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 Answer to Dublyde [?] Introductions 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 743
Location: LA
Post Answer to Dublyde [?] Introductions
Hi Debbie, Your topic is so important, I feel it needs to be brought into its own space and not lost in all the introductions. I hope you don't mind me bringing it here. [See introductions for the entry]

Debbie, I am so sorry to hear this. More, I am sorry for the children. It will be their great loss but as of now they do not realize it. Accept what friendship and help you can from others; get your medical plans set up where you are and when [not if] the children 'come to their senses' try to be gracious and accept them into their rightful place. Keep them informed so they will know but do not let them 'boss' you about your husband's care. Try not to be bitter just try to understand if you can. They will see you going ahead while relying on yourself. They may do a 'turn around' sooner than you expect. Even though they think you should not enter into their territory, there are other ways they can assist if you do not cut them off. The more they become engaged, even from afar, the more likely they will come to understand. You cannot nurture them anymore but you don't want them to lose you over this. They are not near so do what you can with what you have to work with. It is You who is important now. Nice to have moral support, but you cannot waste time and effort with what you know you will not get. Good luck.

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sat Jun 21, 2014 4:35 pm
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Joined: Sun Jun 08, 2014 11:24 am
Posts: 23
Location: Locust Grove, Ga
Post Re: Answer to Dublyde [?] Introductions
Thank you so much Doretha for your concern and reply. I am trying not to be bitter. I am so aware of the fact that bitterness only hurts me and I don't have the energy to waste. Yes, I am hurt and definitely disappointed but again I can't waste energy worrying about things I can't do anything about. I'm trying not to get myself wrapped up in worrying period. Today has enough worry of its own and I do believe that God has my tomorrow's in His hands. I am looking for the support of others who understand the dynamics of this disease. People who aren't going through this struggle really don't have a clue about the reality of life surrounded by this disease.

Debbie

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64 year old wife of Tom, 72, who was diagnosed LBD a year ago.


Sat Jun 21, 2014 10:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Answer to Dublyde [?] Introductions
You are so right, Debbie. I used to get so frustrated when my dad was so sick. People would say things to me like "Is your dad better today? I hope he gets better soon" and other things like that. It was heart breaking and frustrating, and I'd just have to say "Thank you for your concern, but he will not be getting any better." (sometimes it was multiple times to the same people, despite their background in medicine!!!)

Can you join a local support group as well? I found that very helpful and made several long term friends from one of our local groups. 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.


Sun Jun 22, 2014 10:27 am
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Joined: Sun Jun 08, 2014 11:24 am
Posts: 23
Location: Locust Grove, Ga
Post Re: Answer to Dublyde [?] Introductions
The nearest support group is about an hour away and I am not comfortable leaving everyone for the time it takes. Who knows I may decide I need to go regardless in the future. Thanks I really do wish there was one closer.

Debbie

_________________
64 year old wife of Tom, 72, who was diagnosed LBD a year ago.


Sun Jun 22, 2014 10:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Answer to Dublyde [?] Introductions
Debbie - I don't know where you live, but in some places there are groups that meet online, live. This might be an option for you if there is such a thing where you live. In the Adirondack region, there was a live, online group starting a few years ago. This seemed like a great option for those who just couldn't get away from their CG duties, and because it was people in one geographic region, if they needed to share advice about doctors and other local topics, it seemed like a good idea to me. Another option - if there are at least a handful of CGs of people with dementia in your area, perhaps you can start one yourself. 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.


Sun Jun 22, 2014 11:27 am
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