Those who require daily assistance, like me, can understand how anxious I felt when my trusted and devoted aide, Laurie, took a much-needed vacation with her family.
Well, what was I going to do? Panic? That would’ve been great, but didn’t solve the problem at hand. I needed to find someone who could step in, take care of me, get me to appointments, help me prepare meals, and yip at my kids if they need it (and they do). I’m embarrassed at how self-absorbed that “little me” moment sounds, but it is scary to have strangers taking care of the most private aspects of your life. I’ve been so lucky and blessed to have Laurie. But aides get sick, aides have family obligations and they absolutely need time off!
Finding substitute help can be difficult and nerve-racking, at best. I’ve had some pretty interesting, if not scary experiences with aides and have had to draw the line a few times. Once we tried out a replacement when Laurie was away for a few days. She did not work out. I could have overlooked her refusal to do dishes or to help me with household tasks, but her need to share the intimate details of her love life and her interest in my prescription drugs were where I drew the line.
Another agency once sent an aide who was extremely fragile from years of smoking. She would use my walker to hold onto to keep from falling over during her violent coughing fits. This was a big problem since I was also using the walker to keep from falling over.
Then there was the vegan who would not help prepare meals that contained meat. In addition, she would not use the microwave because she thought the radiation was deadly and the cause of my MS. I could have worked around these limitations, but when she started trying to convert me to her religion I had to draw the line again.
My personal favorite was the lady who quit before I could have the “it’s not working out talk” with her. She seemed fine at first and came highly recommended, but I should have gotten a clue when she fumbled in her purse for a new fentanyl patch as we were heading out the door for an appointment. She told me not to worry because the patches helped her to breathe. Breathe? I found her sound asleep sitting at the kitchen table later that day.
Anyway, Laurie did it! She found two very capable subs with whom I am comfortable coming into my home, helping me with my personal care and taking care of the household activities. I’m sure you all have experiences of your own to share about drawing the line, but better yet, tell me about the caregivers in your life who are totally fantastic. In the meantime, I am going to figure out a way to give Laurie a raise!
Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.