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 My father does not accept his diagnosis. 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3117
Location: Vermont
Post Re: My father does not accept his diagnosis.
Great idea. Maybe you should suggest it.

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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.


Mon Apr 18, 2011 9:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father does not accept his diagnosis.
(I'll try to get back on topic. Perhaps the chit-chat can be continued in the "off-topic" area...)

Emanuel,
One thing I've learned from attending Parkinson's Disease support group meetings is that if there are 40 people in the room, there are 40 types of PD seen. (This was discussed in last week's PDF webinar as well.) So, just because someone carries a particular clinical diagnosis doesn't mean we can know what symptoms will appear. Even if someone could accept a diagnosis (with all the problems of diagnostic accuracy), it wouldn't make sense for the person to accept any sort of future based on the diagnosis.
Robin


Mon Apr 18, 2011 11:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3117
Location: Vermont
Post Re: My father does not accept his diagnosis.
Perhaps we all get a little sidetracked at times, and perhaps it is only the moderator's responsibility to ask people to move their topics. A little humor in the midst of a lot of very depressing posts might actually help some human beings have a little laughter in their lives. 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.


Tue Apr 19, 2011 7:47 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My father does not accept his diagnosis.
Lynn,
You are correct it is my job and I didn't see any harm in the mild chit chat, for all others that it bothers please move on !

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Irene Selak


Tue Apr 19, 2011 8:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3117
Location: Vermont
Post Re: My father does not accept his diagnosis.
thank you Irene. I thought maybe you had been replaced as moderator and there was some new "rule" that we didn't know about! :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.


Tue Apr 19, 2011 8:34 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: My father does not accept his diagnosis.
Before we stick to the subject at hand, let me say that most of the time I am a lurker. Once in awhile I do post but not very often. With that being said I read every post daily and enjoy a little humor tossed into the posts. I am the sole caregiver to my husband for the past 10 years and a little laugh now and then helps me to be a better person for Fran. Laughter releases stress and we all know what stress can do to a caregiver. Thank you Irene for allowing some humor into all of our lives. A little chit-chat tossed in the posts is a good thing for all concerned. Irene, you are a great moderator, thank you. Bernie


Tue Apr 19, 2011 10:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: My father does not accept his diagnosis.
BernieD wrote:
Thank you Irene for allowing some humor into all of our lives. A little chit-chat tossed in the posts is a good thing for all concerned. Irene, you are a great moderator, thank you. Bernie

Amen to that!

_________________
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.


Tue Apr 19, 2011 11:53 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father does not accept his diagnosis.
Emanuel,
I was reading over this earlier post of yours and thought it was interesting that your father wouldn't accept his LBD diagnosis. I guess the neurologist didn't accept it either since the neurologist recently changed the diagnosis to FTD!
Robin


Fri Jun 17, 2011 2:28 pm
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Joined: Sat Sep 23, 2006 1:12 pm
Posts: 23
Post Re: My father does not accept his diagnosis.
Going back to the original issue of a person not accepting their diagnosis or wanting to discuss it: Why should a person have to accept it? Sometimes a little denial keeps a person from getting depressed. Imagine if you had to hear that you would hallucinate or have personality or cognitive changes and eventually ...die? I don't think I would want to hear that. I would get angry and I would get depressed.
In this disease, WE do have to think about the future but it might be better to stick to one day at a time with the person who has the disease.
When a person is hallucinating or paranoid, they are not going to listen to someone telling them they are wrong, no matter how many discussion they had previously. That is the nature of mental changes.
With my husband, he and I indulged in lots of denial for as long as we could. I don't mean the kind of denial where you don't get medical help. I just mean day to day, enjoying the moment. If you have this sentence hanging over you, it's impossible to do that.
So instead, I focused on the Parkinson's symptoms, trying to get my husband to do exercises and just think on those lines.
We did go thru several years of paranoia. You just have to survive that time. It will pass.
When trying to be painfully honest with someone with dementia you have to ask yourself what is your goal: is it for your comfort or for their's?


Thu Jun 30, 2011 10:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3117
Location: Vermont
Post Re: My father does not accept his diagnosis.
I think there is a difference between denial and not letting the diagnosis get you so down you are non-functional. I think the idea of living in the moment and making the best of each day is how many people I know live relatively content lives, even with a horrendous diagnosis.
My next door neighbor was such a role model for living with something terrible (reoccurring brain tumors, numerous surgeries, etc.) for at least 10 years. He accepted his dx but he lived every day to the fullest and was able to do many things the drs. told him he'd never do again. He is one example of many people I've known who were/are not at all in denial but get a lot out of life.
I hope if I ever get a dx of something life-threatening I can learn from those who have adopted such positive attitudes and make the most of each moment. They are an inspiration!

_________________
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 Jun 30, 2011 11:20 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father does not accept his diagnosis.
"When trying to be painfully honest with someone with dementia you have to ask yourself what is your goal: is it for your comfort or for their's?"

I think this is a very insightful comment. Many caregivers want the care recipients to "understand" that they have dementia, but what's the point?


Thu Jun 30, 2011 11:28 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: My father does not accept his diagnosis.
I wholly agree. But I think where the trouble lies is when restrictions are imposed--out of necessity--like driving, being left alone, making decisions, etc. Then it gets tricky.

_________________
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 Jun 30, 2011 12:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: My father does not accept his diagnosis.
I would add that, while my husband's primary diagnosis [on his chart] is Dementia with Lewy Bodies, his secondary dx is Parkinson's Disease. I suspect that, unless this secondary dx is included, the insurance might not pay for the PD medication [Sinemet] that he takes. He has always accepted the PD dx and, back when he could remember it, would tell people that's what he had.

_________________
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 Jun 30, 2011 1:22 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: My father does not accept his diagnosis.
My MIL was diagnosed years ago and has never accepted it. She tells people, even the doctors, that it's heck to get old. If she wants to believe that it's just old age, then that's fine with me.

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


Fri Jul 01, 2011 10:19 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: My father does not accept his diagnosis.
My hb is the same, in complete denial and insisting he's fine. He lost his d/l a year ago, every so often he'll ask me why and what he should do. I've learned to just say "I don't know". I recently figured out that I could take advantage of his denial. When he wants me to contact the DMV or deal with some other issue I tell him they will only talk to him. It's much easier than coming up with excuses that won't anger him (there are none). I say it's his business and I just don't know anything about it, not even the number to call. His cognition is spotty at best so he can't try to follow up and quickly forgets the issue.
I do wish, for me not him, he would accept it. I'd like to be able to gently joke and take the profound sadness away by facing it together, as we faced so many things in 47 years of marriage.


Sun Jul 03, 2011 5:03 am
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