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 Private Parts 
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Private Parts
I wasn't sure exactly where to post this issue. My husband does not always know where his penis is. I finally got him to sit on the toilet--I thought this would solve the spray issues--yeah, rrrright. I tried telling him to put his hand on it to direct it, but he has no idea where it is. So, I place his hand on it and remind him to keep it there. Initially, this was embarrassing to him but we've worked through that. In conjunction with that problem, he has trouble sitting. We installed a higher toilet and grab bars but he has that hesitation syndrome and I have to talk him through that. Many folks have offered to stay with him or take him out for a while, but he is still so aware of the bathroom situation he is uncomfortable. Due to his relatively young age, the unknown length of this crazy illness, and the expense of professionals I hate to start that too soon. Any thoughts?

Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC

Mon Apr 25, 2011 11:13 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Private Parts
I think now might be a good time to start with a urinal, we installed a safety bar directly across from the tiolet and he could grab that for stability and use the urinal, it sure saved a lot of clean up as in was in the earlier days and yes many days he needed help even with that but again it was well worth it to help him !

Irene Selak

Mon Apr 25, 2011 12:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Private Parts
This is the first time I've ever heard of not knowing where one's penis is. Curious that he knows enough to be embarrassed about the situation.

This is very similar to a symptom called "alien limb" in a similar neurodegenerative disorder. The person looks at his/her limb and doesn't recognize it as his/her own. With alien limb, there's nothing you can do to convince the person this is his/her limb. So, it may be that your husband will never "learn" (re-learn) where his penis is.

I think your idea of having your husband seated to urinate is a good one. If he needs to go to the bathroom while out in public and there's no family bathroom, I'd suggest taking him into the ladies restroom with you.

Mon Apr 25, 2011 12:13 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Private Parts
Kathy, Frank is the same with his toileting. As Irene suggested, we use a urinal, it is much easier than talking him to the sitting position. BUT, when I ask if he has to pee or have a BM, he says "I don't know", sitting lets him do either. I do tell him to push the "guy" down, but I usually have to do it, or mop up because it sprays over or between the seat. Leone was saying Dale had a problem sitting, most of the time Frank does too, if I try to push his shoulders done he resists and walks away. Sometimes I think it would be easier to have him wear depends and just pee in them. :x


Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Mon Apr 25, 2011 3:26 pm

Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Private Parts
Oh Gerry, you explained it so well. Thanks everyone for your replies. I thought about the urinal but was afraid to add an additional procedure. Every time Tom has to go, he acts like he's never seen our bathroom before. If he thinks he has to do a BM, I have to explain it's ALL done in the same way in the same place. Obviously, I don't want to do anything to mix him up on that! He already wears depends (his choice), even tho he's only had a few "accidents." You're right, one was during the night and it took 5 mins. to change him, instead of the usual 20. And do those mins ever add up!! Especially, when you add in the "false alarms/dry runs." That said, I may try the urinal. Wish me luck ...

Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC

Tue Apr 26, 2011 9:24 am
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