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 re: how much should LBD patients know? 
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Joined: Wed Oct 24, 2007 5:55 pm
Posts: 39
Post re: how much should LBD patients know?
Hi All

I have recently purchased the new LBD book for caregivers. My Mum who is 62 has LBD as I have discussed on this forum previously.She is very aware of what is happening with her own situation and still in early stages and very "with it." She does have issues coping emotionally with what is happening and at times wants to give up.

The other day she saw at my home the LBD book for caregivers and said that next time she is over she wants to read it. I am very protective of the information I give to mum about LBD, always trying to focus on the positives. What is everyone's thoughts? I dont want to hand over the book with possibility that she might read it and be destroyed by what might lie ahead for her as spelt out in this caregiver book.

Can anyone recommend a book for patients, written by someone with LBD?
Am I being protective? Is it a right that my Mum read this information?


Mon Oct 05, 2009 6:37 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I think the Graboys book is very good. Check past posts about it and see how others introduced this book to their LBD loved ones.


Mon Oct 05, 2009 7:27 pm
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Joined: Wed Oct 24, 2007 5:55 pm
Posts: 39
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Thanks Robin

I have just ordered it online :) Look forward to receiving it, reading it and potentially sharing it with Mum.


Mon Oct 05, 2009 11:21 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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My Mother also has LBD - early on we were honest about what she had but really didn't elaborate on the later stages - She would ask questions everytime we went to the doctors. She did ask such things as how she would die, what would happen to her walking ability etc. I think at the earlier stages if they want to know they will find out. The one saving thing is the ability to concentrate- she has gathered information including a copy of her original accessment. She can't concentrate long enough to get real far into the info. If you try to hide info she becomes adament about getting her hands on it. She is more accepting of the diagnosis as time goes on.
Sharon

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Tue Oct 06, 2009 8:57 am
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Joined: Wed Oct 24, 2007 5:55 pm
Posts: 39
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Thanks Sharon,

Unfortunately my Mum does go into the darkest of places of wanting to know the worst case scenario. I worry that should she know she would "give up" should she know the possibilities. I try to be positive but at the same time honest and encourage her to focus on the here and now and that as Lewy is so different for everyone, no one can predict the outcome and how it will affect her specifically.

Unfortunately Mum's walking is already affected, she has a walking aid and gets very frustrated with her symptoms.

It's great to know that we can share our experiences and know that we are not alone.


Tue Oct 06, 2009 5:43 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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My Mother at 1 point thought she wanted to give up- but then she decided she couldn't just sit there and wait to die. I've just found if she thinks she doesn't know something she will hunt it down (or at least did till she is too sick) I didn't volunteer but would answer her questions as much as I could. There is much we don't know and I am honest with her about that. I did print out some of the very technical papers and left them around for her. She'd hoard them and look at them. Think she felt she wanted to be in control- in the know.
Good Luck
Sharon

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syt


Tue Oct 06, 2009 11:28 pm
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