Caring for someone with multiple sclerosis (MS) brings stresses and uncertainties not experienced in any other type of caregiving. The disease is unpredictable; families cannot know from one week to the next which direction the MS will take, whether the patient will display dramatic mood swings, or which changes need to be made to the environment.
The best first step is to calm yourself and assess what you really need in order to support your loved one and manage the MS effectively, advises the National Multiple Sclerosis Society. Do you need help on a regular basis, or just an occasional respite? Are you feeling financial pressures related to the MS? Does your family member display emotional symptoms you aren’t sure how to handle, such as depression or grieving?
Such questions are expected as MS progresses to the advanced stage, and the National Multiple Sclerosis Society addresses them—and many more—in their 114-page booklet, “Caring for Loved Ones with Advanced MS: A Guide for Families.” The publication covers every aspect of MS; it is an excellent resource for caregivers and families and can be downloaded from the Society’s website free of charge.
Caregivers are next advised to learn about the many resources available to them. While the MS Society offers literature on virtually any condition or problem that can be anticipated by patients and their caregivers, too often caregivers are reluctant to ease their own burden and take care of themselves. Several national organizations are there to help caregivers lead more balanced lives:
- The National Family Caregivers Association hosts an online forum where you can connect with other caregivers if you feel depressed, want to share a piece of advice, or feel isolated and want to talk with others who might be experiencing the same thing.
- The Family Caregiver Alliance provides state-by-state resources for caregivers, including respite providers.
- At Strength for Caring, viewers find not only tips for giving daily care to their loved ones, but advice on the best ways to care for themselves. Exploring the site yields such valuable information as how to ask for support from your family and how to hire the right help for your needs. The site, sponsored by Johnson & Johnson, also hosts message boards where you can connect with other caregivers.
A regular meditation practice can keep you relaxed and feeling “grounded” throughout the day. Exercise, music therapy, pet therapy, massage, prayer and yoga are other fairly easy techniques for staying calm and level-headed during stressful times.
Some of the physical and emotional problems associated with MS are quite difficult for caretakers to resolve. The MS Society addresses them in its literature. Informative materials and additional services are provided to caregivers by several other organizations as well:
Bladder care. One of the most exasperating physical symptoms of MS, loss of control over bladder function is called neurogenic bladder, a condition caused when the nerves and muscles of the urinary system don’t work together properly. The bladder may become underactive or overactive, resulting in leaking, discomfort or difficulty initiating urination.
The National Association for Continence suggests beginning with unintrusive remedies such as medications, absorbent products and catheters. If the problem continues, options such as a suprapubic catheter, which involves inserting a tube into the bladder through the abdomen, and surgical procedures to divert the urinary system, are available.
Pain. People with MS often experience a sharp facial pain called trigeminal neuralgia, brought on by simple facial movements such as yawning or grinning. They also feel pain in their legs often described as a burning, aching, twitching or muscle cramping, or an electric shock-like pain called Lhermitte’s sign that travels from the head to the spine. Another pain unique to MS is called dyesthesias, or the “MS hug”—an unpleasant burning, tingling or numbness that can wrap around their waistlines. The American Pain Foundation recommends NSAIDs or steroids, anticonvulsant or antidepressant medications, all of which have shown effectiveness in combating these acute pains. It also can help to make sure your loved one’s water intake is balanced with sodium and potassium.
Mobility issues. The National Council for Independent Living is a national network offering technical advice, advocacy and training to help people with disabilities stay in their own homes. They also can advise caregivers on funding for lift systems and other equipment that might not be paid for by health insurance. The MS Society suggests that, for expensive items, caregivers also consult veterans’ organizations, fraternal groups and faith-based organizations to see if they offer assistance.
Caregiver burnout. Finally, learn to recognize the signs of burnout in yourself. They resemble classic symptoms of depression: emotional and physical exhaustion, diminished interest in activities, sadness, irritability, trouble sleeping, feeling as if you’re on the verge of tears. If you spot these signs in your own behavior, call the National Multiple Sclerosis Society at (800) 344-4867 and ask to talk with a Navigator.