Multiple Sclerosis Caregiving: Advice for Spouses and Partners
When Multiple Sclerosis is Part of Your Relationship
Although the emotional impact of living with multiple sclerosis is obviously difficult for people with the disease, it can be tough on those closest to them, too. Besides supporting a loved one with multiple sclerosis, you must take care of yourself to stay healthy and be the kind of caregiver you want to be. It's important to find a balance and not get caught up in the what-ifs or fear of the unknown in your relationship. Instead, try to stay in the present and remember to look for the positives that come your way each day. "Multiple sclerosis affects the whole family, but not always in bad ways," notes Benjamin Greenberg, MD, deputy director of the multiple sclerosis program at the University of Texas Southwestern Medical Center in Dallas. "People learn to overcome challenges together, and this can strengthen bonds among loved ones."
Dealing With the Emotions of MS
Facing a chronic, often debilitating disease like multiple sclerosis can challenge even the strongest individual. One way to deal with the emotions of multiple sclerosis is to share your thoughts and concerns with your loved one as well as his or her doctor. Go along to doctor's appointments if possible so you can be actively involved in ongoing dialogue about treatment. By talking directly with his or her doctor, you can have your questions and fears addressed by knowledgeable medical professionals, too. A partner who was your source of emotional support before his or her multiple sclerosis diagnosis probably won't want that to change going forward. Make a conscious effort to keep the lines of communication open and continue to lean on one another for support. Seek out a counselor if you need assistance getting back on track. "Learn what support your partner needs from you and what support you need from him or her," Dr. Greenberg advises. "It's about both of you."
Deciding who to tell about a multiple sclerosis diagnosis, how much to tell, and when to tell it are personal decisions to be made by the person living with multiple sclerosis. If your loved one asks you not to share his or her diagnosis with others, honor and respect that request. There's no shame in having multiple sclerosis, but concerns that other people may treat the person differently once the diagnosis is disclosed are valid. Be careful about sharing information with friends who may repeat the information to others. Inadvertently disclosing your loved one's diagnosis to someone who could in turn pass it along to an employer or co-worker could negatively affect the person's treatment at work. Even though job discrimination based on disability is against the law (as long as the employee can continue doing the same job with reasonable accommodation), it's possible that people will jump to conclusions about future productivity and base decisions for career advancement on those assumptions. Discuss who needs to know about the diagnosis, and share this personal information only with agreed-upon family and friends who will protect your loved one's privacy.
Telling Your Children
It's natural to want to protect children from anything frightening or painful, but when a parent is living with multiple sclerosis, symptoms are going to show themselves whether children have been told about the diagnosis or not. Maintaining an open dialogue and encouraging questions will help to reduce fear of the unknown and lessen the burden of worry in children. The way you explain multiple sclerosis to your children should be compatible with their ability to process the information. "Depending on the age of the child, the explanation can be quite different," Greenberg explains. "Children need to know that their parent will be okay. They need to know that there may be good days and bad days, and on bad days, their parent may need their help or extra time to rest."
Enjoying Sex and Intimacy
"Sex and intimacy are greatly affected by multiple sclerosis," Greenberg says. "Partners can have diminished sensation, difficulty achieving climax, or decreased interest in sexual activities." Although it may feel uncomfortable, it's important to discuss these issues openly with your doctor. Multiple sclerosis can create barriers to intimacy, but by disclosing any problems, your doctor can recommend treatments to address your specific concerns. With specific treatments or modifications, many problems can be resolved so that the level of sex and intimacy you're used to enjoying with your loved one can remain intact.
Joining Support Groups
Multiple sclerosis support groups come in all shapes and sizes. There are groups for couples, for individuals, for caregivers, for children, and more. "Support groups are one way to become part of a community of individuals with shared experiences," Greenberg says. "Understanding that people with multiple sclerosis and their spouses aren't alone in their fears or challenges can be reassuring. Other people with multiple sclerosis and their families are often great sources of ideas and support to help overcome common barriers." Your doctor or your local hospital can help you find support groups in your area. You can also check the Web site for resources.
Arming Yourself With Information
One of the best ways to help a loved one manage multiple sclerosis is to become informed about the disease. Understanding multiple sclerosis symptoms and how to respond when they occur can help relieve undue stress and strain on you and your loved one. Learn everything you can by talking with your loved one's doctor, joining a support group of individuals with similar experiences, and visiting the various multiple sclerosis association Web sites.
Modifying Your Home
There are steps you can take to prevent multiple sclerosis from interfering with life at home. Create a living space that's safe and easy to maneuver around, use ramps rather than stairs, and put grab bars in tubs or showers if your loved one has difficulty walking, Greenberg suggests. Little adjustments can make everyday actions easier for the person living with multiple sclerosis, such as:
- Adding non-slip tub decals to the bathtub or shower if poor balance is an issue.
- Offering a terrycloth robe instead of a towel for drying off after a bath or shower.
- Switching to pump dispensers for shampoos, conditioners, toothpaste, and cleansers.
- Replacing regular dental floss with flossing swords.
- Installing nightlights around the house to compensate for vision loss.
Your loved one will need to learn how to conserve energy when dealing with symptoms of multiple sclerosis. You may need to give a little nudge to remind him or her to slow down if you notice that too much effort is being exerted. Be supportive by offering to take on a responsibility that must be completed if that's what it takes to get him or her to rest. Assure your loved one that it's okay if tasks are left for later, as long as they eventually get finished. Enlist the help of others or hire someone to clean the house and do other small jobs if necessary.
Taking Time for Yourself
If you're a caregiver for a loved one with multiple sclerosis, you must also take care of yourself in order to stay engaged with those you care about. Neglecting your own needs can lead to resentment, which can become harmful to the relationships you value. Allow yourself time to occasionally shift your focus to things other than multiple sclerosis care. Make plans to visit a friend, schedule a massage or pedicure, pick up that book you've been wanting to read. Don't neglect your own health because you're too focused on the needs of everyone else. Remember to schedule your own routine physical exams so that you stay healthy for yourself as well as those you love and take care of.
Video: CARING FOR MS CARE PARTNERS
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