View unanswered posts | View active topics It is currently Thu Aug 28, 2014 9:27 pm



Reply to topic  [ 23 posts ]  Go to page 1, 2  Next
 How to explain LBD to LO 
Author Message

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post How to explain LBD to LO
This is my first post. My question is how much to explain to my mother about her LBD. She was diagnosed 2/2010 (neuro workup at a large teaching hospital) but now that I am LBD-educated (!!) I see that her symptoms started 6-8 years ago. She has some awareness that her memory is failing badly, but less awareness of her confusion. She is bright but has largely been in denial since her diagnosis. When it comes up, I try to explain that her disease is progressing. But don't know if I should expressly say that she has dementia, let alone what its course will be. (One time, she said, "Thank goodness I don't have something awful like cancer or Alzheimer's." That time I did say she has is a form of dementia but I don't know if she understood.) My gut reaction is that she wouldn't want to know how it will progress. Now, I just answer her questions but don't elaborate too much. Is that the best way to handle this? I don't want to make things any harder on her than they already are.


Thu Sep 16, 2010 2:30 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
Post Re: How to explain LBD to LO
Hi Julianne and welcome! I was in the same place you are now, this time last year. I didn't want to mention the "d word" to my dad because I thought he'd get even more depressed and angry, so I avoided it. It is a very individual thing, but I just waited until he asked to say anything. I figured if he really wants to know what is happening, he'll ask. So, eventually when he started saying "what's wrong with me? Why am I like this? Why aren't my legs working" I responded with something like "you have some things happening in your brain that aren't letting signals get through properly. I'm working with your doctors to see if there are some medications that can help you with your symptoms."
My dad was a very bright man, and spent his life working with disabled people, so he used to know a lot about various diseases and conditions. But, the dementia has clouded much of that, so I only answer what I have to. I don't want to lie to him, so when he asked a few months ago "Do I have dementia?" I did say yes, you do. He asked me how I knew and I said because various drs. have said he does and some of his behavior says he does. He asked me what those behaviors were. I gave him a few simple examples like his inability to understand time, that he'd forgotten his grandson's birthdays last year, that he couldn't remember that he'd just had breakfast. I did reiterate that I was working very hard to make sure his drs. did everything they could to make him comfortable, so he didn't lose hope. He asked me what type of dementia he has, and I told him probably LBD, but we didn't know because he refused any more tests. He said "that's right, no more tests" and I said OK.
This is really difficult to have a conversation about, but just go slowly, gently and like with little kids, only give them a little information and if they want more, they'll ask. For my dad, a lot of info. at once would have made him very upset and I didn't want to do that.
Good luck and let us know how your conversation goes. You will probably have something helpful to pass on to another CG. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 16, 2010 2:58 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How to explain LBD to LO
My husband [i]hates[i] the 'd' word. I usually explain that his disease prevents some brain signals from getting through to his body and to other parts of his brain. Somehow, he can accept this, since it sounds more like an electronic transmission problem than a mental deficiency problem.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Sep 16, 2010 2:59 pm
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: How to explain LBD to LO
I think it depends on your mother. Is she practical or does she try to avoid unpleasant things? Have you had an open relationship or are there things you've hidden from each other?
If you received a diagnosis from a teaching hospital, the doctor should be involved in the discussion. We may all be "experts" but our parents might take the doctor's word and description better than they take the news from us. My Mom's doctor delivered the diagnosis in our family meeting (after the tests). Mom was there, though they did give us a choice in this. But my Mom is the very practical, pragmatic sort. At our next appointment at the Memory Clinic, Mom said to me "I forgot I had dementia!" That is one of the blessings (?) of memory loss. The patient usually forgets unpleasant news like this. But it has made it easier to say to her that "it's your illness that is doing that to you and it's not your fault." But then again, Mom went through dementia with both of her parents. She, in her best moments, knows what is happening and why. Those are the times when I am able to discuss important things with her.
Does your Mom have end of life documents done? If not, do it soon, regardless of whether she has a lot of assets or not. It's been a lifesaver for us. Use an elderlaw attorney and he/she should be able to advise you whether your Mom is still able to execute these documents or if you need to take another route.
There's no right or wrong in whether you explain what is happening to your Mom. Everyone is different and I'll bet you have a gut feeling about this already. Just remember that the odds are she'll forget it anyway, so whatever are the ramifications of telling her probably won't last long.

Good luck!

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 16, 2010 3:11 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
Post Re: How to explain LBD to LO
Just before last year's big decline, my dad's dr., in front of him, told me he had had dementia for at least 2 - 3 years, probably had Parkinson's and he could no longer hide the symptoms from the family. My dad was completely "checked out" through this dicussion. He looked as though he had absolutely no idea the dr. was even talking. I think he was so freaked out he just pretended he wasn't there, and that is why I was so protective of him and not wanting to mention the d word unless he asked, which took about 11 months after that appt. for him to ask. He really didn't want to hear it from the dr.
Kate is right - everyone responds differently and you'll probably get cues from your mom about what to say and not to say as well as who should say what. And, she's also right in that your mom may not even remember the conversation.
Best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 16, 2010 3:32 pm
Profile

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: How to explain LBD to LO
I don't ever bring it up because my MIL gets so upset. She thinks that she is the way she is because a doctor in the emergency room gave her the wrong medication (not true). I don't correct her anymore because she'll just forget again, and this doctor thing is stuck in her mind. No good answers.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Thu Sep 16, 2010 4:05 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
Post Re: How to explain LBD to LO
That reminds me - my dad tells every new person that he meets that he can't walk because his former dr. changed his cholesterol meds a few years ago and ever since then his left leg doesn't work.
I NEVER bring up his situation either - I only respond to his questions when he asks, and then I tread very lightly with my responses. It is just too distressing for him.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 16, 2010 4:24 pm
Profile

Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: How to explain LBD to LO
Wow! This thread addresses the dead-on dilemma many of us face--what/where is the balance with telliing the LO what is going on? Every LO is unique. Every LO's situation is unique. I am honest in responding to questions but understanding that most answers will be lost.

I share with Vermont-Lynn-artist the challenges of geography, with lots of added complications of a spouse situation.

With individuals of sound mind, I think it stupid to hide from them their diagnosis/prognosis. With dementia/impaired cognition, ???? Especially when the level of cognition waxes and wanes.

Gail


Fri Sep 17, 2010 3:30 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
Post Re: How to explain LBD to LO
There is at least one other place where this was discussed a few months ago. Don't remember where it was on the forum, but you can probably find it and find others' ideas on what they do/don't tell their LO, and how!
It is surely one of those challenges we all share.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 17, 2010 8:19 am
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: How to explain LBD to LO
Del is a part of every discussion about memory loss, dx, etc. It is his illness. He attends a support group for persons dealing with memory loss. His issues vary somewhat but there are enough overlaps so that he can feel that he is part of a community.

We also go to a Senior Center and we have lunch, most days, with about three other couples. Some of them are dealing with memory loss and all of us are dealing with the usual scary memory lapses.

Works for us.

Nan


Fri Sep 17, 2010 10:22 am
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: How to explain LBD to LO
Thanks to everyone who replied. The doctor at the teaching hospital did explain to my mother, but I am sure she has forgotten. My mother's doctor at home also has explained her illness to her, but either she doesn't recall or doesn't want to admit it. I think I will just continue to respond when she asks questions. Right now, she seems to be in denial of her memory loss and gets very angry when I am forced to tell her that she had been told something and must have forgotten. I think she is actually pretty frightened about what is happening to her, but she is not a very open person so she doesn't discuss her feelings. Kate, that's good advice about estate planning documents. Actually, I am an attorney, so I had those bases covered well before she lost compentency. Thank goodness for that--things would be much more difficult now if I hadn't.

Julianne


Tue Sep 21, 2010 9:19 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: How to explain LBD to LO
I'm unclear why you are "forced to tell her that she had been told something and must have forgotten"...?


Tue Sep 21, 2010 10:35 am
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: How to explain LBD to LO
Robin, here is an example of what I mean by being "forced" to tell her something she has forgotten. Last week, my mother complained about her teeth, and she asked me to make a dental appointment for her. There was a cancellation so she could be seen today. I called her back (last week) and told her when the appointment was scheduled. Yesterday, my sister reminded her about today's appointment and she became enraged because it did not fit in with her plans to have her hair done at the NH. She accused me of not telling her about the appointment. I felt I had to tell her that I had told about it her last week so she would not misunderstand what happened. Perhaps there is a better way to phrase it, but that is the kind of situation I mean. And maybe it is pointless to tell her that she has forgotten, but it is the only logical explanation, so I tell her. Often, I feel completely at sea when dealing with her. The person I have known all these years is gone, and I don't know what to do with the stranger who has replaced her.


Tue Sep 21, 2010 12:37 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
Post Re: How to explain LBD to LO
Julianne - I've had many similar situations with my dad, and they almost always have some element of his inability to understand time. He used to get really mad when anyone would come to pick him up for a dr. appt. too, accusing us of changing the appt., not telling him about it ahead of time, etc. Despite the fact we'd tell him and remind him several times, put a post-it note on his wall where he'd see it, write it in magic marker on his calendar, etc., he'd be mad when he thought he was being surprised with an outing. Or, he'd think I hadn't been there to visit him in months and I'd been there 10 days in a row. So, there are times when we are trying to be logical with an illogical person. And no, I just can't pretend like I haven't been there and go along with the delusion.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Sep 21, 2010 12:59 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: How to explain LBD to LO
Lynn, yes, my sister keeps reminding me that our mother's mind does not work like ours, or like hers used to work. I am getting used to my mother being mad at me for irrational things that I can't fix. It is just sad.

Julianne


Tue Sep 21, 2010 3:05 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 23 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr