Treatment breakthroughs that slow the progression of MS may also, in the future, limit the number of full-time personal care attendants needed for MS patients. Nonetheless, the MS caregiver role remains a critical one--usually filled by a family member or friend.
While most of our loved ones fulfill this duty readily and selflessly, it is a role that can be fraught with feelings of frustration and isolation. The emotional, physical, and financial support that MS patients require during periods of intermittent relapse or progressive illness can be an overwhelming, 24/7 proposition for the caregiver. While people with MS are eternally grateful for the nurturing support of our care partners, their contributions are often taken for granted in society's eyes.
According to data from a July 2000 survey, the National Family Caregivers Association (NFCA) found the following trends
- More than one-quarter (26.6%) of the sampled population is currently caring for a family member or friend, or has been within the past year.
- The number of men participating in care is 44%.
- The number of caregivers living in the same household as the one they care for is 37%.
- 52% of respondents interviewed said they provide help with physical care such as dressing, transferring or toileting that are typically referred to as the basic activities of daily living (ADL's).
- 46% of caregivers in this sample perform some type of nursing care such as giving medications or monitoring vital signs
- Among caregiver respondents, 43% report an income of less than $30,000
November, 2001 is National Family Caregivers Month. The theme "Share the Caring" is an acknowledgement that caregiving is more than a one-person job. It's a request for assistance. It's a call to action to help America's family caregivers. NFC Month is a time to honor, thank, support, assist, educate, and celebrate our nation's more than 54 million people that provide some level of care to loved ones last year.
As part of this monthly event, NFCA is gathering Caregiver Stories to create a national story packet to send to members of Congress and the Bush Administration.
My own personal "hero" is my husband, partner, and caregiver, Vincent. He is adding his voice to this initiative by sharing his story as a caregiver.
Vincent's Story
My name is Vincent, and I just turned a scary 39 this past September. My wife Pamela (age 40) and I have been together for almost three years now, two of which have been spent in a marriage I can only describe as blissful, sometimes beyond words to express it. Pamela is my whole world, she is my soul mate, she is my best friend, my companion, the other half of me. She keeps me grounded, she is the reason I sometimes feel I was born. And oh, did I mention that she has relapsing remitting Multiple Sclerosis (MS)?
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