Aphasia Caregiver, You have to be your own advocate

Loretta found that while many people wanted to visit after Jake's stroke, they were often frustrated by the "one-way conversation". Loretta realized that she needed to do her own research to find better ways for Jake to keep improving.

I’m Loretta Meffley and my husband is Jay Jacob Meffley and we are from Long Rock, Colorado.

He has a son and a daughter from his first marriage and I have two daughters and we have six grandchildren. They all live locally. He was the guy, you know “dad, my computer’s not working. Dad, can you help me with this?” He was always “the guy” that his daughter depended on.

We did a lot for my daughters and the grandchildren, you know. It’s interesting that most people are pretty uncomfortable. They care, they want to help, they want to come to see you and yet, once they get there, there’s one-way conversation and then there’s a lot of charades and trying to figure out, cause Jake still talks a lot, you just can’t understand what he’s saying. And that gets really frustrating because he’s pretty good, he gets a little frustrated, but usually it’s the people on the other side trying to figure out, so you know, it has affected relationships. After awhile, people get frustrated and you know. We had lots of people wanting to visit so I almost had to schedule, you know, just because he needed to rest. Between his therapy and the rest, it’s exhausting for him being around other people and conversation.

What advice do you wish someone had given you?

To really look at the options and you’re your own advocate. I mean, we had inpatient speech therapists, we had home speech therapists, we had outpatient speech therapists, all different so we went through a number of people and until I brought it up, until I did the research, I brought up intensive or more hours a week, I mean one hour three times a week and then the hours were cutting back it was two hours a week. No one mentioned that “this really isn’t enough” to help him get his voice back.

You have to be your own advocate and ask those questions right away. How else can I supplement this? It’s like, the people who were in charge, the professionals, don’t always give you the information that you really need.