What is the first thing you wish someone told you when you were just starting to take care of a LO?
Back when you were just starting to provide care for another person? You find yourself pondering how much better things could have been if you had known something sooner? I think everyone has a topic where they think “I wish I had known that fact sooner”. A single bit of knowledge can make a big difference in a caretaker’s life; in their LO’s life too.
Frustration and stress makes everyone wish to know how to do something better, how to avoid pitfalls and mistakes. Why didn’t a Doctor or some other medical person just give me everything I needed to know right up front? OK, if someone had told what you needed to know, . . . it might not have helped.
I very recently found myself asking myself the question, ” What are the really important things to share with someone who is just starting to deal with a parent who will need care?” .
What do I tell my friend who is seeing this on the horizon? . A high school friend recently told me his dad also has FTD, there are still a few more tests to confirm and Identify. But they know it is FTD. My reaction was “oh great, I can spare him from the confusion and fear that I felt trying to figure this out.” I shared a good number of the problems Mom and I had dealt with.
In hindsight I’m not sure that I really did my friend any favors.
Before I sat down to write this, I came to the conclusion that I should wait to know the full diagnosis of what my friend’s dad has. Which of the types of FTD he will be dealing with. I could load him up with everything I know about PPA FTD, and what I experienced. His dad may have one of the other types and so most of what I shared may not apply. And potentially end up creating confusion.
First hand experience, insights, and knowledge are invaluable, and gathering that information is important. However, for an individual who wants to share what they know, here are some cautions.
Make yourself available to answer questions. But remember, –What other care providers are facing will rarely be a one to one fit with what you have experienced. There is a difference in seeing a problem and communicating what the problem is. Unknown factors can lead to wrong conclusions. Even if someone fully grasps a topic at first, if they don’t know the terms to describe things you can’t help. They can’t convey what they want to know until they learn the language and how to describe the issues. In other words, information is not valuable to them until they understand the problem they are trying to solve.
Now my advice for new Caregivers:
Focus on the disease, treatments, prescribed drugs and side effects. Listen to how doctors and medical personnel talk about issues, how other caretakers talk about the things you know you need and don’t understand. This may be a whole new world to you, as it was to me. We need to learn the language. Ask specific questions to help get the information you need.
If you can, ease into caregiving. Don’t try to solve problems that are not happening yet. They may never happen, and you may need the time and money you spent doing something else. These diseases can’t be beaten with pre-emptive preparation. Just deal with what’s right in front of you and choose to ignore the scary thoughts of stages/developments you think are coming. And be thankful to the people who want to help.
written by Justin Vance