I posted on another post that yesterday was the first visit of an aide for DH. It went very well. Today I received an email from the director about the aides observation from her 1st 4 hour visit. She said that DH could comprehend, but became frustrated when trying to communicate. I may be overly sensative from people telling me how good DH seems and that it seems like he is not bad. But maybe I do not know the correct meaning of "comprehend". He cannot comprehend "sit down and eat", "just leave it there" etc.... He cannot take simple directions. I am not happy that she made that assumption from one visit. I am going to talk to them. They are not here to evaluate DH but help with him. The director said that "there seems to be little or no damage to that part of the brain that comprehends". How does he know this. If they have dealt with AD patients for years they know they have good days an bad days.
Like I said I may be overly sensative. But if he can comprehend, then He can see how he hurts me with the things he says and does.
jackiem29, IMHO, I would let it go. She will figure it out soon enough. Be glad that her comments were positive and that she is coming back.
We walk a fine line with aides, agencies, and LTC facilities: you have to keep the staff on your side, get to know them, be personable, but keep a sharp eye out for the big problems like toileting often enough, being patient, and using dementia techniques. Most aides do not have a lot of training so if yours has an easygoing natural knack for handling your husband that is a huge plus.
You are right, the director should not make evaluation statements to you. She does, however, need to have a handle on the state of the patient so her aides can be advised as to what to expect and so she sends the right aide for the job.
You can approach this from the back door and say to the aide the next time she comes, "It is hard sometimes to evaluate these patients the first time around, and I think that you will find that while he seems to be comprehending, his comprehension is rather poor. Let's give it a few more days and see what you think then."
Jackie, perhaps you should speak with the director and the aide to find out what they are actually saying and have them give you examples as to why they say he can "comprehend".
I'll give you an example: my husband can follow directions very well. I can ask him to come to the dinner table, sit down and eat his food. after I ask him to do the sequence of events, he can execute it without me having to repeat any of the steps. Is that comprehension? I don't think so, but he can follow simple, multiple commands without a problem. Yet he can't communicate what he needs or have even the shortest conversation. One of his geri-psychs told me that was evidence he did NOT have AD, because someone with AD would forget the first command and not be able to execute.
And no, he cannot see how much he hurts you with what he says and does...it's entirely different. One is following commands, the other involves insight, empathy and feelings which they lose early in the disease. And in many cases (surely ours) the person with dementia takes out his/her frustrations on the caregiver. I always say I am the person he loves to hate. But let's be realistic...I am the one who sets boundaries, won't allow activities that might hurt him in some way, supervises the aides and tell them what I don't want them to do. They have a whole different perspective than you do as a spouse...they can leave after 4 hours so there's no benefit to them and the relationship to say "no". They try to make it is non-confrontational as possible while they are there. As my sister tells me "You're the jailer","I'm the fun one who never says no or has a harsh word or command". And guess what, he behaves so much better with her than me.
I know it's hard but if he's compliant with the aides, then that's a very good sign.
LFL and Marche I know you are right. My daughter even told me the same thing. He did accept her and enjoy the visit. I will take that as a wonderful thing. She will see more as she is here. My DH would not be able to follow what your husband did. He cannot even process a simple instruction as brush your teeth. I think that he knows what it means but doesn't know to get toothbrush and paste out of drawer. And if it is on the counter the steps to put the toothpaste on the brush. So I guess he can comprehend brush your teeth, just not able to complete steps to do it. So I guess thinking it through I can see it. Thank you.
Jackie, I didn't say he could follow the steps to brush his teeth...he can't even brush his teeth and won't let anyone do that for him. That's a whole different realm...personal care and he's combative when it comes to ANY personal care. Now food, it's all about him! :>)
Don't worry, it'll be fine.
I know you know this but if she can get him to do things you cannot, embrace that! one less thing for you to stress over.
i would also say that's wonderful that they have observed that hes more comprehensive while under their care. they will come to see soon enough how off that remark may be. remember they want to also try to be positive in their updates. it wouldn't make them or aide look good if they report non functional incidentals i think. i would let it go too and sit back and wait for the reports that follow/
I echo what Charlotte said. I find that my DH seems to try extra hard to "appear" normal around people who are practically strangers, but lets his guard down around people he knows better - friends and family, neighbors who from time to time sit with him.
I do not think it was appropriate for the director of the agency to comment on your LO's ability to "comprehend", particularly since the reason the aide is there is to give you respite, not to evaluate your DH on his abilities or lack thereof. I could understand the director giving you a report if the aide had run into difficulties or your LO had been combative as this would probably result in a reassessment of your DH.
I have an aide come once every other week for 5 hours. She sits with my DH but is not required to do anything else. I usually ask her when I get home what they did (go for a walk, did he have lunch, did he have a nap?) but that is so I know what his likely behavior will be in the evening.
It is important that you get the respite time, for your own sanity. So I am glad that the first experience went well. I hope for your sake that it continues.
I suggest you separate what the aide (supposedly) said to her boss and what her boss said to you. You don't know the context of what the aide said to the director - it could simply have been a response to a question from him (e.g. "Could he understand you?", "Yes. He seemed to.")
On the other hand, you do know what the director said to you ("There seems to be little or no damage to that part of the brain that comprehends.") You’re absolutely right – the director could not possibly know this. In fact, his statement is ridiculous. Given the sorry state of the medical profession's understanding of this disease, even a neurologist or a cognitive psychologist could not say this with certainty.
I think the director was just trying to impress you. Hopefully, he'll stop offering his unfounded opinions. But if he continues to act like a pompous ass, you can deal with him later.
In the meantime, I would not blame the aide for what the director said. If the aide is doing what you hired her to do, this seems to be going well.
Jackie, As I said before, we have lots of experience with these agencies. They use these check sheets and reports as means of "back up" documentation if any insurance issues arise. They are no means experts in any sense of the word. The director is mearing trying to cover his backside if something happens on his watch that would make his company be liable.