If your loved one is diagnosed with multiple sclerosis, MS, your doctor won't be able to tell you exactly what to expect. What he might say is that it's an unpredictable disease, and it's time to get prepared.
Multiple sclerosis is a chronic and progressive disease that's characterized by unpredictability. MS is often diagnosed in young adulthood, and patients require care for a longer period of time than many other chronic diseases that present later in life. MS caregivers have a different profile than most other caregivers, and often spouses and partners fall into the caregiver role when they had anticipated a life of equal partnership.
For these reasons and more to be discussed, MS presents caregivers with a unique set of challenges and burdens.
A new report from the National Alliance for Caregivers finds that family caregivers for MS patients have greater physical, mental, and financial burdens than the general family caregiving population.
dailyRx spoke with Kimberly Koch, vice president of programs and services at the National MS Society about the challenges that MS caregivers face, and how best to deal with the unpredictable nature of the disease.
A Multiple Sclerosis Diagnosis
“Someone may be diagnosed with one type of MS, but how they respond and the symptoms they're experiencing is going to vary from person to person,” Koch told dailyRx. “What people need to do when their loved one is newly diagnosed is to really become educated about the disease.”
Multiple sclerosis attacks the central nervous system, and it affects each patient differently. Symptoms range from cognition problems, to mobility issues, to blindness, difficulty speaking, and more.
Scientists are still learning how multiple sclerosis progresses. What they do know is that it destroys myelin, the protective sheath that covers nerve cells in the brain.
When myelin is destroyed, signals that communicate through the brain are disrupted. That translates to the loss of functioning over time.
One of the things that caregivers need to be prepared for is periods of attacks and recessions, and the changes that they may bring to daily life, said Koch.
“It can be different from minute to minute, hour to hour. Someone may be having a symptom at this moment, and a few hours later, it's gone. Or the symptom may never leave,” she said. “You may be able to recover, and life continues on like nothing ever happened, or other people experience an exacerbation and they never completely come back from it.”
Koch advises that the best way to deal with this unpredictability is to arm oneself with trustworthy information, support, and resources.
Koch helps run the caregiver initiatives for the National MS Society, and she recommends getting in touch with the organization to gain access to resources. She also recommends the group Can Do Multiple Sclerosis, a partner of the National MS Society.
Life For Caregivers
Because MS is diagnosed often in early adulthood, the profile of a caregiver skews younger than the general population of caregivers. Spouses or partners may be the primary caregiver, or parents for adult children.
For MS caregivers, plans are never reliable. They may plan an outing or vacation, and have to cancel because their loved one isn't feeling up to it, or their symptoms prevent them from participating.
That's just one way that life changes for caregivers of MS.
MS has a long life cycle, which means that caregivers will be providing care for a longer period of time than other chronic diseases. The mean duration of MS is about 30 years, and it can reduce life span by 5 – 10 years.
The Multiple Sclerosis Caregivers 2012 report found that respondents had been providing care for 9 years, compared to 5 years for the general caregiving population.
The length of caregiving, along with the unpredictable nature of the disease, are contributing factors to the physical, mental, and financial challenges that caregivers face.
Forty-three percent of respondents said that the mental confusion their loved ones experienced negatively impacted their own mental health, and 47 percent reported negative impacts on their own financial situation.
Eighty six percent of respondents needed financial help to pay for in-home care and keep their loved one out of a long-term care facility.
Koch said that she and her colleagues were not surprised by the statistics revealed in the report. But it did point out the needs that caregivers have for support.
“Because of their caregiving responsibilities, the ability to keep connected to outside world was severely impacted,” she said. “For one third of respondents to say that was a big issue was just like wow, we really do need to look at this and figure out how we can best assist people.”
Koch added that the report revealed that most caregivers feel committed to providing care in-home for the foreseeable future. The most common “triggering point” for a caregiver to make the decision to transfer their loved one to a long-term care facility is when they require 24 hour care.
How to Expect the Unexpected
“When anyone is diagnosed with anything, that day, you want to know what to expect,” Koch said. “What's going to happen tomorrow? What should I expect in terms of providing care? We want to tell people at that moment that it's not the end of the world, life goes on.”
Caregivers are not alone in navigating the disease, she said. Support groups and resources can provide much-needed help.
“The most important message is that you may have to reframe your idea of normal,” Koch said.