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When It Comes to Home Care, One Size Does Not Fit All (Part 1): Multiple Sclerosis

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When Sylvie first came to the door, it seemed to take her a full minute to say "Hello." Jane, the home health aide who would care for her over the weekend, immediately knew why. Sylvie did not have hearing or cognition problems. She had multiple sclerosis (MS), a chronic, often disabling disease of the central nervous system. On this particular day, the disease had gotten the best of Sylvie's muscles, even those in her face, leaving her so fatigued and weak that she could barely speak.

"We train our aides to know that MS comes in phases," says my colleague Mark Andaya, Director of Education and Quality Assurance at Partners in Care. "There are exacerbations and remissions. Sometimes, when a person is very weak, even talking is an effort for them. Our aides are trained to recognize that this is a sign of the disease, and they treat it with patience and understanding."

Home health care is anything but a one-size-fits-all profession. As president of Partners in Care, a licensed, not-for-profit agency that provides in-home care, I find that Americans -- particularly New Yorkers -- are becoming increasingly empowered to ask for customized care. This can mean matching schedules, personalities, and even familiarity with certain cultures and customs.

It also translates into more frequent requests for home health aides with experience or training in caring for patients with special or specific care needs, which includes individuals with multiple sclerosis, HIV/AIDS, Parkinson's, Alzheimer's, diabetes, congestive heart failure, and those in hospice. So central is specialized care becoming to the story of home health aides today that I will be looking at it in a series of posts, beginning today with caring for people with multiple sclerosis.

A Toolbox Of Skills And Knowledge

A well-trained home health aide will recognize that any chronic or degenerative condition can bring on frustration and depression. MS has some exacerbating factors: it begins at a relatively early age, most often diagnosed in people ages 20 through 50; and its severity can vary significantly from day to day. Gwen, a Partners in Care aide who cared for a 44-year-old man with MS, recalls, "Oh, he would get so frustrated, so aggravated." MS had robbed him of his sight, and nothing that the doctors were doing seemed to be improving it.

Gwen, who has been an aide for 10 years, said she was careful to balance optimism and empathy. "I told him, I can't say I fully understand what you're going through, but try to remember that today is just a bad day. Tomorrow might be a little better. And look at it another way: the doctors are still trying. They must believe something's possible. He said to me, Gwen, you're making it better."

To deepen and diversify the skills and knowledge that aides like Gwen bring into the home, we continually assess and, if necessary, expand training and in-service education. Aides receive training on general topics -- such as body systems and related illnesses, transfers, infection control and code of conduct requirements -- as well as in disease-specific areas.

Recently, the National Multiple Sclerosis Society NYC-Southern New York Chapter selected Partners in Care as its sole provider of private, professional home care for people with MS -- and we are stepping up our training in this area. This includes education about signs and symptoms of the disease, its unpredictable nature, the need to encourage independence and intellectual stimulation, as well as nuts-and-bolts skills such as managing transfers, preventing falls and taking apart and putting together wheelchairs.

The Choreography Of Home Care

No matter the condition, aides and the people they care for develop a kind of choreography. Home health aides encourage independence when possible, step in to assist when needed, and provide consistent support throughout. This choreography is particularly intricate when caring for someone with MS, which can have exacerbations and remissions, dramatically affecting the level of independence from day to day.

A beautiful example of the home healthcare choreography comes in a compelling and vivid personal essay in a recent issue of the policy journal Health Affairs. Michael Ogg, who suffers from primary progressive multiple sclerosis (PPMS), describes living with a profoundly disabling disease, with two able home health aides who arrive in shifts, and with worries about the future as long-term health coverage is threatened in his home state of New Jersey.

He describes being stuck looking at the ceiling for hours when his wheelchair freezes coming out of tilt, and he chronicles more fruitful times with his two laudatory aides, such as preparing an adventurous meal of Thai food with Serge, one of the aides, acting as sous-chef. "My personal care assistants, who come morning and evening, day after day, allow me to live alone in my home," he writes. "They give me independence."

This is the almost-paradoxical truth at the center of home health care: While bringing in a home health aide can, at first blush, seem like an admission of dependence, its effects are actually quite the opposite, both for the person being cared for and for the family caregiver. It brings a measure of independence that would not be possible without such care.

When do you decide to bring in a professional caregiver to help with someone with MS? Here are some indicators that you or your loved one could greatly benefit from a home health aide:

  • It has become too difficult for a loved one to provide day-to-day care, due to a job or other family responsibilities.
  • The person with MS is becoming depressed because he or she feels like a burden to loved ones.
  • The family caregiver becomes increasingly impatient when supporting the person attempting to do tasks more independently.
  • Caring for a loved one begins affecting the family caregiver's health and well-being.
  • Getting to and from appointments becomes difficult with only one caregiver's assistance, as some transfers are a two-person job.

Should you experience one or more of these issues, you can contact a licensed home care agency to hire a nurse to come out and do an assessment or a home health aide to provide personal care, companionship or respite care.

Tips For Caregivers

About 400,000 Americans have been diagnosed with MS, with 200 people newly diagnosed each week. Worldwide, some 2.1 million people are thought to suffer from MS. Most people with MS live independently, often without professional care -- and a support system is vital. For those caring at home for someone with MS, we offer the following suggestions to keep your loved one safe, and as healthy and independent as possible:

  • If the person you're caring for is in a wheelchair, make sure that it is fitted properly.
  • Check for skin irritations; people with MS have loss of nerve fibers and are less likely to notice bedsores or major skin irritations.
  • Be mindful of heat. MS makes people very heat sensitive, which can bring on fatigue or affect the level of their strength.
  • Be careful not to speak to someone with MS as if they are hard of hearing or cognitively impaired. Fatigue can bring on speech impairment, but this has no affect on their ability to hear or understand.
  • Remember that MS often does not affect cognition. Reading books, learning a new language, watching movies and the like can help with intellectual stimulation.
  • MS moves in phases. Allow the person to do whatever he or she can, on any particular day. While simple tasks such as brushing one's teeth may take a long time, the feeling of accomplishment from completing a task independently can be a major motivator.

Above all, show patience and understanding. Realize that MS is an unpredictable disease and ability will vary day to day, so it is important to be able to adapt.

Do you live with a chronic condition, or do you care for someone who does? What is your number-one suggestion for providing -- or receiving -- customized care?

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