Steve Guttenberg's Caregiving Journey for His Dad on Dialysis

Us Weekly magazine is famous for its "Stars — They're Just Like Us!" pieces and that same conceit shows up on every page of the poignant, personal, new book by comic actor Steve Guttenberg, "Time to Thank: Caregiving for My Hero," about the caregiving he did for his late father, Stanley. 

I felt that way interviewing Guttenberg about the experience, too.  

You likely recall the beloved '80s icon from his roles in the four "Police Academy" movies, "Three Men and a Baby," "Diner" and other films. You may have even seen him on Broadway in the 2011 Woody Allen comedy, "Honeymoon Hotel." But you probably don't know Steve Guttenberg, family caregiver. 

In his book and our interview, Guttenberg gets candid about assisting his dad with kidney dialysis treatments in Phoenix, the toll it took on both of them and the grief he's been living with since his father died at age 89 in July 2022. 

Calling family caregivers "an unsung group," Guttenberg says: "Nobody really delves into what it's like to take care of somebody who's sick, to make them food, to feed them. What it's like to put their pajamas on, to make sure they're safe in the shower, to take them to the bathroom."  

When you're a family caregiver, he adds, "you find yourself in a room with someone who's very ill or needs help and it's just you and them for the most part." 

That's why he wanted to write "Time to Thank."  

Says Guttenberg: "I wanted to connect with other caregivers and say, 'I know what it's like. You know what it's like. We're together. We're one. We're an army of 53 million.'" 

Here are highlights from our conversation about Guttenberg's caregiving for his father, plus his advice for others who are, or will be, family caregivers.

Next Avenue: Tell me about your dad. In the book, you call him your hero, your rock, your wisdom.  

Steve Guttenberg: My dad was a guy who was very cool. And he always told me, 'Don't lose your cool. That's a very, very important thing.'  

He was a New York City policeman and he never complained. He loved his family.  

I was a rambunctious kid, a troublemaker. Whenever I got in trouble, he just brought me upstairs, we'd sit on the bed, he'd look at me and go, 'Steven, what's wrong with you?' And I would say, 'I don't know, Dad.' And he'd say, 'Okay, just don't do that again.' And it worked.  

I loved him with all my heart and soul. My hero. My hero in every way. 

You wrote that when you were little, your dad helped put on your pajamas and when you were caregiving, you were doing that for him. The world flips in some ways. 

It does. And I did not want it to flip. I did not want to have to take my dad in the shower and help him in the shower, but I did.  

Sometimes, you've got to make light of it. 'All right, dad, we're going in the shower. Don't show me up with your muscles.' 

But it really breaks your heart. My dad taught me how to ride a bicycle and eat with a spoon and put on my pajamas and wash my face and shave.  

How would you describe being a caregiver for a parent? 

You've got to have a really tough stomach. You've got to be Superman or Superwoman. To be a caregiver, you've got to be made of steel, because you're going to see things you never thought you'd see in your whole life.  

There are some people who say: 'I can't do it. I need to put them in a facility.' And that's very honest. But if you can do it, there's a lot more love at home.  

When you're taking care of somebody, it's very intimate. It changes you. 

One reason some people feel they can't provide caregiving is they're unprepared. It comes out of the blue sometimes. Then, suddenly you're thrust in it and don't want to do it wrong. 

You're right. It's so true. And you're afraid … No one's prepared to be a caregiver.  

You know what it takes to be a caregiver? You're a human being. Someone's hungry? Make the food, feed them. They've got to go to the bathroom? Bring 'em to the bathroom.  

Sometimes, caregiving requires special expertise. You and your sister, Susan, got trained to become dialysis technicians for your dad so you could both administer the treatments in his home. 

We were able to cannulate my dad [inserting dialysis needles] and take all the blood out of his body and put the blood back in. The Veterans Administration was wonderful to us, giving us all the equipment we needed because our dad had been an Army Ranger.  

How did your caregiving start and how did it progress? Take me back to when you were beginning to make the drive to your dad from Los Angeles right after your wedding in 2019. 

I would get in the car about 3 in the morning and drive 5½ or 6 hours and take my dad to the dialysis center. I would stay Monday, Tuesday, Wednesday and Thursday and then drive back to L.A.  

At the very beginning, the dialysis was uncomfortable and I would sit and talk with him, laugh, chat. My mother, sister and wife would be there and after dialysis, we'd drive home. My dad would drive until he wasn't able to drive anymore.  

Slowly, the dialysis took its toll on him. It started to lessen his appetite, and he was only able to eat a renal diet. He missed tomatoes, beer and things like that. He started to lose weight, and it was very difficult to see a man who was 190 pounds of Jewish steel start to bend inward.  

When you were starting the caregiving, what did you think it would be like?  

I didn't know what it was going to be like for my dad, and I didn't know what it was going to be like for us. Slowly, it had its way with us.  

We didn't know that he would be so tired after dialysis — it's about a four-hour process. You come home and you're wiped out.  

And then there's the stress on the family, the pain of seeing somebody not being able to do what they used to do. My dad was the lion in the room until the day he died. But it's hard to admit that the lion is getting weaker. It's lousy, man. 

What was your caregiving like during COVID?  

It was horrible. My dad had an issue where he had to go to the hospital, but we weren't allowed to visit him. He was screaming, 'Please come in, take care of me!' Nobody was coming in.  

My sister and I went to the president of the hospital and begged him to allow one of us to come in and take care of my dad and we were then able to. When I opened that door and he was in the room reading the Wall Street Journal and looked up, it was the greatest moment ever.  

My dad saw me and said, 'My son! My son!' I said, 'Dad, I'm not going anywhere. I'm never leaving you.' 

In 2022, your dad was able to start dialysis at home. Tell me about that transition for him and for you and Susan.  

My sister found out that there was a medical school that trained civilians to give dialysis. We trained every day for three months… Then we were able to set this all up in my mom and dad's den— a sterile medical facility. Amazing.  

Every morning, Susan would set up the machine and I would help cannulate him. At the beginning of the process, it was two days a week, then three, then four, because his kidneys were failing even more. Then it was five days a week, sometimes six or seven.  

It was a blessing to be able to do it at home, but at the very end, my dad was shaking. It was so painful for him.  

How did caregiving change you physically? You had ligament damage in your leg from all the driving. How are you now? 

I was driving 800 miles a week and my legs started to really have insane pain. I went to an orthopedic surgeon, and he said, 'Your ligaments are just so out of whack. I don't know if they're going to come back.' They came back, thank God.  

I also stopped working out; I didn't have the enthusiasm to go to the gym. So, I started losing all my tone and the body that I've worked so hard to keep healthy.  

I started eating a little less healthy, too. I wouldn't eat breakfast because I'd jump in the car to see my dad. And I wouldn't eat lunch until he ate lunch, which was basically three in the afternoon, if we were lucky. Then, we would get back to the house and the family was having dinner at six. He wasn't hungry and I wasn't that hungry.  

Everything gets thrown off, but you sacrifice it all for this person who needs you. 

When did you start taking better care of yourself?  

January of this year — a year and a half since my dad passed.  

Grief also has its way with you.  

Tell me about that. 

Grief is an otherworldly force.  

I was grieving during the process. I didn't want to admit that my dad was dying. So, I said to everybody: 'No, he's going to get better. He's going to come out of this.' I didn't admit that he was really sick until the day he died.  

That day he died, my sister said, 'You can go, Dad, you can go.' When she walked out of the room, I turned to my dad and said, 'Don't go, Dad. Please, Dad, don't go.' 

And when his fingers were turning gray, which the hospice people said was the sign, I rubbed his fingers and said, 'I'm going to get the blood back in your fingers, Dad.' 

Has anyone helped you deal with the grief? 

I had a wonderful grief counselor for over a year and I'd speak with her every two weeks.  

How is the grief for you now? 

The melancholy is still with me. That melancholy will never go away, in a sense. But we go on.  

When I go to my dad's grave, I lie down where his head is six feet under and put my head on the ground. I sit and talk to him. I won't weep as much as I used to, but I weep a little and tell him how much I miss him. 

He brings me signs. When he first passed, and still to this day — white feathers. I find white feathers everywhere. 

What do you think that means? 

Well, I looked it up and it's a sign from an angel. It's sign from someone who passed. 

I opened the door one day and right on the doormat was a white feather. I looked at my dog one time and he had a little white feather on his nose.  

What advice you would give people going through the process of being a caregiver? 

Try to get good nutrition; eat a good meal when you can. Scheduling wise, you're going to have to go with their schedule. When they sleep, you can sleep. When they're awake, you're awake.  

I would say if you can, watch comedies, watch my comedies (laughs). 'Police Academy,' '3 Men and a Baby.' Try to keep it light.  

And then give yourself a break. Give yourself a moment to cry, to let it out. Don't feel less of yourself if you get emotional. 

Always try to make the person you're caring for feel like what they're going through is okay.  

Reach out to other caregivers. The Rosalyn Carter Institute for Caregivers in Georgia has incredible resources and there are caregiving sites and chat groups.  

There are lots of grief counselors and grief groups, too. Reach out to people who will talk to you and say, 'Man, I'm really having a hard time.' Talk with somebody who has an empathetic heart. Don't isolate yourself.  

Just know that you're doing one of the toughest jobs in the world. Give yourself a pat on the back. 

Overall, how are you doing these days? 

I'm grateful for life. My dad would always say, 'When you do things, try to enjoy it. Enjoy life.' So, that's what I'm going to do. 

Richard Eisenberg is the former Senior Web Editor of the Money & Security and Work & Purpose channels of Next Avenue and former Managing Editor for the site. He is the author of "How to Avoid a Mid-Life Financial Crisis" and has been a personal finance editor at Money, Yahoo, Good Housekeeping, and CBS MoneyWatch. Read More