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 Is there a link to the tributes left here? 
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Joined: Wed Mar 11, 2009 1:54 pm
Posts: 8
Location: Highwood, IL
Post Is there a link to the tributes left here?
Hello everyone,

Two weeks ago today I lost my mother to Lewy Bodies. She fought long and hard in her battle to overcome this terrible disease. I am so proud of how she fought this but deeply saddened beyond words to see that it has finally won over her. As her caregiver I foolishly thought I would feel some sense of relief at her passing, relief that she was no longer suffering. Was I wrong on that note!! The moment she passed, it seems I had forgotten all the stress and the hard times of taking care of her and wished to do it all over again just to have her here with us. What hit me the week before she passed was that I had wished so hard for the disease to be gone that I didn't quite realize that in order for that to happen she had to go with it. Sounds silly I know, intellectually I knew that the disease was taking her, emotionally I was no where near ready, and to be honest, I'm still not ready to have lost her already. But I'll cope with it and learn to live all over again without her as hard as it will be.

So in my search today to help me to try and feel better, I came here to see the tributes left for my mom, only I can't find where they are. For my mom's memorial service my brother's put together a beautiful paper with her picture and a note stating in lieu of flowers to please donate to Lewy Body Dementia Assoc., he also noted that at the bottom of the page they can leave a tribute. I thought this was wonderful, but what good is a tribute if you can't read them? It may be that in my grief I may have overlooked the button to see the tributes. Can anyone help me with this?

Thank You in advance if you are able to help!
Bethann....loving daughter of Roseann Tucker


Wed Nov 04, 2009 10:10 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sorry to hear of your mother's passing. Grief is ongoing. Your thoughts will change a lot over time. I suggest you join a grief group through hospice, your church, or where ever you can find one!

There is no tributes page on the LBDA Forum. Could I suggest you contact the LBDA? Phone is:
National Office (Atlanta, GA): 404.935.6444

(I would've forwarded on your post to you and the LBDA via email but you don't have an email address listed in your Forum profile.)

Perhaps the tributes on are lbda.org but I couldn't easily find them.

Could your brothers have meant to leave tributes on the funeral home page?


Wed Nov 04, 2009 11:11 am
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Joined: Wed Mar 11, 2009 1:54 pm
Posts: 8
Location: Highwood, IL
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Hi robin and thank you for your response.

I will be joining a grief group soon. I'll also check my profile here, didn't know I didn't have an email address there either, I'll add it now.

Yes, the tributes are to be on lbda.org and if you go under the 'donate' button and scrowl down you'll see where you can put the tribute, just doesn't show where you can view the tributes made. Thank you for the phone number, I'll try to call that as well.

We didn't have the traditional funeral for my mom and therefore we didn't use a funeral home for her 2 memorial services, or what we called them were her Celebration of Life services. It was what she wanted and I have to say that they both turned out wonderful.

Thank you again robin, after I call the lbda I'll post what they suggested for anyone else.

bethann


Wed Nov 04, 2009 11:39 am
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Joined: Wed Mar 11, 2009 1:54 pm
Posts: 8
Location: Highwood, IL
Post contacted lbda
hi again robin,

I called the number for the site you left for me and spoke with a lady named Kim. She told me at this time they don't have a link on the website to view any tributes left but they are looking into putting one up.

She also told me as we were talking that she had received an email from you ( I believe it was you? ) asking for her to get in touch with me. THANK YOU for that!!

I know this may be hard for many of you to think about right now but I'd like to let you know and possibly encourage you to do the same when your loved one passes. Just before my mom passed, my family, her life partner and I gathered around to talk about a brain autopsy and/or brain donation for the search of a cure for Lewy Bodies. It wasn't the easiest thing to talk about but we were all in favor of donating for a cure. Her neurologist is a specialist at Northwestern University of Chicago Hospital and since she was a patient of his they were able to perform the brain autopsy free of charge, they also informed us that they kept the samples for use in later studies. After taking care of my mom with this horrible disease and seeing first hand how it affects the patient and everyone involved I feel desparate for a cure of some kind. I pray my mom's donation will be of help in the future.

May God Bless All of you involved with Lewy Bodies!!
Bethann....loving daughter of Roseann Tucker


Wed Nov 04, 2009 12:07 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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Bethann,

Yes, I did send an email to Kim at the LBDA, asking her to take a look at your post. Glad you got in touch. I agree that it would be nice if you could see the tributes. Did Kim say if she could print them out at some point and email them to you?

So glad to hear about the brain donation! Good going! I'm sure your mother would be pleased. Who is your mother's neurologist at Northwestern and do you recommend him/her? Did Northwestern give you some idea of when they would be giving you the neuropathology report? I've arranged for brain donation (in an LBD case) through Northwestern before; they did have a reasonable charge for this family as the person was not a Northwestern patient. They were very easy to work with.

Robin

PS. You might post here about the brain donation as there's more chance people would be reading about brain donation in that post rather than in the Welcome area:
http://community.lbda.org/forum/viewtopic.php?t=1290


Wed Nov 04, 2009 12:11 pm
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Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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Bethann: what a wonderful daughter your dear mother has. I do so admire you for the loving care you gave her & what a tribute to celebrate her life. Sounds like she was an admirable person as well as sensible in telling you what she wanted when she died.

I'm sure with time the grieving will come more easily or least one can hope & pray that it does. Meanwhile, take good care of yourself & do find a group as Robin suggested or grief counselor to help you along the way. It is so worth it. Dee


Wed Nov 04, 2009 1:23 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Bethann, Sorry to hear about your moms passing. One sad fact about LBD, it never leave without taking a loved one.
Take Care,
Gerry


Wed Nov 04, 2009 8:54 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Bethann,

So sorry to hear of the passing of your mother but happy for her that she is no longer suffering. You are a wonderful, loving daughter. She will always be with you in spirit. I know exactly what you mean when at the moment of passing you said you would do it all over again just to have her back again. The thought of not having your LO in your life is overwhelming. Allow yourself to grieve. Healing will take time. Our thoughts and prayers are with you.

_________________
Dianne C.


Sun Nov 08, 2009 12:58 pm
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