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For thirty-two of our thirty-four years of marriage, my wife had multiple sclerosis. As with many people with relapsing-remitting MS, my wife, Virginia, led an active and mostly healthy life for many years after her initial diagnosis, with occasional exacerbations that sent her to the hospital for steroid treatments and later to home care for the same treatments. Our daughter learned to walk by holding on to her mother's portable IV stand.
Virginia’s main problems for many years were with mobility: moderate difficulty moving her legs, then foot drag, then great difficulty moving her legs. We walked and ran together and played Frisbee during her first decade with the disease. But after fifteen years, MS began to assert itself. During the second decade, we still walked together, taking our two children to the park and on vacations, but active playing was over. By the end of the second decade with MS, Virginia needed a cane or a walker for short distances and a manual wheelchair for longer ones.
Family systems theory would say – accurately – that our roles reversed and our characteristics changed. Initially, Virginia was the spontaneous, fun-loving person in our relationship, and I was the circumspect, cautious one. In the natural process of learning from one another, we each moved toward the other, but MS hastened this reciprocal change. After twenty years, I took over the planning of fun (I never could manage unfettered impulsivity) and Virginia worked with me, mostly following along.
Soon, her world began closing in, and most of our travel consisted of visits to specialists helping with her worsening health problems. Many people who casually think about MS don’t realize that MS is a full body experience, involving more than difficulties with mobility. Every system in the body is compromised, including digestion, circulation, vision, hearing, breathing, swallowing, the intestines, the kidneys, and the brain. After twenty-seven years with MS, Virginia had to quit her job as a family therapist and divorce mediator.
Anger and remorse accompany love and mutual support. One evening, while I was changing from my work clothes, Virginia tried to carry a large pot of homemade pumpkin soup into our dining room, balancing the pot on the platform of her walker. Unfortunately, the pot slipped from the walker and bright orange soup splashed over our white carpet. When I saw what had happened, I scolded and fumed. You know you can’t do that! Why not let me carry the soup?
The next day I apologized, but not until we both had very bad nights.
Lessons for caregivers helping a loved one with MS
• More than 80% of MS diagnoses are relapsing-remitting MS, which means periods of disability followed by periods of recovery. The diagnosis also means a good chance of an active, adventurous relationship for decades.
• MS is unpredictable, so work to accept the inevitability of change. Expect something new nearly every day – including improvement.
• Be prepared to know that you will not always know the right thing to do.
• As a caregiver, you will get angry – at your spouse, at the disease, at doctors who seem uncaring or unwilling to look at the whole patient. Prepare for this anger and try to direct it at the responsible party: the disease.
• Some friends, relatives, and acquaintances will understand what you are going through and some will not. Most casual observers will not.
• Do not be too hard on yourself, or too easy. Don’t condemn yourself when you behave poorly and don’t congratulate yourself when you behave well – especially when other people say how admirable you are. You are not admirable. You are simply muddling through, doing the best you can.
• If someone tells your spouse how lucky it is that you are providing care, clearly point out what is obvious to you: that your spouse contributes as much to your relationship as you do.
• Be prepared for service people who don’t understand partial disability. When boarding a plane, for example, after my wife got out of her wheelchair at the end of the jetway and began moving very capably to her seat, the flight attendant shouted, “Stop! You can’t walk.” This is not to say that people are stupid or mean, but that partial disability is complicated. Be prepared to educate others, politely if possible.
• Talk to psychologists, nurses, and other specialists, and try to improve your caregiving. But don’t take to heart the harsh judgments of those who don’t understand.
• Be patient with those who seem abundantly upbeat as well as those who are quick to point out the deep moral lessons of illness.
• Able-bodied people will park in spots reserved for disabled people. Feel free to get angry, but maintain a sense of proportion. What they are doing is illegal, but they are not evil people; they are merely inconsiderate or oblivious.
• When you are out together and someone asks you what your spouse wants, direct them to your spouse. Disability does not mean invisibility.
• There will be good times and humor throughout all phases of the disease.
• You will always be learning.
For more information about the author see http://www.professorkraft.com/
