Caring for someone with multiple sclerosis (MS) involves unique stresses and uncertainties. The disease is unpredictable. Caregivers may not know from one week to the next how MS will affect the patient. The patient may experience dramatic mood swings. They may also confront new physical challenges that could require changes to their environment.
One of the best first steps as a caregiver is staying calm and assessing what you need to support your loved one. Do you need help on a regular basis? Or just an occasional respite from the stresses and responsibilities of caregiving? Are you feeling financial pressures related to the disease? Does your family member display emotional symptoms you aren’t sure how to handle?
These kinds of questions are common as MS progresses to advanced stages. The National MS Society addresses these issues in their 114-page booklet entitled “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.
Caregivers should learn about the many resources available to them. Several groups offer literature on virtually any condition or problem that MS patients and their caregivers may encounter. However, caregivers are often reluctant to ease their own burden and take care of themselves.
Several national organizations are available 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.
A regular meditation practice can keep you relaxed and grounded throughout the day. Exercise, music therapy, pet therapy, massage, prayer, and yoga are all techniques that can help you stay calm and remain level-headed during stressful times. Exercise and yoga are both especially good for fostering your own health and reducing stress.
Some of the physical and emotional problems associated with MS are quite difficult for caretakers to resolve. Informative materials and services are also available to caregivers through the aforementioned organizations and more. Other groups that address specific areas of concern are mentioned in the following sections.
Loss of control over bladder function is called neurogenic bladder. It is one of the most exasperating physical symptoms of MS. This condition can occur when the nerves and muscles of the urinary system don’t work together properly. The bladder may become underactive or overactive. Leaking, discomfort, or difficulty initiating urination can occur as a result.
The National Association for Continence suggests beginning with noninvasive remedies such as medications, absorbent products, and “scheduled toileting.” If the problem continues, more invasive options are available. They may include the insertion of a suprapubic catheter. This is a tube inserted into the bladder through the abdomen. This is a surgical procedure that allows urine to empty directly from the bladder to an external collection bag.
People with MS often experience sharp facial pain called trigeminal neuralgia (TN). It can be brought on by facial movements as simple as yawning or grinning. They may also feel pain in their legs. TN is often described as burning, aching, twitching or muscle cramping. It may even be experienced as an electric shock-like pain called Lhermitte’s sign. This sensation travels from the head to the spine. Another pain unique to MS is callededysesthesia, or the aMS hug”. It is an unpleasant burning, tingling or numbness that can wrap around the waistline. Pain may also appear in the legs, feet, or arms.
This type of pain may respond to a number of different medications or other treatments. It may be possible to wrap painful legs or hands in pressure stockings or gloves. This may convert the sensation of pain to one of pressure. Warm compresses may also help. Your doctor may recommend NSAIDs, steroids, anticonvulsants, or antidepressant medications.
The National Council for Independent Living is a national network for people with disabilities. They offer technical advice, advocacy, and training to help these people stay in their own homes. They also can advise caregivers on funding for lift systems and other equipment that health insurance might not cover. Caregivers can also consult veterans’ organizations, fraternal groups, and faith-based organizations to see regarding assistance paying for expensive items.
Learn to recognize the signs of burnout in yourself. The signs resemble the classic symptoms of depression:
- emotional and physical exhaustion
- diminished interest in activities
- trouble sleeping
- feeling as if you’re on the verge of tears
If you recognize any of these signs in your own behavior, call the National MS Society at (800) 344-4867 and ask to speak with a navigator.