How a caregiver learns to care for herself

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.

More than 65 million people, or 29 percent of the U.S. population, provide care for a chronically ill, disabled or aged family members or friends during any given year, and spend an average of 20 hours per week providing that care. And more than three in 10 U.S. households, or 31.2 percent, report that at least one person has served as an unpaid family caregiver, according to AARP.

That means that even if you aren't a caregiver now, it's likely that you will be someday.

Ev Emerson, the wife of Bruce Kramer, teaches music at the Normandale Elementary French Immersion School in Edina, and is also looking after her husband after he was diagnosed with ALS. He was worried when he was first diagnosed about the effect his illness would have on his wife and their relationship, along with the rest of family.

"I found myself hovering over my memory of our marriage vows like an out of body experience," he said two years ago in an interview. "I actually wondered if Ev had any inkling of what was to come?"

As the disease progressed, they moved into a new kind of relationship, with a deeper spiritual bond but also a recognition that Ev needed to adjust her life and care for herself so that she could support her husband the way she wanted to. Below, they share some thoughts on the challenges and rewards.

On caregivers adjusting their lives

Ev Emerson: It's going better now that I'm working part time. It took a really bad breakdown of health for me to finally realize that I can't work full time. In November I couldn't get well. I came down with something, missed two complete weeks of school. It developed into pneumonia and I realized, something has to give. So, I have since then dropped my work schedule down to about 75 percent and it just buys me a couple hours each day to take care of myself and that's been a very good thing to do. ... I talk about filling the well because my job is such, I'm a teacher and I'm giving, and giving, and giving and my well gets dry so I have to have things that will fill the water back up again and those three things, I tell Bruce if I can exercise, meditate, and play the piano, those seem to be the things that fill up the well again for me so I can go on.

Bruce Kramer: Those are things that get her recentered and then our time is much, much better even if I have one of those horrible, hard nights where I just cannot sleep because of the pain.

On keeping an even emotional keel

Emerson: I bet Bruce would probably admit it that we have probably cried together at least once a day over something. And then we move on. I feel so grateful most of the time that I don't like to dwell on the things that are unpleasant.

Kramer: You know, this is a very busy place. We have different people, volunteers, and paid caregivers coming in everyday and I'm never alone anymore. I have somebody with me 24/7 and so when it's just Ev with me it not only does it remove the busyness from the environment but it also breaks down a lot of the defenses -- they kind of go out the door with the last person who was here and I think that just leaves us both vulnerable to triggers. ... Ev might be thinking about something that she knows I can't participate in. And, and then we kind of get a little teary eyed and we come back together and center back into the moment. We sure do enjoy our time together in the late evening, though, when it's just us.

On losing control

Emerson: Even a year ago, I'm thinking, I used to sneak out. I was able to leave Bruce an hour at a time so I could sneak out and ride a bike for an hour and then come back. I can't do that anymore so ... my world has shrunk as Bruce's world has shrunk.

Kramer: Control is an illusion and ALS is one of those things that it's quite adamant that you learn that lesson and you learn it soon. ... You think you have control. You think you can place that control but this body will do what it will do and I can't make it do any more than that.

On advanced care directives

Emerson: I remember filling out the POLST [Provider Orders for Life Sustaining Treatment including Do Not Resusitate and Do Not Intubate orders] form and that was an opportunity we both sat and cried. ... I accept his decisions, what he wants to do, but yeah you look at that, it's right out in black and white and I have to respect that. ... I worry that I would be there -- well of course I would be there -- if he couldn't breathe and I really don't wanna even imagine that, what would happen. I know I'd call 911, but I know they would also look at the thing that's sitting on the refrigerator and it's ... yeah... It's really hard to contemplate that.

Kramer: I think, in a way, it's healthy. ... I wonder why we don't have Ev's POLST form up, frankly. And I mean, why, why hasn't she talked with her doctor about it? And do you have a POLST form? Why not? ... There are times when decisions get taken out of my hands and these are my wishes, as best as I can express them. I think that's a healthy thing to do.

Emerson: I remember when we talked at the Mayo about end of life and we talked with one of the doctors and he said, what you don't want to do is have to make a decision in crush of the moment in an emergency. You don't want to make that decision because once you are intubated, then what do you do? So it's been better to have thought out ahead of time so that in that emergency you already know what your loved one's wishes are and you go, you do that. It's like practicing for a fire drill, so that when the real thing happens you know what to do and we, we have done that. We've taken those steps. It wasn't easy to talk that out, but [sigh] that's part of this whole process.

On the strength of their marriage

Kramer: The emotional dynamic? Oh ... I don't see a change. I mean, again, I don't want to say we're lucky, but, there's a saying about riding a tandem bicycle, that a tandem bicycle will take your marriage to where it is going twice as fast. And in a lot of ways, this, for us, has been like a tandem bicycle. We -- there are places where there is a depth of connection that I don't believe we ever knew before. There are other places, of course, where I would dearly, dearly love to take a walk and hold hands. That would be, that would be delicious. But, those are places you let go of.

Emerson: We've pared this relationship down so that we're just both open to each other. It's a different depth. I feel like a different depth of relationship.

Kramer: There are some things that, with my particular progression with ALS, that have made it easier. I mean, I don't have frontal temporal dementia. [But as] I continue to lose physical function, I feel this deep, spiritual intertwining between the two of us.

On keeping the spark alive

Kramer: That's a secret.