Caring for a seriously ill spouse can trigger relationship challenges. In the process of change, you can lose your best friend, your lover, and your future as you both had imagined it. Promises will change from words spoken in oath on your wedding day to deeds of care in your mostly (but not exclusively) older years. The new caregiver morphs from a loving spouse into their new role, which is an entirely different sort of relationship of primary service. In more tragic cases, the caregiver can become distant to the marital bond, struggling with feelings of loss, fear, anger, resentment, or misunderstanding.
It's a situation no spouse looks forward to on either side of the equation. A loving couple does not look forward to the day when they either must watch and tend to the mortal decline of their spouse or, conversely, be the spouse who feels wracked with guilt, knowing their health problems are placing a tremendous care-giving burden on their spouse. No matter the desire to avoid the experience, very few married couples will elude the complication that serious illness brings to their shared lives. Sadly, the needs of the care-giving spouse are often overlooked at a time when they need renewed strength to support their partner in new ways.
The care-giving pressures exerted on a spouse are significant. According to an analysis of 168 studies, while the care-giving spouse will protect their mate, they report more symptoms of depression, lower levels of psychological well-being, and more significant physical and financial burdens. To cope with the changes presents challenges, and sadly, the longer you have been married, the more difficult the process of rewriting the relationship's rules and expectations become. Early on in the illness diagnosis, spouses are unclear as to how to handle the short-circuit in communication and productively process their feelings.
Many new spousal caregivers will feel the complications of isolation. Family members and close friends may not visit, not help, or even ignore the couple struggling to create new behavioral norms. Health Affairs reports that 55 percent of older spouses experience their end of life care-giving years without help from children, other family members, or even paid home health aides. The entirely new sort of relationship that becomes forged between husband and wife becomes defined by illness and lost emotional connections. "Social distancing" guidelines related to the COVID-19 outbreak make the risk of social isolation even worse.
The need then becomes the focus on what to do to improve the situation. The first is the care-giving spouse needs an accurate understanding of the condition, treatment, prognosis, and needs of their ill spouse, whether they are diagnosed with dementia, cancer, heart failure, kidney dysfunction, or another serious illness. The information needs to come directly from attending physicians and health care providers. Caregivers need to participate in medical appointments and become an active participant in identifying health and wellness issues and potential fixes. Medical recommendations need to be prioritized so that the caregiver can be a positive, encouraging reinforcement rather than a nagging, stress-inducing reminder that can trigger frustrations on both sides.
If family and friends are willing to help lighten the load, it is important to accept help. Housekeeping, running errands, providing casseroles, transportation, visiting - anything that can reduce your workload as a caregiver is essential to accept graciously. Review your insurance plans, as many give some level of coverage of home nursing services, occupational therapy, and physical therapy. These services can improve your partner's functioning and safety in your home.
Share as much time as reasonable with your spouse, listen to their thoughts, and spend time in quiet reflection. Follow routines that are established patterns in your life together. A Friday "movie night" with popcorn, walking the dog, or sharing morning coffee as a continued routine helps to keep a sense of continuity in the face of the unknown.
Recognize that you are not alone in your struggle. Authors Barbara Kivowitz and Roanne Weisman have written about their journeys as the care-giving spouse of a seriously ill mate in a book entitled Love in the Time of Chronic Illness: How to Fight the Sickness – Not Each Other. The most poignant recommendation describes shifting the notion of care-giving from a set of daily responsibilities to an act of expressing compassion. Kivowitz encourages couples to “measure success by how well you connect, love and feel loved.” Don't let a serious illness shake the foundation of your marriage. Identify your roles and set structure to address the issues at hand, and in the face of the unknown, you both will be better for it.
If you have questions or need guidance in your planning or planning for a loved one, please do not hesitate to contact our Winthrop office by calling us at (207) 377-6966.