A question and a suggestion

[Guest guest]

Hello there! Sorry I missed out on the chat tonight. I had a great weekend with my dad and have been trying to keep up good spirits. I didn't want to spend my Monday night crying again. It was awesome but really took a lot out of me last week.

I have a suggestion...if you're ever writing a note back to someone in particular, does everyone agree that it would be better to address your e-mail to that person's personal e-mail address? Sometimes it's a little overwhelming to get through all the e-mails and a lot of them don't pertain to the whole group. Just a thought! Let me know if anyone disagrees. Of course, if someone poses a question and you think the whole group would benefit from the response, then I definitely welcome those messages.

I also have a question. How much of what you all learn on here do you share with your loved ones? I'm starting to share bits and pieces with my mom and dad, but am afraid that my dad will start to worry a lot about what's to come. Is it better to know that certain things might happen or better not to? I'm of the mind that it's better to know b/c then you can prepare yourself, but I don't know much about the effects that would have on someone with LBD. Thoughts?

Thanks! Hope to see you in the chat room in the next few weeks. I still have to figure out the time difference (anyone on the west coast know what time that is? I was in there by fluke last week!)

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[Guest guest]

.. How much of what you all learn on here do you share with your loved ones?

Even though he has been with me during all the medical discussions, I do not think he has absorbed much...as though we were talking about a stranger.

I don't think my husband could live with the knowledge.

[Guest guest]

Thats a good question. My mother was just diagnosed with LBD and I do not think the Dr. are telling her. Yestureday she was upset with me because I am tring to find a place for her. She said I am putting her away. I feel the Dr. need to be blunt with her and tell her everything while she understands. I have been tring to tell her but I am not the Dr. What are your thoughts?

A question and a suggestion

Hello there! Sorry I missed out on the chat tonight. I had a great weekend with my dad and have been trying to keep up good spirits. I didn't want to spend my Monday night crying again. It was awesome but really took a lot out of me last week.

I have a suggestion...if you're ever writing a note back to someone in particular, does everyone agree that it would be better to address your e-mail to that person's personal e-mail address? Sometimes it's a little overwhelming to get through all the e-mails and a lot of them don't pertain to the whole group. Just a thought! Let me know if anyone disagrees. Of course, if someone poses a question and you think the whole group would benefit from the response, then I definitely welcome those messages.

I also have a question. How much of what you all learn on here do you share with your loved ones? I'm starting to share bits and pieces with my mom and dad, but am afraid that my dad will start to worry a lot about what's to come. Is it better to know that certain things might happen or better not to? I'm of the mind that it's better to know b/c then you can prepare yourself, but I don't know much about the effects that would have on someone with LBD. Thoughts?

Thanks! Hope to see you in the chat room in the next few weeks. I still have to figure out the time difference (anyone on the west coast know what time that is? I was in there by fluke last week!)

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

My mom was told by both me and the doctors but it just slipped right by her

without sticking. When I've tried to say anything - well there's just no

point.

Hez

_________________________________________________________________________

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[Guest guest]

Hi, and .

Lotsa questions, . Let's see. First, there's a 3 hr time difference

between the coasts (4 time zones). 6PM on the east coast is 3PM on the west

coast. 7-10 Central Time is 8-11 eastern and 5-8 western.

As for addressing replies, I'm for to the group unless someone just wants to

correspond with someone privately. But, to put the name of the person to

whom you are responding at the beginning, maybe even a piece from their post.

We often glean info or have thoughts stimulated by even brief posts and

replies.

As to what to share with LOs, I assume you mean the patient? I would want an

LO who is caregiver to have as much info as possible to help them cope. As

for the patient, I use discretion. My husband knows what is happening to him

(most of the time) and I feel no need to make it worse by giving him more

than he needs to know. When he asks I am honest with him, but not brutally

so. When they are in a state of mind to really comprehend, I think it is

just adding to depression to be reminded.

, I agree with telling your mom her diagnosis. My goodness, it is HER

life and HER health. I wouldn't want the truth withheld from me! I also

agree that the doctor should tell her. My husband and I got his diagnosis at

the same time from the neurologist, with some description of what was ahead,

but not much. Evenso, as I learned more about it and answered his questions,

he either didn't fully understand or it was so painful that he went into

denial. I don't know which. At one time he was surprised to be told for the

6-7th time that there was a cognitive element to the disease. He is still

mostly aware of the Parkinsonims and only occasioanlly of the cognitive

aspects. Also, his primary care doc told me once that occasionally the

patient needs a reality check, that they need to remember that they are ill

and that their illness doesn't only affect them, and we need to tell them. I

don't advocate the " everything you never wanted to know " approach, but

sometimes a reminder that certain abilities are limited. In the beginning I

had to remind my husband a number of times that he was not in this alone,

that not only was I there with and for him, but that his illness also

impacted me. It took awhile, but as he came to grips with his anger and pain

he got the message. Once we had our wills rewritten, our POAs and medical

directives in place, I quit ever referring to the cognitive aspects. But he

HAD to deal with the cognitive aspect as we drew up POAs so that he could be

sure to have things the way he wanted, knowing that he might live a long time

" out of it. "

Good luck, . I really hurt for you. Your mom may be going through the

grieving process of losing her " self, " and that has to be incredibly painful

and difficult to cope with. My husband was never a big talker about his

feelings; it would have helped me to help him if he HAD talked about his

feelings.

All the best to both of you,

Cheryl