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Caregiving from All Sides by Rosemary Musachio
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Until 7 years ago, my then 80-year-old mother provided for my personal care needs for most of my life, except when friends accompanied me on trips.  She bathed, dressed, groomed, and fed me.  Additionally, she did all of the household chores.

Mom thought she could do this forever until health issues appeared and she was forced to realize we needed assistance.  Adjusting to someone else providing physical care for me was difficult for her.  Her strong Italian character didn’t make the adjustment easier.  She dedicated 46 years of her life to caring for me.  At first, she felt like she was being replaced.  Now she panics if a caregiver doesn’t show up.

I also didn’t feel very comfortable with strangers washing me up and helping me in the bathroom.  I still feel humiliated when a new caregiver does these things.  Can you do your “business” while another person looks at you while she asks, “Are you finished?” every minute.  No, my body isn’t on a timer.  Thankfully, some caregivers understand this.  They occupy themselves on their phones while I complete Nature’s calls.

Yet, the humiliation is nothing compared to unskilled or no-show caregivers.  An example of an unskilled caregiver is one who doesn’t know how to give a sponge bath or other basic hygiene tasks.  One time an aide sat me on the toilet without pulling down my pants.  Guess they were invisible to her.  Aides also haven’t washed my face or my private parts.  How presumptuous of me to think they’d know the basic personal needs of human beings.  I have written personal care instructions to explain exactly how I need my daily care met.  While the instructions have helped many aides, some don’t follow them.  So I have to reiterate by typing to them when they put me at my computer—that is, if they know how to set me up.

Rosemary with her Caregiver and Friends

When caregivers don’t show up, it can be very stressful to frightful.  If my mother wasn’t around, I would be stuck in bed hungry and defecating on myself until someone came.  Even with my mother, the situation becomes frustrating if no aide comes.  Since she can’t lift me, we have to call a neighbor (a godsend) to help.  Although home aide agencies are supposed to provide backups, sometimes none are available.

Caregivers, especially for persons with developmental and neurological disabilities, have to have three main qualifications.  First, they have to care more about a client than a paycheck.  For instance, if you go to the breakfast table with matching clothes and hair combed nicely, then the health aide puts her heart into it.  If she has you looking like a clown, however, she’s just there for the money.  When a caregiver truly shows interest in clients’ well-being, she does things beyond what she is required to do.  She may notice a dirty wheelchair cushion and wash it, or she may organize a client’s dresser items.  Some of my caregivers have bought me items I needed out of their money.  LaMondre’ Plough, one of my colleagues who also needs caregiving services, recalls when he was stranded in downtown Atlanta without accessible transportation.   His caregiver encouraged him to remain calm while hiking with him until they found lodging.

The second quality of a good caregiver is skill.  One training class and a certificate doesn’t make someone skilled.  Unfortunately, some agencies hire aids with just those factors, no other qualifications except helping a grandparent perhaps.  Just like other health professionals, home health aides should be interns where they could get hands-on experience by shadowing seasoned colleagues.  Seeing how something is done instead of hearing or reading it makes a difference. 

The third criterion for good caregiving is openness.  LaMondre says caregivers must engage in honest, open communications with the clients.  “I set out what my needs are and the expectations of fulfilling those needs at the onset of the relationship. And I constantly evaluate to make certain that my needs are being met in a fashion that is acceptable for me.  This relationship can be very complex.”

When I began having home health aides, I was hesitant to ask them to do something or tell them something wasn’t done right; I feared they would be mad or not return.  Consequently, I ended up being in discomfort or dissatisfied.  So I forced myself to express my needs and do it respectfully, always saying “please” and “thank you”.  Aides also must be open in saying if they can’t do something, such as shaving you.  Then you can ask another caregiver to do it.

When clients and their home health aides become so comfortable with each other, friendships can develop.  When you see a caregiver everyday, you are bound to confide by sharing emotions and thoughts.  Some of my caregivers know more about me than my mother does.  Some make me laugh and encourage me when my spirit falls.  Even if one caregiver went to pursue other paths, we’ve remained good friends.  My current caregiver even considers me family and comes when I need her, even if it’s not during her shift.

Rosemary with her Caregiver Sawaname

While both the caregiver and the client must be comfortable with each other, they can’t overstep bounds.  For instance, LaMondre had a caregiver who brought her child and boyfriend.  Although he didn’t mind, her boyfriend drank LaMondre’s pop.  Conversely, clients shouldn’t take advantage of them.  I have been guilty of this when I didn’t tell my caregiver I was coming home late from being with friends.

Home health agencies also shouldn’t take advantage of aides.  According to Payscale.com, the average hourly salary of an aide is $10.81.  Many agencies don’t offer them paid holidays or health benefits.  If clients are to be treated with the best possible care, then caregivers also should be treated with the best possible incentives.

Rosemary Mussachio

Rosemary Musachio

CHIEF ACCESSIBILITY OFFICER 

Warrensville Hts., OH.  Rosemary Musachio is a frequent blogger and currently the Chief Accessibility Officer for Ruh Global Communications. Rosemary is available to offer corporate training and webinars on accessibility and awareness. She’s also certified as a CPACC. Rosemary, who was born with Cerebral Palsy, has many years of experience as a writer & poet, accessibility tester, auditor, trainer, and technologist. Besides E&IT Accessibility, she also advocates attitudinal accessibility, especially concerning women with disabilities and non-verbal patients.

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