Wednesday, March 30, 2011

Did I Say That Out Loud?

I would love to only write about Robert’s good side and how sweet and polite he is and how he ends every conversation with “God Bless You.” The fact is he gets pretty cranky and stubborn and angry at times.

Wait a minute . . . sounds like me on a bad day. (shhh! Don’t tell my hubby I admitted that!).  :-) 

Today I received a call from Day Program telling me Robert had an “accident” and since they didn’t finish the sentence with “and we called 911” I knew they meant he had wet through his protective brief. The only reason I was called was they couldn’t find his bag with the spare clothes and briefs I had left on his first day. Eventually, they found them and Robert was back to being dry. It didn’t come without a struggle, however.

New House Manager (who isn’t so new anymore but is still fabulous) called five minutes after I hung up with Day Program. See what I mean about fabulous? She communicates!!

“Sorry to call you at work, Trish.”

That’s okay. Call me anytime. What’s going on?

“I need your help with Robert. He wasn’t cooperating with Day Program about changing his clothes but he finally did. He’s also been yelling at the House staff and not letting them help him out when he’s messy in the bathroom.”

Ugh. When Robert is “messy” in the bathroom this isn’t just a matter of him wetting his protective brief. This is Robert trying to wipe himself (and his brief) after you-know-what with one square of toilet paper. I didn’t say roll. One square. There are times to be thrifty but this isn’t it (nor is it when shopping for shoes. Just for the record.).

I’ve been with Robert when this happens and usually have to shower him to get him completely cleaned up and germ free. I pull on disposable gloves, imagine myself walking on a sunny beach and ignore any unpleasant odors trying to make their way into my brain. This is a nasty job and what makes it worse is having to convince a stubborn Robert that he needs a shower or at least needs to be wiped clean with a lot of wet wipes. Robert is resistant with me but eventually relents. I think being the older sister has some clout (although Other Brother seems to have more clout with Robert than even I do!).

With the New House staff, Robert gets mad and refuses to accept their help. He has started to yell at them and call them names. I’m pretty sure the conversation goes something like this:

“Robert, let me help get you cleaned up.”

“I don’t need help.”

“Robert, you do need some help. Let’s get you in the shower.”


“Robert, I’m going to leave to let you calm down.”

“Okay. God Bless You.”

Now, I’m no religious expert but I’m pretty sure “Stupid Head” and “God Bless You” shouldn’t be in the same conversation.

New House Manager is calling me for help because she knows Robert will listen to me. Usually. Unfortunately, I had to work late tonight and won’t be able to see him until tomorrow but I will talk to him. I will have to put my “mean mom” hat on and be very stern and tell him he can’t yell at the people trying to help him and he needs to let them help him get clean and germ free.

He will probably tell me that he didn’t say those things; he only thought them. Well, hon, people can hear you thinking.

I do suspect he’s embarrassed about the accidents which is why he acts out. His impulse control is worse than my teenage son’s so there isn’t a permanent fix to the yelling problem (that I’ve figured out anyway). I’m sure once I talk to Robert, the situation will get better in the short term but then Robert will need another reminder in a month or two. Hopefully, New House and Day Program can understand this and not threaten to evict him.

If my talks don’t work, I may have to pull out the big guns and have Other Brother talk to him!


Heidi Alberti & Atticus Uncensored said...

Trish, you truly are an angel! Robert is so fortunate to have your love and care.

I really appreciate the way you present your world -- humor plus reality is a nice combination.

My warmest thoughts are with you & your brother

Heidi & Atticus
"commentary to give you paws..."

Susan Higgins said...

I'm new to your blog... I am a care giver for my 81+ year old mom with Lewy Bodies Dementia - it's not easy.

My mom goes to a day program too... sometime she gets like Robert and lashes out. She gets mad because she can't do things for herself anymore, like wipe herself after going to the toilet.

But... the day program my mom goes to is phenomenal. I love how they are with my mom, she has fun going to "work" and seeing her new friends. The program is helping me to keep my mom out of a nursing home for as long as possible.

God bless you big sister!

Trish Hughes Kreis said...

Welcome, Susan! Even though I wouldn't wish these things on others, it's nice to know we're not alone. :-) It must make you so relieved to have such a great day program for your mom. You are a sweetheart for taking care of her. I found a wonderful site ( that is very supportive and includes a few people who are dealing with Lewy Body in their loved ones. If you haven't found it yet, check it out. Thank you for reading and I look forward to hearing from you again.

Trish Hughes Kreis said...

Hi, Heidi! I try to keep my sense of humor even when I'm frustrated (admittedly, sometimes more successfully than others). It's definitely needed in these situations! :-)