Caring for someone with multiple sclerosis (MS) involves unique stresses and uncertainties. The disease is unpredictable, so it’s hard to know what a person with MS will need from one week to the next, from necessary changes in the home to emotional support.
Caring for yourself
One of the best first steps you can make as a caregiver is to stay calm and assess what you need to support your loved one. Do you need help on a regular basis? Maybe you need the occasional break from the stresses and responsibilities of caregiving? Are you feeling financial pressure? Does your loved one have emotional symptoms you aren’t sure how to handle? These kinds of questions are common as MS progresses to advanced stages. However, caregivers are often reluctant to ease their own burden and take care of themselves.
The National MS Society addresses these issues in their guidebook, Caring for Loved Ones with Advanced MS: A Guide for Families. The guide covers every aspect of MS and is an excellent resource for caregivers.
Caregivers have other resources available to them, as well. Several groups offer information on virtually any condition or problem that people with MS and their caregivers may encounter.
National organizations are available to help caregivers lead more balanced lives:
- The Caregiver Action Network hosts an online forum where you can connect with other caregivers. This is a good resource if you want to share a piece of advice or feel isolated or depressed 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.
Some of the physical and emotional problems associated with MS are difficult for caretakers to resolve. To help, informative materials and services are also available to caregivers through these organizations.
A regular meditation practice can keep you stay relaxed and grounded throughout the day. Techniques that can help you stay calm and remain level-headed during stressful times include:
Exercise and yoga are both especially good for fostering your own health and reducing stress.
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 Multiple Sclerosis Society at (800) 344-4867 and ask to speak with a navigator.
Below are some of the symptoms of MS you may have to address as a caregiver. Here’s what they are, how your loved one may experience each, and guidance on how to approach these difficulties.
Bladder control issues
Loss of control over bladder function is called neurogenic bladder. 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 starting the urine stream can occur.
The National Association for Continence suggests beginning with remedies such as medications, absorbent products, and bladder training. 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. It is a surgical procedure that allows urine to empty directly from the bladder into 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. These people 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 called dysesthesia, or the “MS hug.” It’s a burning, tingling or numbness that can wrap around the waistline. Pain may also appear in the legs, feet, or arms.
MS 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.
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 can also advise caregivers on funding for lift systems and other equipment that health insurance might not cover. As a caregiver, you can also consult veterans’ organizations, fraternal groups, and faith-based organizations about help with paying for expensive items.