With global aphasia, Tom has severe physical and speech deficits. Carol has learned to take care of herself and counts herself as blessed that Tom is still alive and making progress.
Unfortunately, I wasn’t home the night that stroked. We were supposed to go out that evening, and he was just feeling a little bit pumped and working on the computer. Anyway, we went out and when I came back at 10 o’clock at night, through the grace of God, Tom had made it down a flight of stairs, but he had literally lost consciousness in his chair. So, after getting all the EMTs and people involved, he was diagnosed with a massive stroke. A bleed, and I was told that he most likely wouldn’t make it to a room. But here we are, a year and half out, and he’s certainly making progress. He’s doing very very well.
How has aphasia affected your life?
Wow. You know every moment of every day from that fateful day has become a learning experience for both of us. I’ve often referred to it as “our stroke” because it never affects one person. Aphasia, apraxia, walking, all of the things that go with a affect everyone. Every single person in your life. So it has been a challenge.
Does Tom have some physical deficits as a result of the stroke?
Yes, and they were quite severe for the first year, his whole right side was affected. He was already blind in one eye. He lost his sight to glaucoma years ago, but he also has difficulty hearing and his coordination is not quite right. So it’s been very very difficult and even as he learns to get the use of his limbs and things back, he doesn’t actually comprehend exactly what’s happened to him completely.
When was his stroke?
April 19, 2012. So we’re looking at about 17 months.
And do you guys have family who helps out?
Yes and no. Right now, I have family support so I can be here and take advantage of this, which has been wonderful. But for the first year, my sister is close by, and she’s been a tremendous help. But my children are scattered all over, so it’s just been difficult for them. They all work to be available on an everyday basis, so it’s been Tom and I.
Do you have any advice for caregivers or other families with aphasia?
I learned early on that I’m no good to Tom if I’m not ok myself, and sometimes that thought becomes overwhelming because I think to myself, “what would happen if something happened to me?” So I have tried very hard this last year to get my rest, to eat a little bit better, to relax a little bit more and to continue to enjoy Tom. Tom has been affected by this but he’s here and I talked to him and I relate to him and that helps me because a lot of things are lost. Your part of the marriage is lost. Your conversation is lost. Memories are lost. But everything isn’t lost and as a caregiver if you look at the person that you’re caring for, especially if it’s your spouse and a deep loved one, you realize how blessed you are in the end. That they’re still trying. And you’re still here and able to make it through.