Love and Caregiving, One Day at a Time

Love and Caregiving, One Day at a Time

Hugh and I have been married for 36 years now, and many people who have read my book, Learning by Accident: A Caregiver’s True Story of Fear, Family and Hope, write to me and tell me that it’s an amazing love story. I’m not surprised by this because it takes a lot of love to get through a long-term crisis, and caregiving should come from a place of love. That said, I somehow get the feeling that people think that love is easy for couples who stay together.

Not to smash the fantasy, but our story isn’t all storybook perfect. Our first year of marriage was rocky to say the least. Hugh was a quiet only child and I came from a large, loud family. We had a few things to work out. Hugh was used to a lot of quiet alone time, and I was used to having someone around me all the time, so I was lonely, and sometimes, he felt suffocated. Somehow, we worked it out.

What we always did have was a certain chemistry between us — that strange something that drew us together like magnets, and that’s what I used to think made us so right for each other. But when Hugh sustained a traumatic brain injury in 2002 (after 24 years of marriage) that chemistry vanished. The first time Hugh opened his eyes after his coma, his eyes terrified me. They were vacant, blank-looking eyes. Something had vanished within him. I felt completely disconnected from him.

Over the next several months, we slowly got to know each other again. Little by little, we started laughing at the same time over something we both noticed together, or we looked at each other searchingly, knowing we wanted to find something deep within each other. We explored, touched, experimented, and talked, although talking was the least of it. Eventually, we settled into a kind of partner pattern, one that suited both of us. This is who we are now; this is how we are together. These are our new boundaries. This is our new life, our new love story.

A close friend once asked us, “What’s the secret to a long, happy marriage?” and we smiled in sync. Our answer might not have been the most romantic, but we agreed on what we thought the answer to that puzzle was.

“The secret is wanting to stay married.” That was our answer. It’s that simple. You want to stay married and you want to be together, so you still quarrel, argue, and feel disappointed at times, but you always know that the good outweighs the bad. You know someone is always there for you, someone on your side, someone willing to fight for you. You know this is a person you feel comfortable with, you trust, and you can have fun with, so you put up with life’s little problems (like a traumatic brain injury!) that plague any relationship.

Is this the wisdom of the ages? No. But it’s what we have to offer. Love is not flowers and candy, or wine and expensive gifts, though those things are always nice. It is more like a favorite old blanket worn out from use. It settles into you, wraps around you, and makes you feel safe in a world that is anything but safe.

The love I share with Hugh is richer today than it has ever been because of the hardships we have endured together, because of the hurdles we have jumped so we could reach the other side, because we simply want to be together one more day, every day.

Comments

Hello I'm Joe. I was hit by a train back in 2000 and had a TBI. I don't understand the brain at all, I'm a great thoughtful guy but I can go from Jekyll to Hyde in a heartbeat and I HATE IT!!!!!! Does anyone have any tips to keep my cool easier?
I met my wife 6 years after brain surgery to remove a ruptured AVM. After being married for nearly 12 years and with two kids I find her regularly complaining about me. I struggle with feeling and expressing emotions, and the real challenge is showing love to more than one person at a time (the issues started when we had kids). My wife accuses me of being rude to her and treating her with disrespect and I really don't see it. I believe her when she tells me this (all the time) but I'm not sure what to do. Love takes work but as was said earlier the gifts and trinkets aren't what it's about, and it should just come naturally. Does anyone else struggle with this, and/or have advise for helping me "show" love to her without ignoring my kids and causing a divide there?
Wow! Great story and so true! My husband and I have really struggled at times during the 4 years since his TBI. But we do *want* to stay together so we fight!
Thank you for sharing your story. I am a caregiver who had to help my partner adjust after a stroke. I can well imagine rhe hurdles, fears and victories you both have likely made. It was transformative for our relationship as well. Much good luck to you both.
Nice, Rosemary, I'm glad expensive gestures are not essential!
Love your "secret to a happy marriage" tip: Wanting to stay married!! Very honest, realistic piece on the glue that holds marriage together- commitment.

My husband and I had a wonderful relationship/marriage. That changed when I had a TBI in '07! Instead of being there for me, he began cheating on me and kicked me out of our beautiful home! That was the same night I found out that he had begun cheating on me while I was literally fighting for my life in the hospital! I even know the woman! She was a classmate of ours in high school!

I don't understand how a person can cheat on their significant other when they are fighting for their life and not feel guilty about it! They should put themselves in our shoes, see how it feels, and maybe they wouldn't have done the horrible thing they did!

I thought/ felt I had a wonderful marriage until I had my AVM in '07. That is when my husband of almost ten years turned his back on me and began cheating on me while I was in the hospital literally fighting for my life due to my TBI. I wish others would put themselves in the shoes of TBI survivors and realize just what we go through on a day to day basis!
Hugh married the right woman.Thanks for sharing your story.
My husband and I have been married for 43 years.He is my best friend,and love of my life.He had a TBI in 2008 just before we were going to retire.Your story resonates with me, especially the analogy about the old blanket. Thank you for sharing.

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