Ali Ingersoll, a C6 quadriplegic, says she has had some pretty phenomenal caregivers. However, she has also experienced some not so phenomenal ones. Ali talks about her journey with live-in caregivers, the good, the bad, and the ugly.
“After many conversations with fellow quadriplegics, we generally agree that for every 10 caregivers there may be 1 or 2 that are pretty phenomenal. Those are not great odds, but when you do find a great one, for God sake, don’t let them go!”
A spinal cord injury affects everyone differently. Therefore, everyone has their own unique ways of accomplishing everyday tasks. Because of this, Ali suggests not getting your hopes up looking for a caregiver who has extensive knowledge about SCI. She states, “You have to be willing to teach, be very patient, kind, and willing to adapt certain aspects of your life.” She continues by saying it can take a caregiver anywhere from several weeks to a month to learn your routine.
Ali works with live-in caregivers who are with her 24/7. She splits up their shifts where one caregiver works with her two a days a week while another one will work five days a week. “When you live in with someone it is a completely different ball game. There has to be a little bit more understanding than someone who just comes in for eight hours to take care of you because you have two personalities living in the household all the time. There is virtually no privacy and you have to find a way to live in harmony with them,” she says.
Ali says that a huge challenge for her with her caregivers is learning to not be taken advantage of because there has to be a bond created with someone who takes care of your intimate needs. While she does not want to generalize all caregivers, Ali says that are those out there that after a while start to take advantage of the person they are caring for.
“When you have someone who truly loves you like a parent, family member or friend who helps take care of you, there is a vested interest for them to really have your well-being at heart.”
Ali says it is important to trust your caregiver. However, she lives by the motto “Trust, but verify.” All too often, Ali says, individuals stay with mediocre caregivers because they are tired of going through the process of finding a new one. But, Ali reminds her readers that emotional abuse is the same as physical abuse.
She writes, “It is much easier to let a caregiver go if they do something physically wrong to you. But if they hold you emotionally hostage such as unloading their personal life on you, having 1 million emergencies where they don’t show up for work, etc. it can put you in a horrible spot.”
Check out Ali’s original post to read about some of her stories dealing with caregivers. She concludes her post by saying “There are always bad apples within each bunch. But what makes caregiving unique is that when you have several bad experiences.”
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