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 New from Kentucky with Aunt 500 miles away--probable LBD 
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Joined: Wed Mar 27, 2013 9:42 pm
Posts: 18
Location: Lexington, KY
Post New from Kentucky with Aunt 500 miles away--probable LBD
Hi, all. I posted my aunt's story in another part of the forum but realize this is where I should have started. I've already gotten some great support on that part of the forum, but here is my official looooong intro:

I have an aunt who lives 500 miles away. For the past two years we have seen her increasingly struggle to find the right words in conversation. In the past 6 months, I've seen a drastic change. It would be difficult for anyone who does not know her to follow her conversation at this point. She uses words and phrases she's always used but almost like place holders in conversation. For example, "Hey, Auntie! How are you doing?" "Well, you know its just a little here where and everywhere, but what are you going to do about it?"

My uncle is 82 and is a real spitfire. Caretaking does not fit his skill set, but, increasingly, that is what he is doing. He is having to prepare the meals, and handle all of the business about the house and their rental properties. She is no longer really able to participate in the way she did. Most concerning is that she now sees people who aren't there. I don't know how long this went on before I was told about it. The people aren't scary, but she keeps going on and on about how they could have gotten in. She has blocked off her closet because they can get in there, and she has rearranged parts of their small house because of the people.

After much reading on the topic of dementia, I found the description of LBD, and other than the difficulties with movement, she fits the description to the letter. I've convinced them to see a neurologist so she can be diagnosed, and they were supposed to go on May 1. This past week, during my children's spring break, we traveled to their house to visit, see her and the situation first hand, and give my uncle a break. We arrived at their home Saturday night, and they were so excited to see us, especially my children. Although she had lots of trouble with recalling words and even names, her personality was still quite the same. And her movement is great! We had a nice several hours together, and then I took my children to my in-laws' house, about an hour away.

I had a long visit on Sunday and was able to get a much better picture of their daily routines and her thoughts and behavior throughout the day. I went back to my in-laws' house that nights and typed about 2 pages of notes on everything she noticed, I noticed, and my uncle noticed. She was relieved I was typing notes to take to the doctor, because she had been so nervous about having to answer all of the doctor's questions. Although most people wouldn't be able to make sense of what she says, I could follow her really well. She knows what she wants to say most of the time but can't find the words to match her thoughts. She said "it just hammers you and hammers you and I don't like that." She meant that doctors' questions overwhelmed her.

The next morning was Monday. I live so far away and wanted to make sure the notes made it into her file, so I decided to just drop by the neurologist's office. I asked if they happened to have any cancelations, and of course they didn't. I told them I was trying to help from 500 miles away, was leaving to go home on Wednesday, and that I'd typed notes about my aunt. I said, "I don't mean to sound desperate, but I'm kind of desperate. I really want to make sure this is all coordinated. My aunt listens to me, and I'm nervous about how this is going to go when I'm not here." The incredibly kind receptionist asked me to sit down and walked away with my notes. She took them to the neurologist who read them on the spot. She came back about 10 minutes later and told me that he would see my aunt the next morning! I cried and hugged her. I went to my aunt's house, told them the news, and they both cried. We all cried!

She was feeling good, so we went out to lunch at a deli. I figured out during lunch that she doesn't mind the salad bar, because she can choose what she wants without having to put it into words. Why didn't I think of that before?! She hasn't wanted to go out to eat, but I think this will be a good routine to get out a little. She smiled and laughed and had a great time. She even told a cute story about when she had taken my children to that restaurant years ago. What a wonderful change!

When we went back to their house, I read all of my notes to them. I wanted them both to know everything I said. They were both really happy with the notes and thought they covered everything. My uncle then got out of the house for about 6 hours for a much-needed respite. He came back with a pizza for us to eat. Now, when things are as bad as they are in this situation, you just have to find the humor, right? So, here is one spot of that: They both put their pieces of pizza on plates, and we all sat down at the table. They then pulled out a bottle of Taco Bell taco sauce. My uncle poured taco sauce ALL OVER each slice. You couldn't see a bit of the top of the pizza from crust to corner. He passed it to her, and she did the same, and then they ate their pizza with spoons. I felt like I was in the Twilight Zone. I am worried about their nutrition and am working on that, but hey, you have to laugh sometimes:)

The next day, I picked up my aunt and uncle to go to the neurologist. We had to wait a while, which is hard for her. She wanted me to go back with them to meet the neuro, so I did. He was an incredibly patient, kind, and caring man in probably his late 60s or early 70s. He's tall and slender with bushy, white eyebrows, disheveled wavy white hair, and a kind face. I guess he saw the desperation in my face, because he arranged a full workup, including MRI and bloodwork that same morning. She had a cognitive exam (scored 19/30 on the MMSE), we completed assessments on her function, and then we drove to the buildings for the MRI and bloodwork. Until this past Tuesday, she would not tell any doctor that she was experiencing trouble finding words or hallucinations. I convinced her that it was important to fully inform her doctor so he could be of the most help. The cognitive decline would have been clear, but she brought up the hallucinations herself. He wasn't sure what she was saying, and I told him that she had been experiencing hallucinations and that was what she was telling him about.

Before we left on Tuesday, he prescribed Exelon patches in the lowest dose for the first month, and the middle does for the second month. My uncle had some difficulty getting her to use the patch the first day, but he managed. He said to her, "Now there may be a lot of things we can't do, but this is one that we can." She agreed and between the two of us telling her how important it is, she has thankfully continued.

The results of the MRI and bloodwork came back normal today. So, that's where we are. It turns out that their business affairs are not in order, and that is something we will address next. We talked about it, and they agree the importance of it. They understand power of attorney types now and agree that it is important to get that set up. I'm just waiting on the doctor to review everything, give an official diagnosis, and tell me whether she still has the capacity to sign for herself. I believe she does now that I've talked with her for 4 days. She definitely understands everything everyone says. But things have been slipping fast over the past 6 months. I hope the medication helps to slow that.

Thank you again! Being able to gush to a discussion board is amazingly cathartic.

Sat Apr 06, 2013 12:38 am
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Joined: Fri Apr 05, 2013 6:19 pm
Posts: 19
Location: Maryland
Post Re: New from Kentucky with Aunt 500 miles away--probable LBD
Hi Jung,

My sister and I did the same thing as far as taking notes. Towards the end of my mom's illness, for some reason, I just started writing down bits of our conversations. Even though it's been a little over a year since she passed away, sometimes I still read our conversations and it just puts a smile on my face. I just wish I would have bought a tape recorder to record her voice. It may sound crazy but I still have my mom's cell phone number in my phone, I just can't seem to delete it. My sister actually managed to find a voice message my mom left before she even became ill. She forwarded the voicemail to me, and to be able to hear my mom's voice is indescribable. I wish you and your family the best in caring for your aunt. {{{hugs 2 u 2}}}

My mom (83 years old) was diagnosed with LBD and Vascular Dementia. She passed away in February of 2012.

Sat Apr 06, 2013 1:31 am

Joined: Wed Mar 27, 2013 9:42 pm
Posts: 18
Location: Lexington, KY
Post Re: New from Kentucky with Aunt 500 miles away--probable LBD
Thank you so much. What a great idea. Almost a diary you kept. I think I will do that. I paused last night thinking about Auntie, and she has changed so much that I had to work to remember how she was before. I don't want to lose those wonderful memories of her, and a diary can help with that. Thank you for the great suggestion.

Sat Apr 06, 2013 9:40 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: New from Kentucky with Aunt 500 miles away--probable LBD
Both writing things down and recording things are great suggestions that will be treasured later, I am sure.
Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Tue May 14, 2013 8:54 pm
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