Managing ALS along with the stress of caregiving

Editor's note: This is part of our continuing series of stories about Bruce Kramer, the former dean of the College of Education, Leadership and Counseling at the University of St. Thomas, as he copes with life after being diagnosed with ALS, also known as Lou Gehrig's Disease. You can read all the stories in the series by clicking here.

It's estimated that 45-65 million Americans provide care to a loved one. And it's not an easy job. The other day I did a web search using the words "caregiver" and 2.4 million results popped up.

Bruce Kramer and his wife, Ev Emerson, are among those caregivers. As ALS slowly saps Bruce's health, both he and Ev are learning how to help him manage the disease -- how to manage the unknown.

"You have to go up and down and accept that there are going to be days that are really hard and those that aren't," she said recently. "I have my days that I call my leaky days, where it seems like all day long my eyes leak and ... once that kind of day passes, it's usually fair weather and I accept that and I don't try to fight against it. I have to understand that is part of the process."

Cathy Wurzer: I have to ask, what brings on the "leaky" days?

Ev Emerson: Oh, sometimes ridiculous things. Sometimes just the smallest thing. I talk about being ambushed by opening a photo album, and seeing Bruce in a triathalon, for example. And then it just brings on lots of sad feelings. Something as small as that will start a leaky day. (laughs) But they don't last long, so that's good.

Wurzer: Dealing with ALS, you do a lot of processing of emotions I'm sure -- with any disease for that matter -- especially as a caregiver. How is that working for you?

Ev: I tried writing. Bruce enjoys writing to get his feelings out, and I can't seem to do that. I'm more of a talk therapy kind of person. So immediately I contacted a grief counselor. And that has been very helpful to me, to talk to somebody else in a safe place about my feelings. That's how I deal with it.

Wurzer: Ev is a classically trained pianist. A love of music is something both she and Bruce Kramer share. They also both find it hard to ask for help.

Ev: It's so hard when you're a doer for other people. A teacher is what I am. It's really hard to take help. But honestly, we couldn't have made the moves we've made without lots of help. And I'm so appreciative of that.

Bruce: I've written about this. It's probably the hardest thing I've had to learn, is to ask for help. ... It's a hard thing to do, especially when, I have always been the guy who took care of this family, and that's not me anymore.

Ev: Well, I know it's really hard for Bruce to ask me for help, but I laugh and say, "Well, you cooked dinner for me for at least 30 years, so I figure I've got at least 30 years of giving back to do, before we're even on an even plane." So I don't think about it as a burden, it's just what you do for somebody that you care about. It doesn't bother me.

Wurzer: Research shows that people who care for others with chronic illness can put their own physical and mental health at risk.

Bruce: I think that if you go onto YouTube and you look up caregivers, and pair that with ALS as a search term, you can actually find films where it will show pictures of the caregiver pre-diagnosis, and then two years in, five years in, eight years in. And they're bent and grayed and haggard. And I look at these things, and I look at my beautiful wife and my wonderful kids, and I don't want to do that to them. So care giving is something that's really on my mind a lot, the effects of ALS on not just me and on my body, but also on Ev. So I write about that.

I'm reading from a blog entry called "The Sum of My Fears:"

I've been really lucky in my life. I have a great wife, great kids, and great job. When Ev and I got married, we vowed to each other, "for better or for worse." ... After my diagnosis, I found myself hovering over my memory of our marriage vows like an out of body experience. I remember actually looking down at these two earnest young people, Ev and me, so in love, so naive. I couldn't help it. I actually wondered, if Ev had any inkling of what was to come, would she have cast her lot with me? And as I floated between memory and presence, I realized that the knowledge I was coming to understand was not only my fear of what ALS was doing to me, but it was the dawning realization of what ALS care was going to do to my beloved partner and my wonderful sons."

Wurzer: The worry for you, Bruce, is that you're a burden?

Bruce: You know, it's hard enough keeping your own head above water, getting dressed and ready for the day, and going out and working in a career... but then to have to do that for someone else, requires an extra degree of planning, an extra degree of thinking through things that normally we just do them. And that is tiring. ... And then of course it changes the dynamics of a relationship. I can't tell you how many times I've thought about how the last time I saw Ev helping someone get dressed or get ready was when our two children were babies. And you know, I don't think about myself that way. But it's one of those little thoughts that jumps into your help and plays around. At some point I have to lose those things. But at some point I think to myself -- you know, this isn't what she signed up for.

Ev: We both signed up for that. Who is to say I wouldn't have been the sick one? People get cancer, they have accidents. And I have to trust that had it been me and not you, you would take care of me. That's the deal.

Wurzer: You had certain dreams you wanted to fulfill, as people who are together. And there's a loss to that, when you have an illness. Have you experienced that, and how do you deal with that?

Bruce: I think that in many ways -- when I write -- it's about the fact that I have to reframe my dreams. Reframe the future that I had projected -- for me, for us. And the fact that it comes so quickly... it's not like you're kind of slipping off gently into that good night. ... When I write, it's taking these very simple everyday things that we just take for granted as humans, and recognizing each one of them has greater meaning, and the dreams have to be reframed, or you drive yourself crazy. So that's what I do.

And now, I think what I am dreaming is, I hope I live to be 60. And I'm hoping that in that whole time I will be the person that still gives Ev the energy to go on. And that's not a bad dream, not at all.

Wurzer: Ev?

Ev: I like the 60. That's a lot better than what we learned from the literature about survival rates. I'll take 60, that sounds good to me. I'll take 65, if you've got it in ya.

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You can read all the stories in this series by clicking here.

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