Every week, Jill responds to caregivers reaching out for help. I like this one:
I can relate to your post. My husband survived a massive stroke at 51 (carotid artery dissections). He lost the use of the right side of his body, his ability to think clearly, speak, and his memory. The man I brought home from the hospital was completely different from the man I married. He was essentially a child again. He threw tantrums, he lied, he cursed, he said things he would never have said in his right mind. It was terrifying for me and for our kids. He was unpredictable, impulsive, and very unclear about what was normal and what was not.
Here’s the good news: things got better. We are now 10 years post-stroke and although he will always be disabled, he is much more the person he was before the stroke. He walks, mostly talks, remembers well, and mostly behaves like the man he was. I give him 80% back to his original personality.
Here’s the more difficult news: It took about 2 years to stop acting like a child. Over about 5 years, the crazy mood swings gradually lessened and slowly he became an adult again. Even now, he struggles with making sense of the world around him.
Early on, I heard stories of marriages destroyed by stroke–the relationship became caregiver/survivor, no longer husband/wife. I refused to let that happen. I had to consciously treat him as my husband and partner in life but take care of him like a caregiver. There were many times when I had to discipline him like a child but always with respect for my husband. I had to include him in decisions and let him take on responsibilities when he thought he was ready, even if I didn’t believe it. I couldn’t hover over him checking everything he did and minimize his effort or make him feel useless. Even 10 years later, I have to think very carefully before I intervene in his efforts and sometimes just have to wait for him to ask for help. I walk a fine line between wife, caregiver, and partner.
I wrote a book about the experience. You might find it helpful. Painful Blessing by Jill Viggiano (on Amazon). Take heart. Our life was changed forever but with work, patience, and love, our life is good–different but good. Your husband has a terrible brain injury. He isn’t being awful on purpose. Work toward recovery but remember that recovery happens in teeny tiny steps. Good luck and God bless.
Jill wrote this note. I consider myself blessed by having such a wonderful person in my life. If I had to care for her, I don’t think I would still be there for my bride! That is terrible to say…but I don’t honestly think I would have been there for my bride of 28 years. Each day, I am more amazed that Jill stood by me…. even in those early days!