Multiple sclerosis is a progressive disease that affects every individual uniquely, and therefore carries just as unique caregiving responsibilities for their loved ones.
Certainly people newly diagnosed with M.S. or who are in remission have very light needs of caregivers, whether those people are a spouse, adult children, or other family or friends. But if the disease is advanced, the caregiving load can be full-time.
Multiple sclerosis is a chronic and often disabling disease that affects the body's central nervous system.
The National Multiple Sclerosis Society has a free downloadable guide for caregivers that provides tips on how to care for themselves, how to manage severe physical symptoms, hiring professional home care and more.
The reality is that caring for someone with M.S. is going to be very different than caring for a loved one with any other progressive illness. "Here we take care of people who have both M.S. and other neurological disorders," said Chris Dunbar, a social worker with the Rocky Mountain MS Center, who works at the King Adult Day Center in Denver, Col. Mr. Dunbar explained that M.S. lesions affect the brain in different ways -- there might be a person who is barely mobile speaking in whispers who is still very mentally sharp, sitting across from someone who appears physically able but no longer has good judgment or who has other mental and emotional problems. "It can create quite a challenge to the caregiver, and it will change over time," he said.
Doug Hawk is still able to care for his wife in their Denver home, but he knows that his caregiving responsibilities will expand as her M.S. progresses. "The fatigue factor is amazing," he said. "I do a lot of stuff around the house -- I clean the house, I do all the shopping, all the chores."
His wife Jean noticed her first symptoms in 1998 when her arm consistently hurt, and then one day she simply fell down for no reason. She was diagnosed with M.S. in 1999, and after experiencing some vision problems she decided to let her driver's license lapse. At one point, she needed her husband's help injecting her medication daily and nurses trained him how to give his wife injections.
"I think the most important thing is patience," Mr. Hawk said. "You can get overwhelmed. If she needs something, I do it immediately. Just do what you have to do and don't get upset about it. Take it one step at a time."
That same wisdom goes for altering life plans together. "It took us both about a year to come to grips with it after she was diagnosed," he said. "We had thought when we both retired we would take a lot of car trips together. But now we don't do anything. She is exhausted by the time she gets dressed."
Akrista L'Bert of Ohio, blogs with her husband Cir, about his multiple sclerosis and her role as his caregiver at "Life in Spite of M.S." Mr. L'Bert was diagnosed with M.S. almost 20 years ago, but had to quit working 12 years ago when his symptoms interfered with his work as a salesman.
"Learn as much as you can about M.S. because it is so unpredictable," said Mrs. L'Bert. "Know as much as you can about it to be able to help."
For now Mr. L'Bert is able to walk with some assistance or uses an electric wheelchair to get around. "I help him get dressed so he won't get too tired out," Mrs. L'Bert said. "If we want to go somewhere, it will totally tire him out if he has get his lotion and his own clothes."
Like Mr. Hawk, Mrs. L'Bert said that patience is the key when being a caregiver for someone with MS because the symptoms are not always apparent. "It's like an invisible kind of thing," she said. "Like the fatigue -- you can't really see that."
Mr. Dunbar agreed that the "invisible" symptoms can exacerbate the caregiving role. "It's really almost impossible to empathize with that person," he said.
Mrs. L'Bert said that an aide comes three times a week to help her husband with bathing and also to help with the housekeeping. She said that insurance caps have limited Mr. L'Bert's access to physical therapy.
Mr. Dunbar said that caregivers need to be aware of their own limits. "Caregiver burnout is a real issue," he said. "There is anger, sadness, the loss of hope for the future, and these are normal feelings, but when it gets to the point of risking the safety of their loved one or the caregiver's health, then they need to reach out for support."
"Comprehensive personal care plans are customized to individual needs and may include: personal grooming assistance, housekeeping, errands, transportation services, help with medication reminders and nutritional needs, or assistance with the use of new ambulation or transfer devices," says Jennifer Tucker, vice-president of sales and marketing at Homewatch CareGivers.
If you are feeling burnout, encouragement and support from Homewatch CareGivers can provide you and your family some relief as you face each of the unique challenges that characterize the advancing stages of multiple sclerosis. Companies like Homewatch CareGivers can provide a personal care plan unique to your needs.
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CORRECTION: A previous version of this post incorrectly identified Akrista and Cir as the L'Bergs. Their last name is L'Bert.