Multiple Sclerosis Caregivers

Vicki Health Guide
  • There are four kinds of people in this world: those who have been caregivers,
    those who currently are caregivers, those who will be caregivers,
    and those who will need caregivers. ~ Rosalynn Carter

    Many people with MS require help at least some of the time. Friends and family are usually the ones we want to turn to, but that is not always practical. Today I want to discuss relationships between MSers and their caregivers.

    I have some personal experience with caregivers, as many MSers do.

    There are two major categories: Professional Caregivers and Volunteers. Let's begin with the professionals.

    Professional Caregivers

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    Many people throughout history have chosen caring occupations. This includes many in the medical profession, beginning with doctors who recommend treatments. Then of course, nurses help the doctor, or they work for people who need the caring. There are also other jobs like occupational or physical therapists who may simply evaluate and recommend, or who may return over an extended period to help practice exercises.

    There are nurses who work in institutions such as nursing or retirement homes as well as assisted-living homes. They are responsible for many people at one time, sometimes helped by orderlies or certified nurses aids (CNA). This type of care works with a ratio of a few CNAs and even fewer nurses to many patients. The ratio depends on type of care, so there are fewer patients per nurse in ICUs or severe disability halls. It could be as few as four patients for each nurse and goes up to eight or even 13 for less severe cases.

    A CNA working in a nursing home is required to tend to all of their residents in a designated time period, and that leaves little time to develop any real relationships. If they work the same hall for a period of time, they may know who likes to talk about a particular subject while he or she performs her tasks. They do the same things each day. There is some comfort to the patient in seeing a familiar face and hearing
    a familiar voice.

    CNAs may prefer to freelance by adding extra work after their shift. Other people also find work totally outside the institution venue. This could be working full time, part time, or based on demand. This is particularly valuable for patients not in any type of public institution. These workers, regardless of medical training, can provide care regularly or as needed.

    These people have a schedule that may allow more intimate interaction.


    Although some people choose to make caregiving a profession, others become caregivers by coincidence when someone they love has a need. These coincidental volunteers become family caregivers, often at great self-sacrifice and expense to themselves. One in five Americans is an unpaid caregiver. If these 60 million family caregivers were paid just $10.10 an hour, that would be $375B, according to an AARP Public Policy Institute in a report called Valuing the Invaluable: The Economic Value of Family Caregiving. That is almost half the amount of the first Troubled Asset Relief Program (TARP) passed by Congress in 2008.

  • The stereotypical caregiver was at one time a daughter who gave up her life, refused to have a lover, and did not take vacations or have any fun because she had to take care of her ailing and aging mother. That is no longer the picture of the typical family caregiver.
    I am lucky enough to live with my partner, friend, sweetheart and caregiver who is a full-time family caregiver. Volunteer carers come in many varieties. Visitors who provide socializing, sons who drop by to do house repairs, friends who live far away and call to check in are all carers.

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    My caregiver and I were together before he was my caregiver. He remembers my diagnosis when I finally found an answer for my various symptoms. We did not have to begin from scratch with our relationship. I did not have to explain how my life was before. He knows my sadness when MS interferes with the life I was living.

    Family caregivers already have a relationship to begin with. Often, that relationship is strengthened during the caring period. People must love each other to make this kind of commitment to care for daily activities as basic as getting out of bed.

    The love deepens as the carer sees the frustration of the cared for who is now unable to care for herself. A continuum develops with compassion of the carer on one side and trust of the cared for on the other. Being thrown into the unfamiliar responsibility of caring for a loved one brings up the question of what exactly needs to be done. The carer and cared for have to work together
    to set goals, to decide what needs to be done, and how it should be done.

    My caregiver Garry wrote a post that includes tips from a CNA handbook Compassionate Caregiver. We find compassion is a big part of our relationship, and I think that goes both ways. We spend time just talking and ensuring our relationship is strong. This makes the job of caring easier. We like to play together and work together.

    Garry is concerned about what needs to be done, but more importantly how to do it. There is a lot of information on the Internet, including demonstrations on YouTube that are helpful. In addition, a worker, such as a CNA, can be hired for training.

    I am only one of the many people with disabilities on a fixed income and one of an estimated 34-52 million dependent on one or more caregivers. My concern is the sudden 24-hour responsibility of caring for a loved one with a chronic condition is a strain on the caregiver. As he cares for me, I want to ensure he takes care of himself. A couple of years ago, a former MSCentral member wrote a beautiful post on this very topic.

    It is difficult to be cared for, and it is just as hard to do the caring. I think the best caring situation depends on is all in the relationship.

    Notes and Links:

    The Value of Caring

    It's All About the Caregiver
    National Family Caregivers Association

Published On: June 18, 2010