Trying to find people to help with my sons has been an ongoing challenge. When my sons were babies I thought it would be fairly easy to find someone to care for them while I was teaching classes or running errands. Most babysitters could lift my tiny guys and changing diapers is a norm for an infant or two-year-old. However, that belief proved false when parents of teenage babysitters learned that my son Derek might stop breathing (you can read more about this story in my book).
When my sons became preschool age, finding helpers became somewhat easier, if I recall correctly. However, I wasn’t leaving my sons in the care of others; I needed someone to help push a wheelchair or feed them while I was close by feeding another son. These helpers weren’t actually responsible for the guys’ physical/personal care.
When my sons became teenagers I recall having two people who could be trusted to care for my sons. One man was able to lift, bathe, and feed one group while one lady helped with the more medically fragile sons. Today, these two people are not available.
Currently I am searching for care providers who are approved by the county agencies and this has become a circus, so to speak. Our home is in a rather rural area that is not densely populated by such caregivers. Not only are there few available but most are older who may have many years of experience with providing care to the elderly or stroke victims. Of course my sons are adults but not elderly or stroke victims and their care is different.
The first requirement for being a care provider in our home is to single-handedly be able to lift a minimum of 90 pounds. After that, being able to help my sons who have cerebral palsy with their personal care: toileting, dressing, and feeding. Minimal help with laundry and light housecleaning of their rooms is appreciated.
I will share a few stories of what we have experienced within the past couple of years.
The referral agency sends me a list of potential providers. I ask Kyle to help make the initial phone contact since he has clear speech and excellent phone skills. He leaves a message and waits for a call back as most people don’t answer their phones on the initial call. I’d say close to 95% either do not return calls or speak little of the common language in our home.
And here are a few stories about those who did return calls.
Steve arrives on time to meet with me and be introduced to my sons. He is well dressed and several years younger than me.
“Steve, how many pounds are you able to lift?” I ask.
“I’d say about 50 pounds,” he replies. After a few more questions about days and hours he might be available we realize they don’t line up with the days and times we need help. I politely usher him to the door.
Roberta arrives for an interview. She is rattled because she has to drive on the freeway to arrive at our home. This just won’t work for her. She has decided before I can even ask any questions.
One man returned a call but he is only available at night while everyone is sleeping. “No thank you, sir.”
Last week I interviewed two people. First was Susan. Susan showed up without confirming a day and time she planned to come by. Fortunately I was home and so were my sons. I went to the door to meet her. I invited her inside and she walked very wobbly up the ramp and back to one son’s room. I introduced her to Alan, she was leaning on his dresser, weaving back and forth and dropped her keys. She was sleeping while she was standing up. I tried to figure out what was going on with her and tried to keep a conversation going.
“Do you think you can actually lift Alan? He weighs about 90 pounds,” I asked.
She briefly opened her eyes and answered, “I’m sure I can. I’m pretty strong.”
Throughout this Alan was sitting beside me with an expression of fear and constantly looking at NO on his wheelchair tray. I reassured him this lady was not going to be working here as I ushered her out of his room.
Before she actually got out the front door, she dropped her keys a couple more times, lost one of her shoes that she couldn’t get back on. And she stopped midway down the ramp, leaned against the wall and slept standing in her tracks.
I had no idea what to think of this. Others in the house were starting to panic as well. She finally left the house and went to her car. As I shut the door and walked back inside, I emailed the agency to inform them of what had just happened. I was assured Susan would be removed from the list immediately until a supervisor could look into it. I did not want any other clients to have to deal with this.
About five minutes later I realized her car was still parked behind my van and she was asleep in the drivers seat. I once again contacted the agency and that person offered to call her and ask her to move. She called twice but Susan never answered her phone. Sergei came home from work and barged through the door, “Is that woman in that car out there dead?” he shouted. Kyle had plans to use the van but she was parked behind it. He finally got her to wake up and asked her to move but she immediately fell back to sleep. Then the idea of pressing the PANIC alarm crossed his mind. I was not there to witness this but he said she jumped out of her seat and started her car. However, she only moved it a little and there still wasn’t room to get our van out of the driveway.
Finally, I went out and rapped on her window and got her attention. “Susan, do you have a medical emergency?” I asked.
“Who me? No, I don’t have a medical emergency. Why do you ask?” she replied.
“We are concerned because you cannot stay awake,” I said.
“Oh, I worked all night and I am just tired. Do I need to move my car?”
By this time I was honestly concerned about other people on the road as she pulled out of the driveway. Even if she had worked all night, it was now 4:30 in the afternoon and she would have had several hours to sleep after her nighttime shift. Once again, I emailed the agency and informed them that she had left the property. For some time after she left, this was the talk of the house. I have never seen my sons so shocked as they were that day.
Cheryl arrived two days later to meet my sons and discuss how she might be able to help. After the interview with Susan, Cheryl looked like a queen. She was more tuned in to the conversation and appeared to be knowledgeable about more things but, like many others, couldn’t lift more than 50 pounds. We both agreed to think about it and I would contact her once I talked with Ben and Alan. We finally decided to give her a try even if I still had to do all the lifting.
Her first day on-the-job training was to help feed Alan and Ben. Oh boy, she had never fed anyone like Alan! Sure enough I had been under the impression she had experience with this. She also said she knew how to tube feed but when it came time to feeding Ben, she had never seen the newer MIC-KEY* buttons. I had to sigh, take a deep breath and hold my tongue. She also had never used NO RINSE shampoo, which is what I have been using with Alan. I questioned myself if it was the right decision to have her come and help.
Her second time here, I also spent most of the time showing her what to do. I still had to prepare Alan’s food and medications but I left her alone with Alan to actually feed him. I explained that she could wash his hair again (alone) while I fixed dinner. I suggested she give him a sponge bath before she left. Or course I had to lift him out of his wheelchair, show her how to get his shirt off, gather up supplies for her to do the job, etc. Then I needed to show her how to put a shirt on and the story continues. The up side of the story is she was trying.
Parents – do you have any “Susan” stories to share? It wasn’t funny at the time but it sort of is now. One thing positive gained from that interview – my sons have more respect for the decision I made on their behalf.