Privacy? You’ve got to be kidding…..

I keep thinking about how this is a topic none of us talk about but everyone has to face 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 that there is no such thing as privacy anymore.  I think that’s one of the most difficult things to get used to in the shift of our personal dynamic 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 need to go with me everywhere stopped.  They became too embarrassed themselves to invade my privacy.

It’s different when you start losing your privacy when you’re 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 were 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 really 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 over come 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 for us 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 in the van to have privacy.  I admit though I see some strange looks at times when I catch sight of people looking in the window as they pass by!

Lynn’s really a good sport about 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 or cath him or shower him that 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 when it comes to privacy.  I want my space and I want 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 at times that he can’t follow me when he’s hooked up to his peddlar or in bed because I know that even if he’s calling for me, he will just have to wait. So the bathroom is still my one 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 of us of live with it everyday, it’s a reality that takes some getting used to.

Hope I haven’t offended anyone.

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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2 Responses to Privacy? You’ve got to be kidding…..

  1. Donna, Lynn, you are both amazing -I miss you both and hope we can get together soon

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