Can I Have My Brother, Please? Please?
Feb 20 2011 in Trish's Blog by Trish
New Home is starting to really get on my bad side. That’s not a good side to be on (just ask my hubby!) .
We got through the medication issues and New Home seems to be giving Robert his medicine when he’s supposed to have it. I haven’t seen the extreme seizure activity that he had and that’s the best way of confirming what they’re telling me.
I also think I have finally convinced them to change his bed everyday and to make sure he puts his wet pajamas in the laundry and not back in the drawer. I thought I was doing them a favor by telling them BEFORE HE MOVED IN that he is incontinent and wets through his “brief” Every. Single. Night. I explained BEFORE HE MOVED IN that he tends to think since wet (um, urine soaked) clothes will dry by the next time he needs them, they don’t need to be washed. I didn’t tell just one person this information, I covered my bases and told the Regional Center counselor, the Director of the residential care program, the house manager of Robert’s New House and a couple of aides.
A few times when I visited, his bed was wet. I changed his bed and changed the pads. I put an extra mattress protector cover on his bed. I checked his drawers and pulled out the wet and/or smelly pajamas. One weekend morning I was visiting and an Aide was ready to do Robert’s laundry. I pulled all the pajamas out of the drawer and put them in the laundry basket and explained that Robert puts wet clothes back in his drawer. The Aide told me that was good information to know.
Yes, yes it is. Gee, I really should have told someone about this habit of his.
A few days later, I get a phone call telling me that they’re trying to track down the source of urine smell in Robert’s room. Hmmm . . . I don’t know. . . maybe CHECK THE FREAKING DRAWER???
I think they’ve caught on to the wet sheets and pajamas now.
My latest beef (and, really, I am not that difficult to please) . . . okay, I’ll wait for my hubby to stop laughing . . . Anyway, my latest beef is that it is so difficult to pick Robert up and take him out of the home for a few hours. Last weekend, I called New Home in the morning and told both Robert and an Aide that Robert would be leaving after lunch and would be having dinner out but would be back before bedtime. I came by after lunch to pick up Robert and I picked up the necessary medications. I returned Robert just before bedtime (it was later than I had expected but this was the day Rob had all that seizure activity so I wanted to keep an eye on him as long as possible).
A few days later the House Manager told me that I need to notify her when I take Robert out of the house. Well, okay, but I did tell someone that I was taking him (and even if I hadn’t, I’m pretty sure someone would notice us walking out the door – the boy doesn’t walk that fast). “You need to tell me.” I need to call you when you are not at the house if I want to take Robert out of the house? “Yes. But it’s no problem to take him. You just have to tell me first. But it’s not a problem.”
Okay. I can follow rules. Tell me the rules and I’ll be happy to follow them (well, they have to be reasonable, of course).
Yesterday, I called to tell Robert that I would take him out for a couple of hours. He wasn’t going to miss a meal at New Home but I wanted to get him out for a while. He hasn’t started a day program yet and he’s bored. It’s not good for him to sit all day long watching television. He needs to do something. I called the House Manager and left her a message on her cell phone. I called New House and told an Aide my plans for the afternoon. “You’re taking Robert out? Um . . .you can’t do that.”
I can’t have my brother? Really?
Breathe. Breathe. Breathe.
My patience was definitely wearing thin but I like this Aide and I could tell she was just “following orders.”
I explained that I had already called the House Manager and left her a message. She audibly sighed with relief but said she would have to call her, too. And someone else (the co-House Manager?) That’s fine, call whoever you need to but I’ll be there in 30 minutes and we will be going out for a few hours.
Goodness, I think I would have had an easier time getting a few hours with Charles Manson.
I arrived and was “allowed” to take Robert out. We left and went shopping for slipper socks (he’s missing one – not one pair – and it’s driving him crazy) and we got his new watch fitted properly. He enjoyed himself and I brought him back to New House in one piece.
We obviously have a few bugs to work out still . . .

Karen said on February 20, 2011
Wow, Trish! I think I would have gone ballistic! Heck, I know I would have. I would be going over the head of the house manager. Just reading this makes me want to go and slap somebody. I know, I know. That’s doesn’t get results. A little righteous wrath usually does, though.
I will never understand why there are those in the “caregiving” professions forget the “care” part of their job.
I hope that you, and Robert, have better experiences ahead of you.
Kathy said on February 20, 2011
Trish,
I have all the faith in the world that you will get the new house whipped into shape and all the bugs squashed.
big whip, fly swat, hard shoe, bug spray or exTERMINATOR. What ever it takes.
I’m cheering you on!
How does Robert like his new home?
Denise said on February 21, 2011
Ooooohhhh, how frustrating. This kinda sounds like a manager trying to stake out her territory and make sure everyone knows who’s in charge. Sigh. So exhausting! Hang in there. Keep us posted. You’re doing all the right things!!
Jo said on February 21, 2011
Trish, they obviously don’t know who they are messin’ with
I admire your persistence AND your patience.
Bette said on February 21, 2011
Hi Trish,
I’m so sorry–this is so frustrating!
Between our experiences with Assisted Living, Hospitals and Rehabs. the common need is always “Communication”. Sometimes I wish they had one designated person (department) to serve as a runner for all the various departments.
It sounds as though you are helping them along with that issue. (: Good for you!!
Keep up the good work!
Trish said on February 21, 2011
Thanks everyone for cheering me on! I agree that communication is key but it’s like solving a puzzle trying to find out who the best person to talk with is. I have found from Robert’s Old Home that it’s the people that work with him each day that benefit from knowing his habits. Telling the director didn’t do me any good but telling the sweet laundry lady worked like a charm. After some hiccups, he was dry and his clothes were clean! With the New Home, they don’t seem to have a consistent schedule for the aides so it’s difficult to “connect” with them. Plus, the director is not flexible in the least which is not helping.
Robert tells me he likes it but he’s awful at self-reporting. I know he’s bored and I keep finding out little things (like yesterday he told me he was watching church on television and they made him stop because he “had” to eat breakfast right then. I checked with another aide and she said breakfast on the weekend is supposed to be flexible.) Interfering with a disabled person’s ability to worship is a big no no and the home can get in huge trouble for that. I’m fairly certain they will correct this as soon as I bring it to their attention but it’s all these little things that are adding up to a huge headache.
I am at the point where my husband and I are looking at how we can convert our garage into a room for Robert (our home is a 2 story and we have no bedrooms or showers downstairs and he can’t walk up stairs) and when the regional center opens again tomorrow, I’m going to find out what resources they have available for home care.
Sorry this response is so long but I am really frustrated. Thanks to each of you for listening.
G-J said on February 21, 2011
I don’t blame you for being frustrated! What a ridiculous situation. You’d think they’d be happy when someone takes their family member out for a while. Their behavior makes you wonder if they are afraid of you keeping too close an eye on your brother’s living situation. How frustrating that they seem to be working against, rather than with you.
Trish said on February 21, 2011
G-J, They really don’t know what to do with a family member visiting. It’s sad but on the sign in sheet, only one of the other residents has visitors and that’s every other month or so. They better get used to it, though, because I’m not going to stay away (no matter how difficult they make it). Thanks for the insight of why they may not want me over there — I’ll keep that in mind as I work to straighten this out.
G-J said on February 21, 2011
I used to visit my Dad anywhere from twice a week when he was really healthy and didn’t want me around any more than that to twice a day when he wasn’t doing as well. Steve, our son, and I attended every monthly family event they had as well. I felt badly for the people who never had a visitor and never had a family member come to the monthly events, including the Thanksgiving and Christmas meals.
My Dad was in a larger facility but I also made it a point to get to know the medical staff very well, as you are doing with the aides. There were four different administrators in the 20 months my Dad was there, so they were never much help.
Hang in there!
Unit Known as Shandi said on February 22, 2011
Boy, can I relate to this post. Our two week experience at the nursing home in January was also full of issues. I’d try to be proactive and communicate Mom’s needs ahead of time, just to find out that they were brushed off. The nursing home was very caring, but I sure got tired of feeling like a not-so-nice person when I had to repeat myself so much. I guess it continues here at home, though. I had to call a supervisor today at the home health agency and tell her not to send the physical therapist back. The one we used to work with was wonderful. The new one, not so much. I’m actually considering dismissing the home health service and taking Mom in for therapy so that I can meet Mom’s needs and not feel like Mom is having to jump through the agency hoops.