HI...

I am new to LBD and this forum. My father was recently diagnosed and we are dealing with a variety of symptoms - falling, dementia, etc. He is in denial and he is trying to protect my brother, sister and I. He plays it up like everything is OK - he is trying to do everything that he used to do that he really shouldn't be doing. How do I talk to him about it? I want to start spending more time with him and it is going to be obvious to him why....how do I begin the discussion? Any advice would be appreciated. Why can't I stop crying?

Kath:

Where you're at is *totally* understandable. It's natural to hear the word "dementia" and think that it's a short, nasty brutish ride to a horrible place. I was there too.

The thing is, DLB responds to a comprehensive management strategy. There are scores of examples of people who are "better" now than they were at the time of diagnosis, and progress remarkably slowly year to year. It's not easy, but there is always *something* that can be done to improve functioning or ease suffering, and that's not like other dementias at all.

Once things get stabilized, then you can work on incremental improvements - some of the things have been small; in others, you can't tell that Cal has DLB anymore. We know it won't last forever, but it's pretty amazing while it does last.

Before you do anything else, look at some of the case reports in this paper:

http://www.lewybodydementia.org/Boevelink.php

Seeing that people got *better* from a state at least as bad as my LO changed the game for me - it went from being an issue of keeping Cal safe and comfortable through an upcoming crisis leading to death, to helping him have as rich and full and long of life as he wishes - a major sea change.

We're here. Ask us anything - from stupid questions about coping with some symptom that seems trivial to the Big Existential Questions - someone is here who cares.

Eric

Eric...

Thank You. You have given me light when all I can find out there about LBD is darkness. I printed the paper and will read it tonight. Thanks for being the light. Ieven stopped crying for a minute : )
Kath

Hi Kath,
Just want to welcome you to the LBD forums, Eric has given good advice as always and I can only echo his thoughts, read, read, read! We are all here for you as you go through this and there is always someone around to help when needed!
Good luck along your Lewy Path.

Kath --
In addition to read, read, read ... cry, cry cry!! You have every reason to ... shock, terror, the thought there will come a time he won't recognize you. When Jerome was originally misdiagnosed dx'd with Alzheimer's, I cried for four months straight ... any time Jerome was not in the same room with me. I thought I'd never get past the weepies. But then one day, it just stopped and I realized I was missing all the time we still have. It feels horrible at first, but once you feel knowledgeable and engaged in making him feel as healthy as possible, you start living each day again and adjusting to the small incremental changes that will continue to happen from this point forward. There are so many good people on this forum who have travelled the road ahead of us and who are always here with information, tips, guidance and compassion. Use this resource ... it's a wonderful one. I won't say welcome because we would hope no one would have reason to join this group. So I'll just say we're here for you and we understand. Best ...