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 My father does not accept his diagnosis. 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post My father does not accept his diagnosis.
Why do some people accept they have the disease and others don't? My father won't accept it at all. When the doctor told him he had LBD he just sat there blankly, even though it was a good day for him and I knew he heard and understood. Whenever my sister or I try to bring it up with him he doesn't want to talk about it. Yet he often gets angry and blames us for taking away his freedom.

Similarly, when doctors told us last December that he should not drive, he accused us of conspiring to try to lock him away in an institution. So his neurologist ordered a driving assessment test. He failed it and now he is accusing us of having conspired with the assessor! He keeps insisting he is fine, when he clearly is not.

It's so difficult for me to understand. Is it part of the dementia that he is unaware of his cognitive deficits? Or is my father just in denial as someone might be who say, has terminal cancer and refuses to believe it. It's hard to believe he can't notice his cognitive symptoms. He stares blankly. He can't understand much of what we say and we have to repeat it over and over. He uses words incorrectly and can't remember basic words and names. His motivation to do things other than eat and watch TV has virtually disappeared. He sleeps 14 hours a day and always is shaking and talking in his sleep.

His physical symptoms he acknowledges some of the time. He has continual hand tremors and walks with a stoop and shuffle. Getting out of a chair is very difficult for him and he often falls back a few times before succeeding. He falls. Yet sometimes he doesn't acknowledge these either. This makes me believe most of his refusal to accept his diagnosis and symptoms is classic denial, rather than the disease itself clouding his ability to recognize them. Yet I am not sure.

The few times I tried explaining the disease to him and what his symptoms are he got angry and went into his whole, "you kids want to lock me up in a loony-bin" monologue. Anger and aggressiveness are said to be part of the disease, yet my father has always been an angry man and used his temper to make his point and avoid accepting responsibilities. So its hard for us to know what is going on here.

Has anyone else experienced this with their loved one? What strategies are there to help my father accept his diagnosis, or should we even try for that? It just seems that humoring him is not going to help him in the long run. I just don't know.

Thanks,
Emanuel


Thu Apr 07, 2011 1:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My father does not accept his diagnosis.
Yes, my husband was in denial for years. No, there is no way to convince them if they don't want to believe it. Just do what you have to do--you're not dealing with a responsible adult any more. Steps have to be taken for his safety and sometimes for others' safety, as well. When he rants, just say you understand how helpless he feels and how it must be very frustrating for him. And leave it at that. [This is easier said than done but it's probably the best way to handle it].

_________________
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 Apr 07, 2011 2:17 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: My father does not accept his diagnosis.
I think what you are experiencing, Emanuel, is partly basic personality (anger and avoiding responsibility), partly diminished cognitive ability and lack of awareness, with a heaping dose of denial spread over both. Yikes!

During the first year, my husband had little awareness of his impairments. I had the impression that it was mostly the disease interfering with his memory of what he had just done or failed to do, and general cognitive decline. It could have been denial, too. Who knows? He now accepts that he has dementia.

I can tell you that it is much easier for the caregiver when we can talk openly with our LOs about the disease. We blame Lewy for Coy's lapses and can even joke about what Lewy is up to now. But I can't tell you how to make that happen. I think mockturtle is right. You just do what you have to do.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Apr 07, 2011 2:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: My father does not accept his diagnosis.
I'd venture to say that close to 100% of the people on here have experienced this with their LO some or all of the time. A few might have accepted the fact that they have a disease that includes a whole host of symptoms. I never liked to use the word "dementia" to or in front of my dad. When he'd get angry, frustrated or scared and ask me "why can't I do x,y,z" or "what's happened to me? Why don't my legs and arms work anymore?" I'd calmly tell him that there is something going on in his brain and I'm trying very hard to work with the drs. to get some meds that will help him. That seemed to reassure him. Of course I had to repeat that a lot, but it seemed to work.
It will probably be more helpful to you to just accept the fact that your dad is behaving the way he is because he is ill. Even if he could have been nicer before he was ill, he can't control a lot of his personality traits at this point. A few times when my dad would get angry over nothing, or little issues, I'd calmly tell him that I couldn't be around him when he's acting like that. If he continued to rant about whatever, I'd tell him I had to leave for the day and I'd see him tomorrow. Then I'd leave, often sit in the car and cry from exhaustion, sadness and/or frustration, then get back on the road and drive back to his house. Sometimes you just have to remove yourself from their presence for your own sanity. Lynn

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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 Apr 07, 2011 3:00 pm
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: My father does not accept his diagnosis.
One thing for sure, he will change...almost daily. At least it seems that way to me. My LO keeps changing back and forth to all sorts of phases...he gets better, worse..non verbal...explosively verbal....over and over. It is a rollercoaster ride for sure.

One thing I try to do is not engage in a lot of discussion about anything. They will take parts of a conversation and focus exclusively on it to the extreme...and forget facts and logic, might as well be a bandage for a headache.

I hope things get better for you.

_________________
~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Thu Apr 07, 2011 9:25 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: My father does not accept his diagnosis.
You're so right, Debra! With Lewy, you just can't win. A perfectly innocent and friendly remark will be twisted into some kind of diabolical plot. The less conversation the better, I think.

_________________
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 Apr 07, 2011 11:10 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father does not accept his diagnosis.
Thanks everyone.

And yes, Debra, I have already noticed exactly what you say about focusing on one word only and not even hearing everything else in the conversation or even the sentence.

Emanuel


Fri Apr 08, 2011 5:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My father does not accept his diagnosis.
I heard once that you shouldn't take away someone's denial unless you have something to put in its place (that they'll accept).

We have quite a few members of the local support group whose family members didn't accept the diagnosis their entire lives. Some only accepted that they were dying hours before they died.


Thu Apr 14, 2011 8:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My father does not accept his diagnosis.
Loved your first sentence, Robin. That makes so much sense to me. Lynn

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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 Apr 14, 2011 8:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My father does not accept his diagnosis.
Emanuel,
Besides the other points made here (particularly that many do not use the word "dementia" in communicating with their family members), it doesn't make sense to be locked-in to a given diagnosis since the accuracy of the diagnosis cannot be determined until brain autopsy. I posted here recently about a small study showing that half of the Alzheimer's diagnoses were incorrect, and the accuracy for LBD is less than that. So, it may make the most sense to simply talk about symptoms and not give any name to the overall disease.
Robin


Mon Apr 18, 2011 8:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: My father does not accept his diagnosis.
Maybe it was easier in ancient times when these kinds of things could all be blamed on evil spirits! :P

_________________
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.


Mon Apr 18, 2011 8:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: My father does not accept his diagnosis.
Yeah, but that's when they cut holes in people's skulls to let those evil spirits out!

_________________
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.


Mon Apr 18, 2011 8:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My father does not accept his diagnosis.
Nah, they usually just did an exorcism or other such ritual! If I thought it would help.... :P

_________________
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.


Mon Apr 18, 2011 8:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My father does not accept his diagnosis.
Maybe you should try exorcism. I knew a family in Africa who had a witch doctor do some sort of exorcism of their vacation home in Kenya, which they thought was haunted. It involved sacrificing a chicken and sprinkling its blood on the tops of all the windows and doors of the house. Probably Derek's ALF wouldn't like that, though, too much of a health hazard. :lol:

_________________
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.


Mon Apr 18, 2011 9:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My father does not accept his diagnosis.
Maybe they could do it in the kitchen and call it 'dinner'. :lol:

_________________
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.


Mon Apr 18, 2011 9:32 pm
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