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 Welcome to our online community! 
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Joined: Wed Aug 06, 2008 2:24 pm
Posts: 39
Post Welcome to our online community!
Webster's Dictionary defines community as "a unified body of individuals."

With that in mind, we welcome you to LBDA's online community - a unified body of individuals who have been deeply affected by Lewy body dementia. As a member of our community, we hope you will gain experience, strength and hope from one another!

Whether you are here for the first time, or have been on our forum for years, we invite you to introduce yourselves and share a bit about your journey with LBD. After all, isn't that what community is all about?

Looking forward to meeting you,
Angela Taylor
LBDA


Tue Aug 12, 2008 10:19 am
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Hello to all!

My name is Irene Selak, and I am pleased to see the new introduction room has been added to the forums, this is a place for all to meet and introduce themselves, the other area's are used for a place to share and receive information and help on issues that you and your family may be dealing with. Please feel free to look through all past posts in search of information and if you don't find what you need please just ask, we have many informed , helpful people here.

I have been a volunteer for the LBDA for several years now and I love what I do for them, I moderate here at the forums and I also coordinate the LBDA help-line, I have met so many wonderful people over the years.

I first became involved with Lewy Body Dementia when my husband was diagnosed after searching for years to get to root of the medical issues he was having, his total time with the illness was approx 9 years, with many ups and downs, he was released from his suffering almost 3 years ago.

So I say to all welcome! You are all in my thoughts as you travel the Lewy road with your Loved One! It can be a bumpy road at times and we are all here to help one another over the humps.


Tue Aug 12, 2008 12:37 pm

Joined: Sat Mar 22, 2008 9:14 pm
Posts: 15
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Hi manymoons, I just read your post and it brought back a time when I felt so lost and unsure. It's weird how I feel so connected to this sight. I was reading just this morning my journals I have written over the years of my time living with my mom and when she began her illness {{of what we at the time didn't know what Lewy Body was}}, but knew for sure something was happening to her. When you wrote in your post about not knowing how long this "semi-life" will continue, it made me remember all those feelings of how I felt during those bumpy times in my life with my mother.

I am glad I wrote down all I did at the time, although there were many stretches of time I didn't journal and write, one time even a whole year. I tell you this, because I found it so important to journal my feelings and thoughts. One day you will read back on all you felt, and as upsetting as it can be, when you finally do have a clearer outlook on life and all that you have gone through, you will find comfort in knowing that all that you did do for your loved one was accounted for and you can look back knowing you did the best at the time you were living through it. I concentrated more on my "feelings" and inner thoughts as I journaled. more so than actual incidents. I did at one time write everything down, and it was becoming a novel (with thoughts that maybe one day I'd write a book). It was so overwhelming after a few years, and because of my anger and resentment at times, I ripped it up and threw it away, because I never thought the road I was on at that time in my life (with being caretaker and dealing with the illness my mom had) would ever end.

I would write down everything, just to document it. Just to prove to myself and others (maybe one day in a book) that I could justify all that I lived through with mom's "weird" ways. As much as I wish I would have saved all I wrote, the many many unending stories and incidences, I know that if I had to write them all down again, I could. I think I ripped up all I wrote also because I was angry and couldn't believe all the stories myself. It was almost too "unbelievable". But unfortunately, it was true. I thought I was alone, that no one would ever believe "my story of mom and her dementia". We always feel like we are the only ones.. like we are the "chosen" ones.

Towards the end, when mom was really getting bad, I started to change. You feel like you have to protect them. That you don't want the world to know just how bad and demented they are. So you protect them, like you would a child. Your heart breaks, and your anger turns into compassion and sadness. Your heart breaks for them knowing that this is not the life they would have wanted for themselves. I have found so much compassion in myself towards others now that are either going through or have gone through this journey of LBD and just about any kind of dementia. I don't feel threatened that their story is worse than mine... I have learned that we are all in it, are living it, have lived it, or will live it. Every one's story is different, because everyone's life is different, everyone's loved one is different. Although a lot of the symptoms and stages will be the same, everyone's story will still be different. When I hear someone say they are just beginning to worry about their loved one, it burdens me, because I want to tell them all I know, but it's so overwhelming. So instead, I silently say a prayer for them and their loved one that they find strength in the Lord to help them and guide them in their journey, for I know the road ahead is not going to be easy, by any means. I am always here to give advice or a suggestion, but bottom line, everyone is going to do what "they feel is best to do in "their" own situation". I'm sorry for rattling on, but after reading my three journals this morning, I have a lot to say. lol sorry.

I would love to write a book one day, but I don't feel I know enough about all there is to know, even though I have lived first hand all the stages of LBD with mom. That's why this forum is great, to just write and blog and express what you feel and know.

Good luck and hopefully our paths will cross again on the LBD forum.
~~jangle~~


Fri Aug 15, 2008 10:33 am
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jangle wrote:
Towards the end, when mom was really getting bad, I started to change. You feel like you have to protect them. That you don't want the world to know just how bad and demented they are. So you protect them, like you would a child. Your heart breaks, and your anger turns into compassion and sadness. Your heart breaks for them knowing that this is not the life they would have wanted for themselves. I have found so much compassion in myself towards others now that are either going through or have gone through this journey of LBD and just about any kind of dementia. I don't feel threatened that their story is worse than mine... ~~jangle~~


There is so much truth to what you write, once we get past our own exceptance of the disease, we really do start to see things differently. Earlier on when my husband was doing "things", I was sure he was doing on purpose to get attention or what ever I thought at the time. I learned to embrace LBD and want to do everything I could to protect my husband from all the bad things around him, such as outsiders not understanding, stood up for him when I made up my mind he would stay home until the end and he did! So many came and went in our lives with their opinions, such as putting him a "place" and there was actually a time when I thought I might with the agression he had but I "learned" to deal with it and once I was able to deal I could do anything. Do I think it is wrong for many with LBD to be placed , absolutly not, as you pointed out everyone's story is different! It just wasn't right for us and I had the the resourses to be able to keep him at home of course using those resourses changed things for the rest of my life but that's OK.
The end was hard but I did at that point really know what the important thing was for us and that was to just be with my husband and love him the way I always had and make him feel safe in his world of dementia !


Fri Aug 15, 2008 12:33 pm

Joined: Sat Mar 22, 2008 9:14 pm
Posts: 15
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thanks for your replies.. maybe one day I will write a book. My life has changed so much during the past years.. especially since mom's passing in March. I'm just starting to find myself again, and with both my kids going off to college next week, I will surely feel the "empty nest syndrome". I'm starting to get into altered collaging and am finding a very good outlet in finding my inner self again through art. I have always wanted to get into my "art projects" again, and I have finally begun. My comfort comes from knowing that my mom is giving me the push to do this. She always knew how talented and creative I was and wanted me to pursue my art, but never did. So I am starting to finally take the steps in getting it together. I'd like to start on a forum on here, maybe a creative one. Maybe toss some creative ideas and thoughts around. I also put together the memorial service for my mom, my sister and I did alot for that, and I would love to share all we did for that. We got so many compliments on how well it was put together. We didn't mourn her loss that day, what we did instead was celebrate her life and the wonderful woman she was and would want to be remembered as.
~~jangle~~


Fri Aug 15, 2008 9:34 pm
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