The Heartbreaking Truth to Respite Care

Sometimes it’s the clients who need a break from their family

I have only been working in respite care for a little over two years now with a few regulars. Some of the people I care for, however, are sweet human beings whom I will seldom see more than a few times a month.

I care for children, teenagers, and adults. When I show up at the assigned family’s house, the legal guardian tends to get a look of relief on their face, anxious to get their child or sibling out of their house. For a moment we share a look — theirs being the side-eye two people exchange when someone has just done something really embarrassing, mine as friendly as possible, trying not to waver from the heartbreak I know I will soon witness.

The parent or guardian typically cracks a joke aimed at their loved one, and will usually stay in the house but will remain “unavailable” until my shift is over. One client that I see a few times a month, an older woman with FAS, will never forget to remind her sister and nephew that she loves them very much whenever they happen to pass by.

Only for the two to brush past her and say, “Yeah, see you later.”

There was one point where nobody was home and my client started crying, but would not tell me why. I texted her sister to ask if she may have an idea what the problem was and if I could do anything that would make her happy. She called me and asked to speak to her sister; due to COVID, I did not want any clients handling my personal cell phone, so I had it on speaker.

As soon as my client started to explain that she left her water bottle at her day center, her sister started screaming at her, scolding her that if she kept up her “stupid behavior,” nobody would ever want to be around her again. The woman tried to assure her that she would behave, and even squeaked out an, “I miss you.” The sister’s response absolutely shattered me:

“Yeah, well I don’t miss you. You’re pissing me off and frankly, I don’t even want to come home tonight. Stop crying and eat your damn dinner.”

She then asked to speak to me again and resumed her customer service voice to tell me that I shouldn’t have to worry about her “bothering” me again.

Sadly, this is only one of many scenes that I’ve seen unravel through various clients I’ve cared for. These people are family members, but they are seen as burdens.

I’ve witnessed mothers leaving their child with me to take the rest of the family out to dinner, to festivals, and family events. Meanwhile I’m left with the responsibility of trying to act like we are having just as much fun, though I’m sure we both know the truth.

One teenager in particular was left with me as his own mother was getting married. His other siblings had strutted down the stairs, showing off their fancy dresses and suits. Even the housekeeper was invited. We spent the day in the house as if it were a regular Monday afternoon.

I understand that living with and caring for someone with a disability is not easy, and doing it for years can eat at someone’s mental health. Not everyone can handle it and there is no shame in admitting that you need help keeping your patience.

But people with disabilities are not disposable. They are our friends, peers, and family members. They are some of the kindest souls you will meet and, being around them all day and night is never and excuse to make them feel unloved.

Respite care workers are here for a reason, which is to temporarily relieve you from caring for — even thinking about — that person. In that time, you can do whatever you need or want to do. Live your life, relax, and don’t stress about needing to care for another human being.

Yet why, even though people like me are hired to relieve caregiving duties, do you still feel the need to circle back around to do further damage? Stop dreading the few hours left in the day you will need to see your loved one and enjoy the time off that you have.

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