Timothy Lubniewski

Your life looks very different today than it did when you were a business owner and executive. What changed?

For most of my adult life, work was central to my identity. I started my first company at 23, built businesses in the paving industry, and eventually became a General Manager at Rose Paving. I was used to working, competing, solving problems, and always thinking about what came next.

That changed when my wife, KC, developed ALS. I resigned and became her primary caregiver while also caring for our two boys, who are six and five.

My job right now is my family. It is certainly not where I expected to be at this stage of my career, but there was never really a question about where I needed to be.

What does being a primary caregiver actually involve day to day?

It is difficult to describe because every day can be different. You are taking care of the immediate needs in front of you while also thinking about what may be needed tomorrow, next week, or next month.

At the same time, we still have two young boys who need their dad. Their lives continue. They have their own routines, needs, questions, and activities. I am trying to be present for KC while also making sure our boys have as much stability and normalcy as possible.

There is no real clock-out time. That is probably one of the biggest differences between caregiving and a traditional job.

You have been very open about the exhaustion that can come with caregiving. What does burnout look like for you?

A few times each month, I realize I am completely burned out. At that point, I am not looking for a vacation or anything elaborate. Sometimes I just need a few hours of quiet.

That has been an adjustment for me. I have always been someone who pushes through things. In business, if there was a problem, my instinct was to keep working until I found an answer. Caregiving has taught me that constantly pushing without stopping eventually catches up with you.

I am learning that taking a few hours for myself is not walking away from my responsibilities. Sometimes it is what allows me to come back and handle them better.

Has your business background helped you manage the responsibilities of caregiving?

Some parts have. Running companies teaches you to prioritize because you can’t make everything the number-one priority at the same time. You learn to deal with unexpected problems, make decisions with incomplete information, and adjust when the original plan no longer works.

Those skills help, but caregiving is also very different. In business, I could usually attack a problem. I could change a process, hire someone, make a call, or spend money to fix something.

ALS does not work that way. Sometimes I cannot fix what is happening. I have had to learn that being useful does not always mean solving the problem. Sometimes it means being there.

Has caregiving changed your understanding of leadership?

Absolutely. I have always believed in servant leadership, but this experience has made that idea much more personal.

When I ran businesses, I never wanted to be the person who thought a title made him more important than everyone else. If something needed to be done, I believed a leader should be willing to help do it.

Caregiving strips leadership down even further. Nobody is giving you recognition for completing the day. There is no promotion coming. You take care of people because they depend on you.

It has reinforced my belief that leadership is service before it is authority.

How has raising two young boys affected the way you approach this period?

They give me another reason to keep things moving. They are still seven and five. They deserve childhoods that are not completely defined by ALS.

That does not mean pretending everything is normal. Our circumstances are part of their lives. But I still want them to laugh, play, learn, and have experiences they will remember for the right reasons.

Being their father also forces me to stay present. You can be dealing with something incredibly serious, and then five minutes later one of your children needs help with something that seems very small. To them, it is not small. Switching gears is part of being a parent.

What role has faith played for you and your family?

Faith has always been central to how I deal with adversity. I have experienced difficult periods before this, and my belief in God has helped me continue when I did not have every answer.

That has become even more important now. ALS creates uncertainty that you cannot manage away with a better plan.

Faith doesn’t mean difficult days suddenly become easy. For me, it means believing there is still purpose when I cannot see the entire path ahead.

Your family is also participating in a documentary about ALS. Why was sharing this part of your life important?

Our experience is personal, but caregiving itself is much bigger than our family. There are families dealing with ALS and other serious illnesses who understand exactly how demanding this role can become.

If sharing some of our experience helps people better understand what ALS looks like for an entire family, I think it has value.

I also hope it helps people see caregivers. Much of the attention understandably goes to the person who is ill, but serious illness affects spouses, children, parents, and everyone helping hold a household together.

Has this experience changed how you define success?

Very much. Earlier in my career, success was easier to measure. I could look at whether a company was growing, whether we won a project, or whether we reached a goal.

My measurements today are different.

Sometimes a successful day means KC has what she needs, the boys are doing well, and we made it through the day together. That might not look impressive on a résumé, but my perspective on what matters has changed considerably.

I still have ambition. I still want to accomplish things. I just understand now that professional achievement is only one part of a successful life.

You have started thinking about eventually returning to work. How are you approaching that next chapter?

I know I want to return to the workforce, potentially toward the end of the year or the beginning of next year, but I don’t yet know exactly what that will look like.

I am comfortable saying that.

I have built businesses. I have managed people. I understand operations and commercial paving. Those experiences have not disappeared. At the same time, caregiving has changed me.

When I return, I think I will bring a different understanding of people into whatever I do next. Employees have families, pressures, illnesses, and responsibilities that you may know nothing about. I understood that intellectually before. Now I understand it personally.

What would you want other family caregivers to know?

I would tell them that exhaustion is real and that they shouldn’t wait until they are completely depleted before finding time for themselves.

I am still learning that myself. Sometimes I need a few hours of quiet, and I have had to become more willing to recognize that need.

I would also tell people that caregiving does not always look heroic. Most of it is ordinary. It is showing up again tomorrow. It is handling what needs to be handled and trying to keep your family moving forward.

For me, that is where faith, family, and leadership have all come together. I spent much of my career thinking leadership was about taking responsibility when something needed to get done. I still believe that. I just understand responsibility very differently now.