This is not my life. At least that is what I sometimes tell myself. It started when my husband experienced a stroke. Immediately in the hospital they documented the neurological damage.
Over the next few days. he was getting better. The doctors caught a high blood pressure problem that was unchecked and most likely contributed to the stroke. We walked out of the hospital on day three with orders for a slew of tests and rehabilitation treatment for his balance.
We jumped right into his treatment plan. Vestibular rehabilitation, neurologists, MRIs, PET scans, CT scans, sleep studies, and eventually neuropsychological testing. Everything pointed in the same direction: primarily frontal lobe damage leading to cognitive impairment, short-term memory loss and vestibular interruption. Honestly, I didn’t know what any of that really meant.
What it meant was life as we lived it every day had suddenly changed. Life as we planned it for our future began to slip away. I had to become a caregiver. As much as I tried to embrace the role, my mind kept saying, “This isn’t the way this works. He takes care of all of us. He is the nurturing one. He is the organized one. He is the one who keeps things functioning. I’m just the one who makes money and participates in family life when I can.” Those thoughts were quickly followed up with, “What kind of horrible person thinks these things? He didn’t do this to you.”
My husband tried so hard, but the truth was, he just couldn’t keep up. Our children are 16, 13 and 11. He had trouble with conversations, keeping track of dates, times, teachers, activities, grocery shopping, running errands, and even things like time would slip away – so there goes dinner being ready most nights. One night I got home from work and was met at the door with by three kids telling me the water didn’t work. How does that happen? I didn’t even know where to look for a water bill or when the last time it was paid. Suddenly I had to figure all of it out. Do you know what happens when someone loses their ability to organize and their short-term memory is gone? It means you could find mail (bills) anywhere in your house, bills might not get paid, milk and groceries could be left in the garage, or you might get a call from school when a child wasn’t picked up on time.
“I can do this. I need to do better. Keep going and it will all be OK,” I kept telling myself. I kept pushing, and I pushed and I pushed. I did everything I could to keep up so my husband could focus on his rehabilitation. I was exhausted. Then one day at a doctor’s appointment, it was suggested my husband see a psychiatrist. What? I couldn’t believe it. Why? He isn’t crazy. I’m doing everything so he can get better. Why a psychiatrist?
It got worse. The psychiatrist prescribed anti-depressants. I was more bothered by the psychiatrist and the new medication than I was about anything else. But why? Why isn’t my husband happy? I’m working so hard at doing everything and being happy around him. How could this be? He’s on the road to getting better. Even more insulting, the psychiatrist recommended I see a therapist. I didn’t have time for a therapist, I was busy and I was fine. But I went anyway.
A year later, things are drastically different. We had some very close calls and times when I wasn’t sure we would make it. Here is what I have learned a year later.
- This was happening to us. Just as I was struggling with my new role in our relationship, so was my husband. Even worse, he was struggling with his role in life. Eventually we talked about him feeling “his shelf life was over,” he wasn’t needed, and he had nothing to offer our family.
- His diagnosis of depression was not something to be ashamed of. It wasn’t a failure on my part or him feeling sorry for himself. It is a normal reaction to what was happening. However, when the brain stays depressed too long, it becomes difficult to function. Eventually he admitted that suicide had crossed his mind. That psychiatrist that I didn’t want him to see probably saved his life.
- The more I tried to do everything for everyone, the more resentful I was feeling. The more I pretended I was fine, the worse my internal stress became. Internal stress will slowly kill you. I learned my anger and frustration was normal as well. The therapist I didn’t want to see probably saved me from a stroke of my own.
- I was avoiding the real emotions I was feeling. I was terrified of being left alone without him. What if he died? What if he lost his memory of me altogether? What if we couldn’t have our long conversations about the world and our hopes and dreams? He had similar fears. What if I left him? What if I hated him for doing this to our family? What if he put our family in financial trouble? Putting our fears into words and telling someone about them helped us manage them. Now we are able to be much more honest about how we are feeling about our transforming roles in our family. Mental health treatment became our light in the darkness, and it saved our marriage.