My Wife Jill, wrote another note to a fellow caregiver…and she didn’t mince words…. Just reading this makes me proud of Jill!
Your question seems to be the most common question among caregivers. Disappointment and frustration mixed with fear and loss often creates an environment where all parties are stuck, unable to move forward. It is an awful place to be.
I have been my husband’s caregiver for 11 years (massive stroke at age 51). We are extremely blessed that he never even considered not recovering. Full disclosure: the first few years he was so disconnected from reality that he didn’t really know how bad off he was. It took years for him to understand his situation. The good thing was that we had been working so hard on recovery and had made such progress that when he did understand, he was motivated to keep improving. We regularly meet with survivors and caregivers and offer encouragement and perspective.
That all being said, I am an advocate for strength and goal setting. So here it goes:
There are moments in our lives where we have to look in the mirror and ask ourselves “Who am I really?” More importantly, “Who do I want to be?” Is quitting is better than trying? Is today going to be better than yesterday? Did I teach my kids to quit when things get hard? What are they going to see when they see me, now that things are hard? Is it all just about me or do I care how my actions affect others? Does Poor Me EVER end well?
How you and your husband answer these kinds of questions will help you chart your course foward. Recovery is a choice, a choice we have had to make every day. We decided together that life was still going to be good, and it is! It is different, but it is good. Hard, but worth the effort.
Our life changed dramatically in an instant, as has yours. I pray you will take this time together to decide what you new life is going to look like. We only live one day at a time so I encourage you to start with that perspective. Today we will accomplish _____________. Remember that you are in this together. Together, you can create a beautiful life worth living. Start Now!
I don’t know what it is…but I just love speaking at schools. I spoke for exactly 30 minutes (I timed myself) and then Jill answered questions for 45 minutes. I must say, Jill was phenomenal at answering all the different questions that the audience had. When we spoke later, Jill and I were very impressed with the thought process questions.
We were speaking to Speech Pathologists. Unfortunately, that was the ONLY thing I didn’t receive much help when I was in rehab. When I first had the stroke, we were working on making me stand up, to get rid of that cane, and to be able to use the right side of my body again. We figured, speech would come back. We were wrong! Who knew! I am a month away from the 7 year mark …and I STILL have to work on my speech.
I am involved with an Aphasia group, who is on the east coast. Currently, I am working on a few things and I will let you know of my progress. I am really excited! If you have Aphasia, the you need to talk will Bill Connors. The guy is amazing!
Jill spoke to Speech Pathology students and faculty at Pacific University Wednesday night.
Usually, we give the speeches as a service to those who want to further their careers in helping those who have trouble communicating. We feel this is a good service to let them know that what they do matters.
What made this audience so special? The questions they asked Jill at the end of this presentation…and all the feedback they gave her. There was a line of people, who purchased the book, and wanted Jill to sign it. Some had family members who were struggling, some wanted a better understanding of their patients, and others just wanted to talk to us. Jill had a great time and said it was one of her favorite audiences.
God Bless Pacific University and all that the students there are working to accomplish. Seeing this made us happy to keep speaking and spreading the word.
It was during lunch and I must say, it was extremely successful. Jill spoke for 10 minutes and then people asked questions for over an hour. WOW. They asked everything! A few people even decided to ask me a question.
The first person asked me a question. For the first time, I didn’t understand what he meant. I thought about it, but was uncertain how to answer. Luckily, Jill answered. Then, someone else asked a question. Again, I didn’t quite know what he meant. Normally, I understand everything…I just can’t get the words out. I never had this issue before of not understanding the question. I will have to see if this continues.