Paula Gaedtke, mother of two young children, had been the "busiest and healthiest" she had ever been, finding time and energy for regular exercise, family activities, recreational softball and performing as a clown, all while dedicating 45 - 50 hours a week to her career as an information technology professional. But then in 1997, Paula's life - and her entire family's - was turned upside down when she was diagnosed with a relapsing form of multiple sclerosis (MS) after problems with her vision and balance. Since then, Paula, now age 40, has slowed down her hectic life and has leaned on her husband and their children for physical and emotional support.
MS is a chronic, progressive disease of the central nervous system that affects an estimated 400,000 Americans and close to 2.5 million individuals worldwide, according to the National Multiple Sclerosis Society. The onset of MS usually occurs between 20 and 40 years of age, and is twice as common in women than in men.
Since MS usually strikes at the prime of an adult's life, a diagnosis of MS can be particularly devastating. For people who have prided themselves on being in top physical condition, a diagnosis of MS can lead to fear, denial, anger and questions like "Why is this happening to me?" While these are the emotions of someone with MS, they also resonate with the family and friends who love and care for those with the disease.
Caring about someone with a chronic illness can often change the dynamic of a relationship. For Paula's husband, Doug, he has lived his promise, for better or worse, without any hesitation. He has been there for the many doctor visits, helping Paula get on medication right away and even giving her the injections she needed for the first year she was on treatment. Doug also encouraged Paula to implement changes in her life that will benefit her long term, such as reducing her work schedule. Her children even notice when Paula starts to lose patience, as it often signals her fatigue, and they make an extra effort to help their mom finish tasks so she feels less guilt about going to bed early.
"MS affects the whole family, and I think what's most important as a care partner is to be understanding and supportive, to be there for the good times and those times that are not so good," explains Doug. "As a spouse, you also need to remember all the things that make a marriage work: communication, sharing and love. For Paula and me, we have always had a great relationship, but throwing in MS - something this life altering - has not made us different. We are still very much in love, and even more understanding of each other."
The responsibility of a care partner is unique in every situation. Some care partners must deal with financial constraints in cases where there is a loss of income or additional healthcare costs. Others may need to make adjustments due to the physical effects of MS, which might include moving the bedroom to the first floor for easier accessibility. And, then there is the emotional support that is the core of every care partner experience.
If you are caring for a loved one with MS, following are a few helpful tips:
• Learn as much as you can about the disease and available treatment options.
• Find a balance between providing support and assistance, while allowing your loved one to maintain their dignity and independence.
• Help your loved one know they are not alone in their fight with MS - it can have positive and long-reaching health and emotional effects.
• Take time for yourself, too, in order to reduce stress and help prevent burnout.
• Check out MS LifeLinesSM, a free resource sponsored by Serono and Pfizer, developed with the guidance of people with MS - for people with MS and their care partners.
More information is available at www.MSLifeLines.com or by calling toll-free 1-877-447-3243.
"Enjoying life and keeping it as normal as possible is what we intend to do." - Doug Gaedtke |
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