Jesse
Listening, then Caring
"My relationship with Michele is like any other relationship. It constantly changes, but you work it out together."
"My relationship with Michele is like any other relationship. It constantly changes, but you work it out together."
UCB Advocate, Jesse, cares for his wife living with epilepsy.
"My relationship with Michele is like any other relationship. It constantly changes, but you work it out together."
He maintains efficient communication as a caregiver and strives to achieve balance between the roles of caregiver, husband, and individual. This is how he does it. I was an active-duty service member when Michele came into my life. We met, I proposed, and got married all within 90 days. We’ve been together 35 years (and we’re creeping up on 36.) Michele lives with epilepsy. She’s dealt with seizures since the fourth grade, so she’d already been receiving care when I met her. I just picked up as her caregiver where her folks left off. Within the first year of our marriage, I really worried about her but, The Lord says not to worry. If you’re worried all the time, you can’t get things done, right? Doesn’t mean I’m not concerned though.
Michele is by herself most of the day, but she may call me and say “hi.” When I leave in the mornings, I like to set things up in the house for her in a certain way. When we get out of her routine, things tend to go awry. When we’re together, I try to watch what she does, and I know some of her seizure triggers. Every now and then, like any person, she gets down in the dumps partly, because she’s not able to contribute to the home situation. But I reassure her, “I want to take care of you.” We both have good days, and we both have bad days. I’m sure you’ve had a friend or loved one who was down in the dumps. Well, you know, if something is going on you can kind of tell in their voice. So, like I mentioned, I normally call and check in on Michele throughout the day. But one day, while we were on the phone, I could just tell something wasn’t right. That’s when I left work. As soon as I got home, she had a seizure. That’s why communication is so important. Communicate with your co-workers. Communicate with your neighbors. You don’t know when there will be an emergency. I don’t take for granted that things are okay.
I want Michele to have the best quality of life. Since she doesn’t drive, I help her get to her appointments. And I just don’t go drop her off, I take time off work to be at the appointment with her. When we go to the store, I give her a bit of space. Every 5–10 minutes, though, I engage her, talk to her. She has complex partial seizures, and some stop her from what she’s saying or doing. In addition to complex partial seizures, she’s got this amazing personality. Epilepsy does not define her. I joke and say she’s very timid and shy. (If you’re wondering, she’s quite the opposite.) She’s very outgoing and likes to get out to meet and greet people. She doesn’t like to sit around and ho hum the day away. She’s a fighter. She’s a pretty lady, but it goes deeper than looks.
When you’re a caregiver, you’ve got to take time for yourself. If there are ladies’ outings, I like to get Michele involved in those. I don’t like to be too far away from her, but I will try to go to the gym, work out here at home, or go do some things with other folks. When you’re married, you want to be together all the time at first. But you’ve got to have some “me time.” The same applies for being a caregiver. Take care of yourself so you can best take care of your spouse. No matter who you are, marriage is going to change you in some way. And that’s important to acknowledge, especially with epilepsy. We all have to change to a point. So many people think it’s about changing the other person, but we have to change ourselves.
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