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 My father does not accept his diagnosis. 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: My father does not accept his diagnosis.
I don't have a problem with using the work dementia when walking to others, with Frank I just say it's the disease that distroys different parts of the brain. I'm not sure what he hears or understands. I DON"T say diapers, I either say night pants or other pants when talking to him.

I think it's like cancer use to be, it was the "C" word. This is life and sometimes it stinks, so we just have to be sensitive to how others feel.

Tomorrow we are meeting Frank's brother and wife for lunch, they live 6 hrs away so we meet in the middle. His wife had to push the issure to get together, George is troubled seeing Frank in this condition and would prefer to remember him in earlier years. Again, I respect his way of dealing with this, I don't understand it, but do respect it.

Have a good day,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Jul 07, 2011 7:18 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: My father does not accept his diagnosis.
Gerry - I hope your visit goes well tomorrow. I don't know how or if we can ever get through to people who say they aren't visiting because they can't stand to see a person in the condition they're in, or they want to remember the person as they were. That's all well and good, but do people who stop visiting have any idea of how hurtful that is to the ill person or to the CGs and other LOs? Do they think the rest of us "enjoy" seeing our friends or relatives in their state of poor health?
I'm sure I sound like I'm on a soap box here, and perhaps I am, but I think it is very selfish to stop seeing a LO for those reasons. None of us likes to see people we care about in terrible condition, but we do it because it's the right thing to do. Some of my dad's friends stopped seeing him for this very reason, and when they'd call me and say "what can I do to help out?" I'd usually respond "go see him. I know it's an hour each way, but if you can see him once in a while it would mean so much to him." There were many people who saw him in his last week and told me at his memorial service that they were glad to have a final visit with him and thanked us for calling and telling them the end was near.
OK, I'll get off my soap box now. 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 Jul 07, 2011 9:30 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: My father does not accept his diagnosis.
Part of me wishes I could just remember my mom the way she used to be and not have to see her now, but I'd never abandon her like that. I have a beautiful picture of her with my dad and my son when he was little. All three are laughing. I want to blow it up huge and frame it, but right now it hurts too much to even look at it. After she dies, though, that's what I'll do. Then I'll have the really good cry I need to have but have only done in fits and starts because grief feels so "interrupted" while she's still alive and I have to be strong for her and Dad.


Thu Jul 07, 2011 10:58 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My father does not accept his diagnosis.
SM: I can tell that seeing your mom the way she is now does not prevent you from remembering her how she was in the past. I know how my mom is now, and how she was when Dad died, and how she was when her first grandchild was born, and how she was when I was in high school, and how she was when I sat in her lap and she read to me.

When people say that they "want to remember her the way she was" do they think viewing her now would somehow erase all the other memories they have of her? What a strange excuse.

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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 Jul 07, 2011 11:18 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My father does not accept his diagnosis.
my perspective on the remember as….

I just got a diagnosis this march…..I haven't changed much since then….

I have a sister that told my other sister…'she isn't ready to talk to me'…..

does she think she will catch something from me?

probably already has…..same genes and environmental exposures….

so….what is she doing except hurting me?

okay….she is hurting herself….she is wallowing in her fear…she certainly isn't going to hurt me by talking to me...

and I am the one with dementia….

we still hurt…

it is very hurtful to cut someone out of your life because they are sick…I need you in my life now….more now than ever…

I used the word 'cut' on purpose….

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Jul 07, 2011 11:41 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My father does not accept his diagnosis.
what a strange disease….

I had to look up two words to write the previous post….

hurt….

cut….

they didn't and still don't look right….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Jul 07, 2011 11:45 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My father does not accept his diagnosis.
Craig, early on Coy used to look words up in the dictionary almost every time he wrote anything. Now he mostly asks me. It is words like box and dish and went he was trouble with ... words he as known how to spell for 3/4 of a century! You are correct. This is a very strange disease!

That is too bad about your sister. I hope she comes around. I wonder what she is doing to "get ready" to contact you. It isn't just the disease that is strange, is it?

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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


Fri Jul 08, 2011 12:51 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: My father does not accept his diagnosis.
I can't help but think that those who "didn't want to see their LO in their current state" will be the ones left with a lot of guilt afterward for abandoning their LO. It really is painful when people abandon their relatives and friends when they need them most.
I wish everyone a peaceful day. 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.


Fri Jul 08, 2011 8:10 am
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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.
Who knows? But one thing I've learned over 66 years is that we can't change other people and we only frustrate ourselves by our expectations of them.

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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.


Fri Jul 08, 2011 9:30 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: My father does not accept his diagnosis.
Craig, I fully understand what you are going through. Since my MIL's diagnosis my sisters-in-law quit calling her. Not birthdays, Christmas, etc. They do not want to discuss her condition AT ALL. It all falls on my husband and myself. Lucky for her I come from the "Do-Good" family which takes care of everyone who need taking care of. Genetically programmed to take care of people, I guess. Anyway, I see the hurt in her eyes when I call my Mom every day and her own daughters never call. I hope your sister comes around. You sound like a great guy. 8)

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


Fri Jul 08, 2011 3:45 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: My father does not accept his diagnosis.
Frank and I met his brother and wife for lunch. The 2 1/2 hr drive went well, Frank slept both ways. I could see his brother was shocked, he hadn't seen Frank since November. I was struggling with tears, I live with this disease so don't notice the changes, but could see them thru his brother's eyes. Frank never looked up or said a word, he took one bite of lunch. This is the last time we'll plan on going out, except for Dr. appointments and his Dr said when it gets to hard to get him there, we can talk over the phone. He does spend much of the day sleeping.

Take care, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Jul 08, 2011 5:31 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 41
Post Re: My father does not accept his diagnosis.
Gerry, I'm sorry you had to experience the hurt all over again. For everyone, I don't understand people who avoid their loved ones - I just feel like it's abandoning them at the worst possible time. And it's selfish, in my opinion.

My older brother doesn't go to see our mom even though he lives 15 minutes away. It hurts me so much because I can't go see her as often as I'd like and yet he just won't do it. He makes excuses - he has to work, he is busy, he and my SIL are busy with my niece. I just don't get it. He has no clue what is going on and he doesn't want to. He doesn't seem to understand that this is going to get so, so much worse. He would ask my dad how mom was doing when she was first diagnosed and came home from the hospital and my dad would start to tell him the details and he'd interrupt and say, "No, I don't want to hear all that, I just want to know if she's okay". I want to scream at him sometimes but I won't because he'll never realize how important this all is until after mom dies.

And I fully realize things are easier in some ways for me since I live far away from my family but it just upsets me that my brother is missing out on seeing her. My younger brother lives with our parents so he knows firsthand what goes on everyday and the stress our dad is under. I just wish my older brother would help more so dad could have a break now and then.

Ugh, so frustrating, all of it.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Fri Jul 08, 2011 5:45 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: My father does not accept his diagnosis.
I'm so sorry, everyone. It is frustrating and hurtful, and some people are very selfish. Sending each of you a big hug - you will get through this but it will be hard! 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.


Fri Jul 08, 2011 9:11 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My father does not accept his diagnosis.
It is very sad how some other's treat our LO's, I think people just don't know how to handle it and it comes off as being uncaring, very sad disease !

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Irene Selak


Sun Jul 10, 2011 12:49 pm
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Joined: Thu Sep 29, 2011 9:06 am
Posts: 10
Post Re: My father does not accept his diagnosis.
Hello, I'm new here on the forum. My mother inlaw lives with us and has been dx with LBD. She refuses to believe that anything is wrong with her and has accused us many times of wanting to send her off somewhere or that we just want to make her think she's going crazy. No explanations will help. I get so frustrated sometimes because I feel like if she would just work with us, this could be so much easier. It's nice to know that my mother inlaw is not the only one refusing to acknowledge the facts. She's normally a very sweet precious woman. I couldn't have asked for a better mother inlaw. But lately, she can be the most hateful thing you would ever see. But the only people who ever see that side are me and my husband and our youngest son. She will not ask for help with anything, if I try to help her she gets angry. She acts like a rebellious teenager most of the time. So, right now, I just try to choose my battles. I love her dearly and I just hope that in heart (not in her head) she knows that I love her and am trying to do what is best for her. Thanks for listening to me ramble. lol. :)


Thu Sep 29, 2011 2:47 pm
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