I keep thinking about how this is a topic none of us talk about, but everyone has to face it at some point, so I decided to write about it. Warning: It may seem insensitive to some, but in reality, it’s one of the elephants in the room we don’t talk about.
If you are a caregiver (or the one receiving the care), you know there is no such thing as privacy anymore. I think that’s one of the most difficult things to get used to in shifting our personal dynamics with each other. It was one thing when I was a young Mom, and my children followed me everywhere, but once they got to a certain age, that needed to go with me everywhere stopped. They became too embarrassed to invade my privacy.
It’s different when you start losing your privacy as an adult. I’m 54. I was raised to be very modest. I have never liked going to the bathroom with anyone else around. I never liked showering in gym class. If I wanted to take care of personal hygiene, I wanted it done behind closed doors…alone. Furthermore, I wanted those same lines of separation with my spouse to a large extent. I was never one who felt comfortable with too much sharing of personal space or private moments. There were just some areas of our relationship I preferred to keep separate.
Once Lynn became disabled, that, of course, had to change. He has NO privacy at all. He had to let go of his dignity completely as his ability to use his hands or balance himself was no longer in his control. At first, it was a little awkward, but, like with most things, you both get used to it after a while…especially if you can laugh about it. We have been in some very awkward situations that could have been humiliating and extremely embarrassing for both of us, but instead, when I started feeling that uncomfortable tension mounting, I took a look at the situation we were in, and I started to laugh. Then he started to laugh, and before long, we were both nearly hysterical laughing. It has gotten us through some difficult moments. Thank goodness he has a good sense of humor, or my laughing might not have gone over as well.
Another challenge we have had to overcome is public restrooms. I never realized before how difficult it is for the disabled in public areas. Most places have a “his” or “hers” bathroom. Of course, when we go out, that’s a problem because he can’t go into the “hers,” and I don’t want to go into the “his.” So what do we do? We go to the van and take care of the catheterization using the tinted windows for privacy. I admit, though, I see some strange looks when I see people looking in the window as they pass by!
Lynn’s a good sport in those situations, but I’ve found that I’m not there yet when I need a private moment. You would think that as often as I have to take him to the bathroom, cath him, or shower him, I would have no problem when I need to go myself when he’s around, but honestly, I still want my privacy! I resent not being able to go to the bathroom without hearing my name called for help or him waiting expectantly for me in the public restroom while I relieve myself. That’s just a little too much closeness for me.
So, I guess what I’m saying is I want a double standard regarding privacy. I want my space and my own time to have my space without being urged to hurry up. I want to be able to lock my door, take as long as I want, and do what I want to do in private. I admit I’m actually glad that he can’t follow me when he’s hooked up to his peddler or in bed because I know that even if he’s calling for me, he will have to wait. So, the bathroom is still my private domain (at least at our house). I might have to repeatedly say, “wait a minute,” but I can still have my privacy to some extent.
I’m sorry that he can’t, though. It’s just one more loss that most people don’t even think about, but for those who live with it daily, it’s a reality that takes some getting used to.
Hope I haven’t offended anyone.
