What do you considered the best document, flyer or such that would help my home aide understand my disease. Maybe I am wrong but I assume that would be the best way for her to undestand some of the priorities she needs to attend to. The thing that seems the hardest for them to get is how intensely sensitive I am to dust in my eyes. A new person and agency has started. The last agency person while I came to like her very very much never got this. My left eye damage is worse this year so it doesnt take much to irrriate it into days of problems.
me :)
Kathy, I think you would be the best tool to educate your care-giver. As to reading a book or pamphlet, you never know how good a person can read and understand things.
If you take a little information at a time and sort of talk it through during her shift, that would give me the best feeling of how she/they are learning. Lucy
kathy, Lucy is right about you being the best one to explain and teach your home care aide. This is the best way of teaching someone something. This way she can ask questions when she thinks of them. You can also point out all the diferent ailments that are possible and then explain the ones you have more in depth.
Many people can't read that well or are dyslexic---you would be surprised at how many people suffer from dyslexia and they are burdened by having to read things. Also, they are embarrassed many times when they have their learning challenged. Irish ;D
I would suggest "Spoon Theory" as a good place to start.
Try to think about some of the specific do's and don'ts as well. For example some of the specific "don'ts" about dust might be:
Don't run the vaccum when I am in the same room
Close the windows in my bedroom
"Do's" might be:
Help me put in my eye drops every two hours
Clean the humidifier every morning and restart it as soon as you can
I say this because some people are good with generalization like "I have problems with dust" and can figure out what activities that impacts, and some aren't.
As you come up with key things that are do's and dont's, you might make two lists where you write down what you want. But as several people mentioned, not everyone is a strong reader.
I understand there are challenges with reading at times but I see no harm in offering some basic literature to your new aide. Here's a link to the printables from the Sjogren's Syndrome Foundation:
http://www.sjogrens.org/home/about-sjogrens-syndrome/brochures-and-fact-sheets (http://www.sjogrens.org/home/about-sjogrens-syndrome/brochures-and-fact-sheets)
If you have a concern about the information being understood, you could start your next meeting with "Did you have any questions about Sjogren's? I really want to impress the importance of the eye symptoms with you."
This gives an opportunity for the aide to say he or she needs to know more without causing any embarrassment if the literature was not helpful pr not understood. The printables are pdf and seem to be broken up by major symptoms there toward the bottom. You can read them yourself and choose which ones are most important for you to relay. If your aide doesn't have problems reading this is an opportunity to read up at home and perhaps come up with some special strategies for your care.
I think warmwaters idea is great too. Make your own "brochure" about your specific needs that you can go over verbally to ensure you are getting the best care. Certainly, most people I know in the home aide field truly want to help their clients and information that helps achieve that end should make you both feel better.
Best of luck.
This all helped. Thank you so. Joe's idea of the Spoon Theory' is a great if reading is not an issue. My aide is in school for a degree so I dont think reading is an issue. What I suspect is a couple issues is that she is new to aide work and she may have been told to work with out me pushing.....pushing isnt the right word. But when the agency nurse was here I was searching for a word and she came up with working independently. I gently corrected her trying to point out that she would need basic knowledge of me and my priorities tho.
I liked very much the point about generalization versus detail. This is what I think I was finding hard about the lists I have tried to do. It just puzzles me in that my last worker was with me for over a year and tho I had tried never got the dust thing. I consider myself to be a better than average communicator. I admit I am not doing as well as these days given the brain fog and high stress of my health being complicated by not only myathenia gravis but now myositis coming on in my face. I am seeing a new neuro Nov 2 and am very hopeful as my great pulmunologist is part of her team so as he is one of the most clearly 'on my side' docs things will get better.
The last person I had I had tried to do it in ways that were as was first suggested. I explained to her myself. It is in the face of that not working in the area of dust as I said I am looking for options. Now the last person Jenny was someone who came to obviously care about me and she would stop and sit and chat briefly if I was having hard time. This meant alot to me. She had cared for her dad at the end of his lfe I later learned and I believe this was part of why she had such a caring way. Kathylee
kathylee, When I worked as a registered nurse I was hired also to do classes for the training of new nursing assistants. One things of which I am sure. A person can't be taught to be a good aide. They either have it or they don't. The ability to understand another persons suffering and their health issues is something that not all people can learn. It is something that I think one is born with. Also, the ability to care is hard to teach. If anything it is learned in the lap of a mother and father.
So, just be patient about the training. I used a lot of examples in training. Many people do not "get" germs or probably dust, for that matter. Maybe a little conversation about the way dust shows up in the sun's rays. When it settles on the furniture, it needs to be removed. Just a few thoughts. Maybe googling "compassion" might help you come up with ways to work with your gals. It does take a long time to train someone in the ways of healthcare. Good luck! Irish ;D
How about making a "Care List".
Heck I did that for my pet sitter when I went on vacation.
I keep a list I update every so often on my felines so all I need to do it print it out.