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The Disturbing Trend of Caregiver Abuse in the MS Community

The Disturbing Trend of Caregiver Abuse in the MS Community
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This is disturbing and, unfortunately, not surprising.

More than 50% of people with advanced multiple sclerosis reported they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey published last September by researchers at the University of California, Riverside.

Much of that mistreatment (44.2%) was described as psychological, often involving being insulted or sworn at in anger. This doesn’t surprise me, because I often read about such situations on social media, in which the person with MS is complaining about a spouse or a parent.

Financial misconduct was the second most common type of abuse, reported by 25.2% of those polled. This involves the caregiver taking cash or items without permission. Neglect, usually something like refusing a request for help, was reported by 16.5%. A little over 11% reported physical abuse, and just over 8% reported sexual abuse.

Many things add to the risk of abuse

“We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is,” Dr. Elizabeth Morrison-Banks, who led the study, told UC Riverside News.

According to Morrison-Banks, family members are often forced to help a person with advanced MS when they can’t afford a paid caregiver. But those family caregivers may also be working full-time or caring for children. They may even have health issues of their own. “All of these challenges can increase risk of mistreatment,” Morrison-Banks said.

The telephone survey of 206 adults found that the risk of mistreatment increased when a family member served as the primary caregiver day after day, with no breaks. A poor relationship with the caregiver prior to the onset of MS nearly tripled the abuse risk. Other risk factors included the person with MS having significant cognitive impairment or fatigue, or either the caregiver or the person with MS using alcohol.

“Being a full-time family caregiver for someone with substantial neurological disability often presents significant challenges,” Morrison-Banks said. “Many families take these challenges in stride, but others end up in situations of abuse and/or neglect.”

Are there solutions?

Morrison-Banks and her team don’t suggest any, they only raise a warning flag for healthcare professionals to be on the alert. “Health care professionals should maintain a high index of suspicion. We can’t assume that all people with advanced MS are living in safe situations, even if they don’t bring up their concerns on their own,” she said.

But as people with MS, we also need to be our own advocates as much as possible. The National Multiple Sclerosis Society cautions that people with MS “may not want to risk upsetting the people who are providing them with care and assistance.” But we must.

It seems that social media groups are where people with MS often reach out for help with abuse because their family caregiver doesn’t understand, doesn’t listen, or just flat-out doesn’t care. They find solace there, but not usually any real solutions.

Have you been in this situation? Do you have any suggestions? Please share in the comments below or at our Multiple Sclerosis News Today Forums. You’re also invited to visit my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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10 comments

    • Ed Tobias says:

      Hi Marie,

      I’m sorry to hear of your pending divorce. Unfortunately, as my column reports, you’re not alone. I hope you’re able to quickly move on and live a better life.

      Ed

  1. So I was mistreated by my X. With about 400,000 of my money going to him. I would like to go after him and toss his ass in jail. To think I MIGHT NOT EVEN BE SICK or not as bad as I am. It kills me to see him and his new wife are out there getting a new home built, having a new motorcycle each and here I am living with my father going in and out of the hospital because of M.S. EXASPERATIONS.

    • Ed Tobias says:

      Dear Linda,

      What can I say other than to say you’re not alone. Others with MS understand what has happened to you. It’s one of the non-medical effects of MS. Some people only think of themselves and I wish there was an easy solution to that problem.

      Ed

  2. D says:

    I was physically and emotionally abused by my ex husband and my older son. I have a lot I’d like to share about this subject. I finally got out, but my son is still emotionally abusive to me and plays on my guilt of leaving to get money out of me. He beat me with a leather belt with a metal buckle while his father stood there and almost encouraged it. This was just one of of many violent assaults. My younger son who was under the age of 8 was left trying to protect me and now has PTSD from what he saw.I was also wiped out financially and the trauma seems like it’ll never go away. I hope a professional reaches out to me because I am a prime example on how the system fails the disabled. They even ganged up and had me committed due to the failure of CPS, but later, a judge cleared me 100% and now years later I just learned that the involuntary commitment will be on my record for the rest of my life, so now I have to hire another attorney to get this removed. I had an order of protection against my ex husband that the CPS worker didn’t even question! Every rule was broken and the CPS judge went off on himself but that still didn’t save me, I had to save myself by running away with my younger son to a high school friends home, As you know that’s more of an expense for me that I can’t afford because I’m disabled. Please someone contact me, there were so many times that an informed doctor, judge, lawyer or so many others could have helped if they put the pieces together. The system failed me in more ways than I’ve even mentioned here. I want to give my input so maybe, just maybe I can save someone else.

    • Ed Tobias says:

      Dear D,

      I’m so sorry to hear about all of the problems you’ve had. You must be a very strong woman to have been able to deal with all of that. Have you tried contacting the MS Society in your area? They may be able to suggest a professional who can help you.

      Ed

  3. Mia says:

    This is such an unfortunate reality for people living with MS. My mom has MS and our family had learned over the years that it is not a one person deal to help take care of her. In order for there to be less frustrations, the whole family needs to be able to help. Whether that is helping with simple tasks or complicated ones it really does take a group of people to help overcome the complications that come with having MS.

    If anyone has suggestions of home nurses or services that help relieve some of the daily duties of a care taker, please let us know.

    • Ed Tobias says:

      Hi Mia,

      Having a supportive family makes such a difference, but it can also take quite a toll. You might give a call to the MS Society’s chapter where you’re located to see if they have any suggestions. Also, have you asked your mom’s neurologist?

      Ed

  4. Penny-Marie Wright says:

    I haven’t had any of the problems or trouble that others write about here but I did Friendly Visiting for a lady through the local Society here for 15 years or so. She ended up spending about 10 or more years in a local hospital & the supervisor on her floor mentally abused her & her mother. The nurses were not allowed to do anything more than very limited stuff for her & not to talk to her mother about anything or tell her anything. The lady herself couldn’t talk so couldn’t say anything. Someone like that shouldn’t be working in a hospital & especially in a supervisor position.

    • Ed Tobias says:

      Penny-Marie,

      That’s horrible. You’re right, those are not the kind of people who should be health care professionals.

      Good for you that you did Friendly Visiting. The world needs more people like you. You make a difference.

      Ed

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