Sonja: He ended up with a brain tumor

March 1, 2021

 

 

 

 

 

 

 

 

My husband I were happily married. He was my Prince Charming, and nine years into our marriage he had these terrible headaches.

He ended up with a brain tumor and had surgery that left him physically and mentally disabled. We were not prepared for that. Suddenly I was taking care of a 37-year old man and a 4-year old and a 6-year old, so I was Suddenly Single.

Nobody was taking care of me. Nobody prepared us for him coming out completely disabled.

Immediately after the surgery, he seemed fine. In the days after it started coming out that he’d completely changed. It was very hard for everyone to deal with. He was very much trapped inside his body and unable to do anything to help me and I was feeling helpless not knowing how to help him.

It was a very long time before he was back home again.

There are very few women out there like me to reach out to to talk through it and the few that I found, their partners had fared much better.

I tried everything in the world to try to fix him. I finally hired caregivers which is very hard to have caregivers in your house, especially because all he wanted to do was watch TV. We got him stable and he finally got to the point where he could feed himself again, but he never got back to being able to do the activities of daily living himself. He lost all motivation, which was part of the injury.

Two and a half years of this…I was just a shell of a person. Again, nobody taking care of me. Just me taking care of him and taking care of the kids.

After a while money got very tight. It was really hard.

Despite swearing I’d never divorce him, I decided to move him out. I got him a handicap-accessible apartment nearby. I got my life back. I just needed that separation to focus on me, focus on the kids. I found myself sort of single in a new way, 2.5 years later.

The cancer came back several times. He went through radiation, chemotherapy. Cancer is so awful.

I felt very guilty. I made a point of making sure the kids got over to see him one night a week and on weekends.

I found a boyfriend. I felt like I needed some care as well. I stayed married to him, he had my health insurance that way.

There were times early on when I don’t think I even allowed myself to imagine where life was going to go.

I just kept moving forward and really didn’t allow myself the chance to reflect. I just kept pushing forward.

I made sure I was taking care of myself. I made time for myself and made time for the kids. It was such a difficult decision.

I made a decision that I had to take care of the children, and I couldn’t take care of them if I wasn’t being taken care of myself.

Our old couple friends didn’t involve us in anything after it happened. Nobody knew what to do. I lost a lot of friends and a lot of socializing but I built that back up.

They say it over and over, put your own oxygen mask on first. You can’t take care of others if you don’t take care of yourself and I had so many people to take care of.

As people get older, it’s going to be common for one-half of a couple to be disabled. Be there for the person who is still the able spouse.

The girls and I are super close, tight, and wonderful. We have a 3-way text chat that’s going on all day long every day.

I’m not a caregiver, that’s not my strength.

Get power of attorney for all the loved ones in your life while they’re well. Get your paperwork in order. You just don’t know.

Find ways to laugh. Don’t be too hard on yourself if you find you’re not the caregiver, that’s not a role that you embrace. Decide what your priorities are. You yourself have to be a priority but then decide is it the spouse, is it your children, is it your business.

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