Tuesday, June 12, 2012

Drawing the line

Susan Skoney

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.


  1. Fortunately, I am able to stay alone while my husband works for the most part. I don't like it, and it's scary for both of us, but he works nights so I can mostly just stay in bed except for trips to the bathroom, which I can usually manage on my own. He IS my caregiver, and I'm thankful that, so far, we are able to make it without having to disrupt his work. We are aware that that's a possiblity in the future, but for now, this works for us. He is fantastic about taking care of me. He does whatever I need him to do for me, works, and takes care of the house. We spend nearly every minute he's not at work together, and we wouldn't have it any other way. God surely sent me a man to help care for me, and I'm so thankful He did!

  2. How are you able to afford an aide? Your husbands income? Never had an aide, has always had to rely on my parents to do everything, even though they're in their late 60s and have full time jobs. :(

    Though "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." - Ok, I guess people draw the link different places, because I wouldn't have had a problem with that, I would have thought it nice to have something to talk about, whatever it is.

    1. I think the implication there was that her interest in medications may have been more recreational than informational.

  3. Wow. What an interesting story. I was diagnosed 5 years ago when I was 21 and, luckily, my MS has not progressed to that point yet. It frightens me to think about what the future has in store for me, but it's good to know that, even when things get worse, there are support groups in place ready to help out.

    I've recently started blogging about my experiences with the disease and would appreciate anyones feedback and thoughts :-)



  4. Not all care givers are good people and beware of being taken advantage of. My mom had a caretaker placed by a local elder care agency. To make a long story short, the caretaker walked off with all my moms money. Almost a million dollars. Now she has no money to live on. I can't even go after her as I don't have the money for an attorney. Be very careful.

    1. Attorney?!? You need the police. That is a crime. You can also pursue the agency that placed the individual by complaining to your state regulatory boards. It really is almost an obligation to not let something like this go. If what you say is true, this person is now free to victimize someone else. Those of us who depend on paid caregivers really need to be protected from predators.

  5. Susan, this post is so timely for me, because I have just been approved for a county program that will provide me with an aide. I am apprehensive because I have heard so many horror stories and also, after surgery three years ago, experienced a less-than-stellar aide myself.

    It is a shame that people who do our hardest jobs, such as aides and child care workers, are paid such meager salaries. I know most aides are good people, so I am just keeping my fingers crossed that I am as lucky as you and find someone who is a good fit. :)

  6. I am the carepartner not the person with MS but boy do all of these stories ring a bell. My wife and I have depended on Home Health Aides and CNAs to take care of her while I'm at work for more than 15 years now. We have come to that point that when anyone asks how we are doing the answer is always dependent on the quality of her aide on that day, not on her symptoms. We have had many different aides over the years and in fact have changed agencies three times. We have been very lucky given some of the previous comments that we have never encountered a large scale thief, only a few that could deplete the pantry and fridge quicker that the grandkids.
    Our greatest hasssle has been that when a aide needs a day off for whatever reason the agencies almost always respond with "we'll try to find someone". Do you remember as child when your parents said "we'll see". Same thing, with the agency, it means nobody's coming. For my wife who is no longer able to do much of anything for herself that means a day in bed, with nothing to eat and the same televison station all day. While we all pray that her bowls hold out until I can get home from work.

  7. At first, I had a problem of how to deal with caregivers. Good thing my husband whose currently working at terminal in home care services gave me some tips on how to deal with caregivers.