A few weeks ago, Nancy Grace did a show on how those with disabilities are facing excessive amounts of abuse by their caregivers. As someone who is in a wheelchair, and who has been abused by caregivers, I can attest to this. Abuse can be physical, mental, and emotional. It can often encompass neglect. However, for whatever reason, a person will stay in the abusive situation because they cannot get out of it or they have no other choice.

I faced abuse during my first year of college. I had a bad home life, and ended up going away to school where I had two caregivers. The caregivers were very negative, especially when it came to helping me transfer to go to the bathroom. At some point, they would make snarky comments about such a natural act. They would complain they had to help me go to the bathroom.

It eventually became so bad I started holding it, only going 1 to 2 times per day if that, and avoiding having bowel movements as not to be denigrated for it. This was most certainly NOT healthy. It was harming my body and hurting my soul. However, I endured the abuse, unable to get out of the situation. My fear was that I would have to return home, to a worse situation. So, I put up with it, unable to get new caregivers at the time.

When I finally got rid of these caregivers, my new caregiver decided to quit without telling me. She showed up in the morning to drop my keys off in my dorm mailbox, and wouldn’t answer any phone calls. I ended up being stuck in bed until 3 PM when someone could finally come and help me. Needless to say, I ended up transferring to a better college with a more efficient caregiving system.

I have many friends who have been abused by their caregivers in various ways throughout the years. One of my closest friends was the victim of rape by her caregiver. He tried to pass it off as “helping her”. She was so ashamed, and afraid of losing care that she didn’t tell anyone until he was no longer caring for her. Not that I’d call it caring. I know other caregiver stories that involve caregivers not showing up and leaving the person with a disability in bed for hours with no food, no ability to go to the bathroom, and nothing to pass the time (besides my own). I also know caregivers who have hit or verbally abused those they were caring for, which is the most straightforward form of abuse.

Sadly, the vast majority of caregivers are family members. Mothers and fathers abuse their children (adult or not) with disabilities just because they have to take care of them. Sure caregiving is hard work. It’s frustrating, selfless, and it receives minimal rewards and benefits. However, these individuals are not putting themselves in the shoes of those with disabilities. In truth, most if not ALL of us WISH we could take care of ourselves. We don’t choose to be the way we are. We aren’t being lazy. We truly need help, and even if we don’t say it all the time, it is gratefully appreciated.

Some of the frustration comes from a lack of funding for caregiving. Most caregivers cannot hold other jobs, yet they make less money then they can afford to live on. Caregiving is the equivalent of two to three full time jobs. Some caregivers never go off the clock. Many have to expect the unexpected. While it is an incredibly stressful and high anxiety job, it isn’t right to take that frustration out on the person receiving the care. Instead, that anger and energy should be focused on improving the benefits for caregivers.

Ideally, the government needs to step up and develop a plan. If there were more community based health services, caregivers wouldn’t need to be abusive. Things that could truly help caregivers out include:

Increasing Pay – Caregivers can be paid less than minimum wage thanks to a ruling by the Supreme Court. They also can be denied payment for working overtime. This is the only profession that can be denied basic job protections.

Community Based Support Systems – Having qualified, trained individuals in the community coming in 2-4 times a week would be beneficial. To do so without the caregiver getting docked on the meager amount of pay they make when community based support systems come in would also be beneficial. Right now, caregivers lose money when others come in to help.

Equipment & Technology Purchases – Many caregivers must care for the disabled in unconventional ways, some of which may be dangerous. Insurance needs to start paying for more equipment purchases to help caregivers lift patients more safely and do other things easier to make their job less intensive.

Yearly Vacations – Caregivers NEVER get vacations. Even if they go on vacation with the person they care for, they still have to work the entire time. Caregivers should get at least two weeks off a year to rejuvenate. Qualified care by a fill in worker should be provided during this time. Since many work 24/7, 365 days out of the year, this is a much needed benefit. Otherwise, caregivers will continue to get burnt out.

Caregiving doesn’t have to be a chore. It doesn’t have to be difficult. It doesn’t have to be abusive. With some support from family and friends, some changes in the system set up by the government, and encouragement by those who are able bodied, through petitions and activism to get these benefits, caregiving could become what it deserves to be…a way to help those with disabilities live more independent lives.

Technorati Tags: disability, abuse, caregiving, caregivers, government, pay, improvements

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