This topic has been on my mind a lot this week. I’m finding that when it comes to finding someone to care for my son I have some serious trust issues. And rightly so, after what happened to us two weeks ago.
Then there is that horrible story in the news about the caregiver who allegedly murdered her medically fragile grandson. So yeah, I’ve been a bit of a basket case lately. Both incidents have made me consider whether or not I want to continue with the nursing care or just go it alone.
Sometimes having nursing care in our home is just as stressful as not having them. On the one hand I NEED them to have any sort of independence and at the same time with them around its like not having any independence at all. You would have to live it to understand what I mean, it’s a Catch-22 situation.
As it is, it’s difficult to leave my son with “just anyone” because his tracheostomy and g-tube care require training. But what happens when the person trained cannot be trusted? I would like to believe that because someone is licensed, trained and “seems” like a good fit that they can be trusted with my child’s life. I would like to believe that the nursing agency has hired and screened candidates thoroughly.
Last week I found out the hard way that that is just not always true.
I used to think my short list of requirements in a caregiver was pretty simple and straightforward: experienced, trained, dedicated, good with kids, on time, flexible and overall good “vibe”. It never crossed my mind that I needed to add HONEST to that list. I, naively, thought that was implied.
Don’t get me wrong, we currently have three dedicated nurses on his case that I do trust. But after the past week…I am wondering how confident I should be in MY ability to find trustworthy caregivers. I’ve been using my mom gut so far, and maybe that is what helped me last week. But I could have easily put my trust in the wrong person.
That is a scary thought.
Who do you trust your children with?
Janis chronicles Austin’s life and medical journey at Sneak Peek At Me. She is an advocate for medically fragile children and families living with a rare disease diagnosis.
photo/photoxpress
I only trust family. I have one sitter who has been with him since birth. Her daughter is one of my closest friends. She has her own daycare so I use her as my Respite and when I have errands and appointments for others in the family.
We cannot trust family to take care of our son – the family in the area has actively avoiding learning how to care for any trach related things.
We currently have 2 daytime nurses, one of whom we love, and one of whom we tolerate (largely for personality issues – she has reported night shift nurses for incomplete notes, and has a reputation for being a tough cookie, but so far she seems competent and trustworthy).
We have one very close family friend who has learned all of his care, and has babysat on more than one occasion, for 2-3 hours at a time.
I know exactly what you mean. Skyler needs meds too, and if he were to get sick the person watching him needs to know what meds to give him, how much, how to do the injection properly, etc etc. While we don’t have a nurse we have trained respite care, a person who we chose thankfully. But I find I have a hard time leaving him with anyone, even people who I think I can trust. It’s not just that I’m worried about them being dishonest (although I do worry about that too) I also worry about them making mistakes or not remembering the right thing to do, etc. What if something happens?? Agh it’s just harder when your child has special needs to trust anyone to take care of them.
I only trust family as well. and I cannot be convinced otherwise at this stage of my son’s life. It may change when he is older, who knows?
When Amanda was younger there were three sisters who would actually fight over who would get to take care of her. They were wonderful. They would even keep Amanda over night and one time kept her for three days. But, because they they were so great and amazing they are all married now with small children of their own.
Then we found two high school girls who adore Amanda. One has been with us now for seven years. But the past couple of years she herself had some health issues and then got married and has a child. The other friend is quite good as well but now is a kindergarten teacher.
We have one more girl who is very good, but not available very often because of college and the Air Force reserve. But we make do.
My family is unreliable at best.