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A Caregiver’s Perspective: Am I Competent to Do This Job?

I earn a living by working in a hospital in the department of Human Resources.  Hospitals are heavily regulated and one of the most stringent agencies who monitor us is The Joint Commission. One of the standards they have for human resources is that it’s our responsibility to determine if the people we hire are competent enough to safely do their jobs. I won’t bore you with the details on how that’s done but in working on a project related to competency determination today, I thought about what competencies are required to be a family caregiver.  It’s not an easy job but for some reason insurance carriers and the government seems to believe that any family member should be able to be a caregiver.

Just before my father-in-law died last month, I was attempting to assist my mother-in-law in finding someone who could take care of him if he was discharged to hospice care.  We discovered that once a person is deemed not to be able to improve but instead just needs comfort care or maintenance care that Medicare and insurance companies no longer pay for help regardless of the health and well-being of the family member responsible for his care.  My mother-in-law is near 80 and has myasthenia gravis, a neurological condition that makes all her muscles very weak.  She cannot lift or move anything more than a few pounds in weight.  There was no way that she could provide care for her spouse; however, that factor was not considered by insurance and she was unable to get any type of financial assistance to bring someone in to care for him or to place him in a skilled care facility.  Why? Because insurance said he did not need skilled care; just palliative care.

I’ve found the same is true for someone who is totally disabled and cannot improve their health, like Lynn.  His MS has progressed to secondary progressive and he can do nothing physical for himself; not even scratch an itch. He is an author and writes manuscripts with the use of a verbal command program that writes what he dictates.  It’s slow going but it keeps him productive and fortunately, so far his memory has not been affected by the disease.  With Lynn needing total care and my needing to work full time to pay the bills, I looked for help that we could afford.  I now pay an individual to work six hours a day 2-3 days a week to assist him with typing, feed him, and make sure he has liquids to drink. I provide all the rest of his care.  Am I competent to truly care for him? What type of competencies do I need to keep him safe and healthy? If someone was to apply for my job, what would my job description as a care giver look like?

Caregiver Job Description

Experience or Education Required:  None required; you just need to be related to the person to whom you are providing care. However, experience in providing mental, physical, and emotional care to someone who has been disabled is preferable.

Physical Requirements:

  • Ability to lift 193 pounds independently using only a transfer belt
  • Ability to reach, push, pull, shift, and adjust 193 pounds into various positions
  • Ability to work 19-20 hours a day non-stop and adapt to being awakened at least once during the 5 hour sleep cycle to provide care for 15 minutes
  • Endless energy (may be supplemented by food and/or caffeine)
  • Ability to put self in second place in order to meet needs of the one being cared for
  • Emotional stamina required to not dwell on what’s been lost, face the fear of the future, to battle the loneliness of feeling alone in an occupied house, and the ability to help the one with MS cope with his own emotions and similar concerns
  • Ability to adapt to constant muscle aches, spasms, and/or muscle strains and to continue working even when ill

Competencies Required:

  • Ability to assess the physical, emotional, and mental status of the family member needing care
  • Ability to relay details of above when something’s not right to help the health care provider be able to determine what’s wrong with the family member’s health and what should be done
  • Ability to research medical symptoms, caregiver tips, medication administration, insurance documents, house and care maintenance, and a vast number of other things you have no idea about but must now do
  • Ability to problem solve and make decisions
  • Ability to provide emotional support and mental health care
  • Ability to manage money and other finances
  • Creativity
  • Perseverance
  • Loyalty
  • Self-sacrificing love
  • Ability to do all things, be all things, endure all things until your services are no longer needed or you physically can no longer provide them

Now, if that job description was posted in the paper, how many people would apply?  How much salary would be expected? How much prior training and experience would be required?  But, as a family member, you do the job with or without experience, with no pay, perhaps with no experience or training and you do it with the love of one family member for another.  There is no greater gift to give than to give your life for another—that’s your reward, the gift of giving love.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Joe
    5 years ago

    Thanks for writing the article. I recently became a caregiver after my wife had a major MS exacerbation last August and went from the hospital to a nursing home for supposed rehab. During her stay I had a wheelchair ramp put in and after finding out that she would need a standing lift to get from her power chair to the toilet, etc. I had a bedroom changed into an accessible bathroom so we could maneuver the lift for toiletries. Once the construction started the physical therapist at the home determined, after 16 days, that she was not responding to therapy so medicare and insurance coverage stopped paying for her rehab. Our home was now totally inaccessible and we had to self pay for three weeks until the construction was complete ($8000). I guess what I am trying to get across is that we also have to deal with sometimes callous, clueless people and systems. In order for my wife to getg a medicare covered power chair she had a face to face with her doctor before going into the hospital, then she had to have another face to face when she was in the nursing home but she could not get a power chair while she was in the nursing home. After she was released from the nursing home the face to face done at the nursing home was no good anymore so she had to get a third face to face. During this quest to get a power chair she also had to be evaluated twice to see if she needed a power chair. It had to be done twice since 30 days elaspsed from the first evaluation. We do not have an accessible van so all these trips require getting wheelchair transport and paying a lot of money for this transport. I brought up that all these transports are killing my wife and the folks requiring these office visits could have cared less.

  • Donna Steigleder moderator author
    5 years ago

    Our country’s support for people who are disabled who want to take care of their own families is terrible. There is no support in these situations; only a lot of red tape, paper work and frustration. We have been very fortunate in that our church has been remarkable in helping us make our home accessible. Several of the men from church have carpenter and plumbing skills and our neighbor is an electrician. I don’t know what I would have done without their assistance because we live in a remote area that does not have access to many resources. I was actually fortunate that we had not met the two year eligibility period for Medicare when he needed a chair so my work insurance covered it. Those first few years in trying to sit up an accessible environment in my home were filled with frustration and my credit card debt and loan payments are still a constant reminder of how expensive that process is. Best wishes on moving forward.

  • Cathy Chester moderator
    5 years ago

    Thank you for writing what must have been a difficult article to write, Donna. Being a caregiver is arduous at best, and what you outlined is exactly the “qualifications” that are in need. Tsk, tsk that in our country we are unable to use our system to help us get the help we need when we need it.

    My father had a stroke in 2000 so I know everything you’re talking about so I can sympathize. (Plus all of the people we know with MS and other diseases who suffer the same.)

    I wish there was a better way for you my mother and my siblings and you, Donna. Thank you for writing this very important article.

  • Donna Steigleder moderator author
    5 years ago

    Thanks Cathy. I hope one day insurance companies or medicare will recognize the importance of the family caregiver and give us some support.

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