Below is a guest blog from a friend and, more importantly, a family caregiver. We are very privileged to have her thoughts on home care. She shares insights on many other topics via Twitter (@lttlewys) and her blog (www.lttlewys.com). I read her blog often. I have had to work very hard not to insert “YES!” about a dozen times in the author’s article. She knows what she is talking about.
Best wishes, Bert (and @lttlewys)
Hello. This is not my normal space. Normally, I can be found blogging over here at www.lttlewys.com. However, maybe just maybe, what I have to say will help someone else.
So, hello and thank you, Bert, for this opportunity to hijack your blog for a bit!!
A few months ago, I found myself a full time caregiver to a permanently disabled man. In that time, I have encountered so many helpful people, so many not so helpful people and some downright mean people. I have dealt with numerous doctors, nurses, other caregivers and people that are supposed to be able to help and people that have helped and I have learned several lessons, some easily and some the hard way.
Don’t misunderstand, I think that all these people have the right intentions and I have learned something new from just about each and every one of them. However, assumptions are made and things are misunderstood. I have struggled with this, watched as things frequently went awry due to a miscalculation or misinformation. Support for Home, has graciously allowed me some space here, so that I may pass along my experiences and perhaps I can make someone else’s transition a little easier, with the mistakes that I made.
First, it’s ok to not know what you are doing. If you are not a trained nurse, if you are not a medical professional, it is hard to know what you are doing. Second, trust yourself. As a
caregiver, YOU are with that person the most. YOU know what the situation is and the ins and outs of the day to day. It’s ok to tell a someone no, to say wait, let me explain. They may not like it, but you have to. Yes, that person, nurse, doctor, health care aide, is just trying to help. However, they are only seeing a small glimpse of the full scene, or perhaps they are seeing a good day or bad day and assume that is how it always is.
Second, it’s ok to tell people NO!! Just because you are caring for someone that is homebound, it doesn’t mean that you are always available. Yes, you need to have some flexibility with people coming in to help just not based on their schedule!! This is important, trust me.
Third, ask questions; ask the same question four different ways. If you don’t understand something, tell that person to stop talking and explain it again until you do understand. The person that you are taking care of is relying on you to make informed decisions. This can only happen if you are informed. Don’t let someone brush aside your concerns, don’t let them interrupt you.
Someone that is disabled or ill is going to react to things differently. They are going to get confused easier. YOU will get confused. There will be times when you have
to get tough, when you have to speak to a supervisor. It will not be fun, nor will it be easy.
This last bit has saved my life, my sanity. Get a notebook. Divide it into sections. In the front, list all the doctors, diagnoses and medications and what they are for. In the next section, start recording medication times, dates and any other daily info that seems relevant. I just write the date and then use a line for each medication. Since he takes the same medication several times a day, I just list times next to the medication name. In the last section, write down any and all conversations that you have with anybody that you speak with in regards to your dependent. Date, time, phone number, person (full name), who they are and the gist of the conversation.
This is important. Again, don’t hesitate to stop whoever you are speaking with to clarify something, spell it out for you or to repeat something. You are going to be given a
lot of information, and it is all important, and you will never remember everything. Write it down!
Over the last several months, these are the lessons that I have learned and should you ever have to step into this role, just remember one of the most important lessons I learned. Ask for help!