the most extreme situation in which the ill spouse can no longer do anything, and needs help with everything, the caregiving spouse must take complete responsibility for every aspect of both their lives, from basic daily needs to home maintenance, finances, and parenting (if there are young children). The well spouse may begin to feel resentful and burdened; the ill spouse may become depressed and/or angry at the loss of independence, or demanding and over-possessive of the well spouse. The all-important communication factor may start to break down, as both partners experience growing fatigue, frustrations, and anxieties. Add to all this the decrease or loss of emotional and physical intimacy, and you might ask, “How is this a marriage?”
Simply put, IT’S NOT FAIR!! Statistics indicate that 80% of couples whose marriage is impacted with a serious illness will get divorced. If a marriage was not very strong before the illness, it could be impossible for a spouse to become a caregiver. Those who stay in the marriage and stay dedicated to the caregiving do not have an easy or clear path, no matter how great the love in the relationship. Caregiving spouses need to develop new strategies to re-balance the great un-balance in the marriage. In upcoming blogs, I’ll discuss ways of coping with the various issues in the well spouse/ill spouse marriage.
The physical and emotional demands of spousal caregiving are astronomical, but there are ways to cope: it’s a learning experience which can lead to the caregiver’s mastering new skills, discovering the more meaningful aspects of life and marriage, and a greater self-knowledge as the caregiver finds ways to extricate and express his/her own passions and talents. Somehow, we humans are adaptable, and we are usually able to redefine our marriages and maintain the love within the framework of the illness. Meanwhile, if you find yourself in the position of caring for an ill spouse/partner, there is help at the Well Spouse® Association (www.wellspouse.org), a community of spousal caregivers who offer invaluable understanding and friendship.
About the Author
Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband Vince since 2004. Vince is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome (FXTAS). Terri is on the Board of Directors of the Well Spouse® Association (www.wellspouse.org), which offers support and resources for spousal caregivers. She also serves as the association’s PR chairperson and the editor of their quarterly newsletter Mainstay. She has published articles, and has been interviewed for magazine articles and on radio shows about FXTAS and the unique challenges of spousal caregiving. Although not formally trained in caregiving, Terri has, by necessity, become well-educated in the trials of family caregivers.