Time to Care: When Caregiving is a Full-Time Job

This article is part of Time to Care, a collaborative story series from Families Valued and Shared Justice, both initiatives of the Center for Public Justice.

By Chelsea Maxwell & Susan

Susan is a mother of two who cared for her husband after he was diagnosed with a terminal illness and then for her son during a serious bout of depression. We talked with Susan about these difficult seasons of work and care, and some of the support that made the difference.

CM: To begin, can you share some background information on your family and some of the twists and turns you have experienced?

S: I met Andy at my first job out of college. We had our first son, Zac, about two years after we married. My intent, as soon as we could afford it, was for me to be a stay-at-home mom. Zac was about two when I was able to quit my job, but I did in-home daycare for another year so that I could help support us. I stopped the daycare when our second son, Brennan, was born. When the boys were toddlers, my husband was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. No one knows how fast ALS will move, and it is terminal, so we were able to get a stipend from our life insurance policy and apply for long-term disability from Social Security. With those two sources of income supporting us, I continued to stay home to care for him.

I was Andy’s caregiver for about five years, until he died. During that time, it was hard to spend time with the kids. I was always taking care of Andy and the house. I feel like I was a bad mom during that time because I didn’t make time for them the way I think I should have. They had to grow up too fast because of the circumstances, too.

You were a full-time caregiver for five years. What did a normal day look like for you?

It’s hard. It’s physically hard work, but it’s also emotionally hard because it’s someone you love. It’s hard because you are watching them deteriorate in front of you. Caring for him required a lot of lifts. Throughout the day, I would get him out of bed, in and out of the shower, off the toilet, into and out of his chair. I had to lift him 20 times a day. And then I also fed him, which took about two hours every time he ate.

How did your life change after Andy died?

Andy died from complications with his ALS in May 2010. It was Memorial Day weekend, so they just had a few more days left in their school year —  they were graduating 4th and 1st grades. Now, my boys are 18 and 15.

I had to transition back to work, but I gave myself a year to figure out who I was. I still haven’t figured that out. But, one day I got a phone call from the boys’ elementary school principal asking if I would fill in for an administrator until the end of the school year. It was only six weeks. After, she asked me to stay on, and I did. This last summer, I started a job more aligned with my accounting degree and early career experience.

The last several years have been hard as a single parent. It wasn’t supposed to be this way — Andy and I were supposed to do this together. It’s hard making decisions yourself all the time, and to feel confident that you’re making the right decisions. You find yourself wishing you had someone to talk it out with.

Can you tell me about a particular time you wished for someone to talk a situation out with?

When Zac was younger, he had anger issues. He would get angry with his brother and hit. I took him to therapy before, and again after Andy died. He was also seen for anger management. He had started to improve. But in his sophomore year of high school, Zac started getting angry again. It started building around Christmas time. He punched a couple of holes in the wall, and he started getting migraines. The migraines were severe enough that he was frequently missing school. I took him to a neurologist, and we tried everything. He had all sorts of tests, but nothing came back definitive. The last thing we tried was a three-day stay in the hospital to break the migraines. That didn’t work either. At that point, the doctor said there wasn’t anything wrong physically or neurologically. He said, “It’s depression and anxiety, so we need to go a different route.”

I got to a point when I realized an extended leave from work was what I needed for my well-being and for my family.

At the same time, he refused to go to school. When I drove him to school, he would refuse to get out of the car. And then if I was able to push him to go, he didn’t do anything in class because his head would hurt so bad. So he would lay in the counselor’s office with his head down instead of doing any work. He was absent for two-thirds of his last trimester sophomore year and almost failed that trimester.

When I learned the root cause of the migraines was depression and anxiety, I was afraid to leave him at home. I didn’t think he would commit suicide, but I wasn’t going take the chance and find out I was wrong later. It made me nervous. He was taking so many medications that if he just took the whole bottle, it would have killed him. I was so nervous. He never expresses himself, so I had no idea what was going through his head. That’s scary for any parent, but I found myself especially wishing his dad was there to help.

In addition to the emotional experience, it sounds like you had to take your son to a lot of doctor appointments. How time intensive was that?

I was taking a lot of sick leave. However, I was trying to schedule appointments to minimize the time I took off and the time that Zac was out of school. My position gave me a little flexibility in my hours, so I could take off early one day and make it up later in the week. I tried to only miss an hour or two at most on any given day. I also didn’t want to take him out of school for appointments when it was so hard getting him to school. I could usually secure one of the last appointments of the day.

After about a week or two of not being able to get him to school at all, and constantly being stressed and worried about him, I realized something in my life had to give. Handling it was all on me. His safety was all on me. I got to a point when I realized an extended leave from work was what I needed for my well-being and for my family. I didn’t expect to get paid. I just sent an email to HR asking for extended time off and explained what was going on. Then, HR responded, “We can get you paid discretionary leave.” It was approved, and I was able to take the rest of the school year off. Zac’s medications eventually started working, and then I returned to work like normal.

How did your employer’s paid leave policy impact your ability to care for your son?

It allowed me to stay home with him and still have an income, which was huge. I was in a position where I knew I was going to have to stay home. There wasn’t anything else I could do. I had to be home when he was home for his safety. I had to supervise his medications and be available to take him to doctor’s appointments. There was no one else locally to help. It was just me. To support us, I originally planned to depend on our Social Security payments that we were still receiving at that time. And, I knew there was still some insurance money remaining. If I had to, I knew there were investments I could dip into. But, that wasn’t at all an ideal choice. Maintaining my family’s financial stability is hard enough already, so the paid leave policy was actually so important for my family. It allowed me to keep my oldest son physically safe, to continue to support both of my sons in general, and to keep all of us financially afloat.  

How is your son doing now?

Zac is so happy at college. He is still taking medication for depression and anxiety now, and I think he will for a long time. But, he is actually thriving at college. He worked hard at the end of that difficult trimester to finish up a couple of his classes. He re-took some classes and did summer school. It was hard work, but it paid off. Actually, he even got inducted into the National Honor Society during his senior year of high school. Between grants and scholarships, he nearly has a full ride for college, where he is studying math education.

All I hope for is that both of my sons continue to thrive. I hope they succeed in college and find jobs that allow them to do the things they love. And, that they eventually give me grandbabies… granddaughters.

Susan is the proud mother of Zac and Brennan. Susan shared her story for Time to Care because she believes that workplace policies that support families are important to cultivating a healthy, happy workplace.

Chelsea Maxwell is the Program Associate of Families Valued, an initiative of the Center for Public Justice, and the contributing editor of Time to Care.

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