Just some thoughts from my perspective.
Background: Been married almost 20 years. For the last 10+, I’m a wife, caregiver to my husband C3 complete quad who also suffered a TBI in the accident that paralyzed him. I’m also mother to our 2 sons who are now in high school.
Our husband/wife intimacy is over. For a variety of reasons, that aspect of our marriage is gone. I’m not interested in recovering it. I live with this new normal which isn’t so new anymore since we have been married longer with paralysis than without.
Besides the obvious, I find mostly I miss being touched. No hugs, no caresses, no holding hands. All those little touches and jesters a wife craves in her marriage. I miss those tremendously. It’s not always just about sex or the lack thereof.
Does my husband miss it or think about it? I’m sure. I caught him reading 50 Shades of Gray off my Kindle account, so I assume he must. We both miss what we had together. However, that part is over by mutual agreement basically.
The other more incredibly sad part for me is seeing how the relationship he had with his sons has vanished. They were in 1st and 2nd grade when he was paralyzed. They are now about to graduate from high school. Although he has lived at home this entire time amongst the family, he has a very superficial relationship with them. He’s missed a lot, and so have they.
Early on, I tried to push the relationship with them. I tried games, school events, and various activities they could all be interested in. I made us all sit around the table and eat together. I tried movie nights, parties, asked him to get involved, asked the kids to involve him. I tried anything and everything I could think of.
But apparently it seemed like I was the only one that wanted to foster this relationship. So after several years of trying, I stopped. Instead, I spend my energy fostering my relationship with my sons.
They have little interaction with their dad now. Since middle school, they stopped having friends over. They talk to him as little as possible. We do have a significant amount of weekly nursing help these days. The boys and I tend to spend much time upstairs in order to avoid the nurses and all that goes on with the care of a C3 quad. We feel crowded out of our privacy, and it is distracting having our family invaded by his caregivers.
Right or wrong, my husband’s focus is primarily on himself. His needs are so great that he really can’t see the needs of others. It’s almost like he is the center of his own world to the exclusion of seeing anyone else in the word. I actually attribute his attitude more to his TBI than paralysis. But the whole thing is a package deal which changed us all.
I mostly hate seeing how his paralysis has destroyed two father/son relationships. I feel hurt that due to these circumstances my sons have grown up in a family dynamic I never wished they would have to experience. They are wonderful, bright young men. I couldn’t be prouder of them and what they have accomplished. They both have bright futures. I just wish their dad had been part of it all.