Hi,
I am hoping to get some input on telling your loved one he or she has LBD vs. not telling them. My mother does not know she has LBD and my father really doesnt want to tell her. My sister & I feel she should know. She cant understand why caregivers are around all the time and is on the war path to make sure they are gone for good. The caregivers help my father cope with the situation (he's 86 & frail) and make sure she bathes, exercises, gets her meds, and eats properly.I feel that if she knew what was wrong with her she may accept having the caregivers around.Her neurologist has agreed to go with whatever my fathers wishes are, but it has gotten so bad my father is considering having her neurologist tell her. If anybody can share their own experiences with this it would be greatly appreciated.
Thanks,
John

Hi there,

My two cents: I think you should follow your father's path on this issue.

Even if your mother knows she has LBD, she may not understand why hired caregivers are needed.

This topic has come up several times in the past on the Forum. You might look over the first page of posts in some of the Forum areas to find previous instances of this question. Here's one example:
http://community.lbda.org/forum/viewtopic.php?t=1848

Robin

It is my understanding that a patient has the legal right to know his/her diagnosis and prognosis whether or not he/she can fully comprehend it. Certainly, her neurologist is the best choice for giving her the news.

I well remember when my father's melanoma was determined to be terminal, my mother didn't want the oncologist to tell him but he said he had an obligation to do so in order to give him time to get his affairs in order, etc. If your mother can understand that she has a progressive disease of the brain that is treatable and that is not a 'mental illness', it might actually help her come to terms with some of her own perceptions. Just my humble opinion, of course. God bless you.

Hi Johnie - interesting timing for your question. I've avoided using "the D word" with my dad, although at several drs. appts. in the past year the various drs. have used it. My dad always had a blank look on his face and never brought the subject up. I figured he was so traumatized just thinking about having dementia that I'd avoid the topic unless he brought it up. So, yesterday he asked me "why am I having to eat with all those old ladies who have dementia? I don't have dementia, but I did see in my medical chart a few days ago that I've been diagnosed with dementia? I don't think I have it, but do I have it?"
So, I said "yes, you do have some form of dementia and I am trying to work with your drs. to find some meds to help control the symptoms." He asked who had given him that diagnosis. I didn't remind him that his GP had been telling him for 3 years he suspected dementia, because he's been furious with him for a year or more. He likes his neuro, so I said "Dr. X, your neuro diagnosed it." He said "well, this is the first I've ever heard that. Why do they think I have dementia?" I tried to explain a few observations I'd just made, without getting him upset because he was already very angry most of the afternoon.
When he asked me why the drs. made so many guesses at diagnoses and nothing definitive I reminded him that he's been refusing any more tests for over a year. He said "that's right, no more tests" and that was the end of the discussion.
Since he doesn't know that many of his thoughts are delusional, it's really hard to give him a rational explanation and have any expectation that he will understand, but at least it didn't go too badly. He didn't have another temper tantrum until I mentioned something about his bed sore. Then he blew up at me again because he "has NEVER had a bed sore." He's had it for over 7 months. Oh well, you do what you can do.
So here's a question for you (and anyone else) - When my dad keeps asking me "why are all these people in here looking at my butt?" but he gets livid when I mention bed sore, what should I tell him? He asks me almost every time I see him, and then gets furious at me that I am giving him "wrong" information! It is so maddening.
Hope this is helpful, sorry it's so long. Good luck. Lynn

Well, Lynn, the clinical terms are 'pressure sore', 'pressure ulcer' or 'decubitus ulcer'. I guess you could tell him he has a 'pressure area'---or maybe an 'owie'---on his butt.

Thanks for the replies. I believe my Mom knows she has something wrong with her. She's been in Dr.'s offices & LBD has been mentioned. She has a bit of a blank look as well when the Dr. is talking his talk. I guess the rationalization part is what gets in the way with this topic.How well can someone with LBD rationalize? My mom can rationalize some things, but not others.She's convinced there's people living in the attic. When I try to tell her there's no possible way they can get up there, she says 'are you trying to say Im crazy? I know they're up there!I hear them!' As far as telling her I think she would understand if we told her, but the state of depression she may go into could be serious. I would want to know if it was me so I could do whatever is possible to help myself.
Thanks again for everyones input.
~ John

John, I can really relate to the 'people in the attic'. But it does no good to reason with them that it can't be so. What I say to my LO is that, I know that to HIM these people are very real but I am unable to see or hear them. Sometimes I tell him, "Oh, those are your Lewy people but I can't see them".

Pat - I have used the term "pressure sore" and have tried "bed sore" and he ALWAYS gets mad at me and says he doesn't have one. He can't see it, it doesn't hurt, even when it went down to the bone, so he is convinced he doesn't have one. I'm tempted to respond next time he asks why all these women are looking at his butt with "they just like to look at men's butts!"
Even though a home health nurse comes in 3 x a week to dress this wound, he says he hasn't seen a nurse since he moved to the ALF 10 mo. ago. Then there are the resident nurses he sees several times a day.....

I like your answer best!

Well, I'll try saying that next time. If he gets mad at me for being sassy to him I'm going to call you Pat!

No, Lynn, just tell him that all the nurses think he has the cutest butt in the whole facility and they can't help looking at it!

John,
As to the people in the attic, I am sure you will never convince her they really aren't there because her belief that they are is very real to her maybe a better approach would be to tell her you understand she hears them but you can and maybe engage her into a coversation as to how she knows they are , so on and so forth, as to telling your Mom about her LBD, I certainly wouldn't hide it but I would use wording to not cause her concern and more than likely she will never actually remember it as my husband never did! But I certainly would respect my Father's wishes !
Some times this disease is a real balancing act!

Always a balancing act, Irene! When I see my dad in 3 weeks I wonder if he'll remember the discussion about dementia. He asked a lot of questions after I told him that he does have dementia. He is really angling to get out of eating with "those little old ladies who have dementia".

Lynn, when my husband was in the dementia care facility, he firmly believed that ALL of the women residents and staff were men dressed up as women. It was a persistent delusion. And he always referred to them as 'he'.

I looked at a small facility last week--just to think about if it ever becomes necessary to place him--that was just men. Most of the places we've seen are at least 4:1 women to men.

Very interesting Pat. My dad refers to almost all the staff (who are almost exclusivlely female) as "that fellow, that man, that guy, he". Is that like gender capgras or something?
It's amazing you found an all- male facility. Do you think Derek would be better there than a mixed gender one if you need to place him some day?
Lynn