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 I am NEW to LBDA and my name is Kimberly. (Kim) 
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Joined: Sun Mar 14, 2010 1:11 am
Posts: 20
Post I am NEW to LBDA and my name is Kimberly. (Kim)
Hello , I just wanted to share my story about my aunt Tereca who suffers terrible from this ongoing disease called Lewy Body Dementia.
It began about 7 yrs ago however she was just diagnosed 3 yrs ago from her Neurologist. She lives alone, but that changed since she went into the Hospital for a kidney infection in January of 2008. This was the Month that I became her primary caregiver. From that time up until now we have experienced a lot of trials and errors, and fluctuations and Hallucinations.
I do believe the kidney infection only worsened her condition as she was on Parkinsons meds at that time and to add antibiotics (Levaquinn) to this disease was a bad call. This only put her back into the Hospital with severe hallucinatins along with taking Comptan. We found through experience with different meds.. that LBD is extremely very sensative. This can cause the disease to worsen... and worse it can also cause death.
The fluctuations however were also very hard to endure as she would know me one minute and then the next minute she would be telling the mail man that I was trying to kill her. She would actually stand in one spot and SCREAM for several seconds to no avail! I had a telephone thrown at my head and she threw my purse across the kitchen. Fifteen minutes later she would calm down and ask if she could watch TV? She was Mrs Jeckle one min and Mrs Hyde the other and this went on for days, hrs and minutes. I had to have eyes in the back of my head. She would experience night tremors as well, she would yell out and scream while sleeping. The Hallucinations were quite bad too. Objects in her home terrified her and she would see them as people she didnt know, or flowers that were not there and sometimes she would have lucid conversations with the people she saw and with me too? I found this to be quite earry? But I never told her that the hallucinations were not there because she would disagree and this would tend to upset her ..alot. So if there is a man wearing a football on his head then by golly thats what I see too! Now we get along just fine. There were so many things that she did that were really caused by the illness that I can just remember a few.
But to see her decline from October 2009 to today, she can no longer walk, or move her knees, or stand, or lift herself in any way. Today she is totaly dependant on me and her son (whom has moved in with her since June 2009). Yesterday she could not help with standing just to transfer her from the bed to her transport chair so now Hospice is in the home and has set up a hospital bed in the living room for her. She was loosing 5 pds a week then she would stablize. Now she has problems with vision and depth perception as well. I am keeping track on a journal of her declining and also video taping her as well so I can post it somewhere to bring awareness to others who may suffer from this horriffic disease. But for now I am taking one day at a time and taking care of her. But my heart hurts.


Sun Apr 04, 2010 8:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
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Welcome Kim, you are among understanding, supportive friends here and there is a lot of information as well. We can all relate to what you are going through, but this is a good place and I'm glad you found it! Try the chat sometime too. Lynn


Sun Apr 04, 2010 9:02 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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Hi Kim,

You posted an introduction to yourself and your aunt here -- http://community.lbda.org/forum/viewtopic.php?p=16851 -- and some of us already welcomed you. Welcome again!

Robin


Sun Apr 04, 2010 9:28 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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Kim,

I'm so glad to hear that you are making a video record of your mother during these difficult days. Many people will benefit from seeing what it is like to become as helpless as your mother, and also how to manage her care. I am taking photos daily of my husband who is in a similar phase and also just entered a hospice program. These days are precious to me, as I'm sure they are for you, and even the act of recording them is a kind of special, even spiritual thing to do. My heart goes out to you.

Doris

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Bay Area, CA


Sun Apr 04, 2010 10:19 pm
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Joined: Sun Mar 14, 2010 1:11 am
Posts: 20
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Doris wrote:
Kim,

I'm so glad to hear that you are making a video record of your mother during these difficult days. Many people will benefit from seeing what it is like to become as helpless as your mother, and also how to manage her care. I am taking photos daily of my husband who is in a similar phase and also just entered a hospice program. These days are precious to me, as I'm sure they are for you, and even the act of recording them is a kind of special, even spiritual thing to do. My heart goes out to you.

Doris
Thank you Doris, I know I have posted in the wrong place again but I never got the chance to write anything in the Introduction post so I thought Id try it again, sorry everyone for the double posting but I am still learning how to use a Forum and a computor. I hope you wil keep me posted about your Mother Doris, and I also wanted to tell you that the person that I care for is my Aunt, she is my Moms sister. Thanks again for your kind words.
Kim


Sun Apr 04, 2010 10:50 pm
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Joined: Sun Mar 14, 2010 1:11 am
Posts: 20
Post Sorry
robin wrote:
Hi Kim,

You posted an introduction to yourself and your aunt here -- http://community.lbda.org/forum/viewtopic.php?p=16851 -- and some of us already welcomed you. Welcome again!

Robin
:roll: Im sorry ..I am still learning the computor as well as the forum. So where can I go to vent? My heart is hurting over all of this LBD monster. Thanks.
Kim


Sun Apr 04, 2010 10:52 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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Kim,
It seems that you've figured out the Forum well enough to post in the "Welcome to the Forums" area and the "Introductions" area, and to post replies as well. I'm not sure what more you have to figure out.
Robin


Sun Apr 04, 2010 11:48 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post The Chat Room is a good place to vent
To get there, start from the LBDA Home. Go to the "Online Community" tab as if you were going to the Discussion Forum. Instead of the forum, click on "Enter the LBD Chat Room". On the next screen that comes up, click on "Enter the LBDA's Chat Room". You will get the Lewy Body Dementia Chat Service. Put in your Username (the one you sign on with). If there is a space for a password, ignore it. No password needed. Hit Login and you are on.

There may be nobody else there. If so, you can wait awhile or signout and come back another time. Good times seem to be the evenings. It's nice to chat with others in a more immediate way. Good luck, Kim.


Mon Apr 05, 2010 12:02 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
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Hi again Kim - hope to catch up with you on the chat, maybe tonight. I'll probably be on about 9. There are usually a few people on then as well. Also, you can send people a private message by hitting the PM button, and that way if there is someone in particular you want to communicate with privately, or schedule a certain time for chat, you can do that too! Talk with you later, Lynn


Mon Apr 05, 2010 5:35 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Re-Hi Kim,
Glad you found your way back to the forums, I am sorry your Aunt has had decline with her LBD, I know this is hard for you caring for with your MS, I am glad you have the support of the family it really does mean a great deal.

We occasionally have some rude comments here but don't let it stop you from coming here for the support , there just is too much information to pass up on.

If you have a specific comment try to go to those areas because you will have more eyes looking and more answers to your questions and comments than the welcome area but post where YOU are comfortable!

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Irene Selak


Mon Apr 05, 2010 9:21 pm
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Joined: Sun Mar 14, 2010 1:11 am
Posts: 20
Post 
irene selak wrote:
Re-Hi Kim,
Glad you found your way back to the forums, I am sorry your Aunt has had decline with her LBD, I know this is hard for you caring for with your MS, I am glad you have the support of the family it really does mean a great deal.

We occasionally have some rude comments here but don't let it stop you from coming here for the support , there just is too much information to pass up on.

If you have a specific comment try to go to those areas because you will have more eyes looking and more answers to your questions and comments than the welcome area but post where YOU are comfortable!


:) Thanks Irene for the answer I was looking for ...you have been a great help to me here on this LBDA forum. Talk soon! xoxo


Mon Apr 05, 2010 9:42 pm
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