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 I'm new. Looking to share my story and give/receive support. 
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Joined: Wed Mar 27, 2013 9:42 pm
Posts: 18
Location: Lexington, KY
Post I'm new. Looking to share my story and give/receive support.
Hello, all! I am new to the forum and have been reading for a while.

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. I thought she was doing it to irritate me--make sure I was listening to her and willing to help. Boy do i feel bad about that assumption now! It would be difficult for anyone who does not know her to follow her conversation at this point. It's funny, 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. And when it's in my throat and I have to do those 16, what do you call those?" Well, you get the idea.

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 fully. 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. She won't tell any doctor that she is experiencing cognitive decline or hallucinations. And it looks like my uncle might be too nervous to share what has been happening, too. He doesn't want to upset her.

I've convenced them to see a neurologist so she can be diagnosed, and they go on May 1. She received a lot of paperwork to complete and found it completely distressing. It sure would be easier to help if they were closer, but he has rental properties that he doesn't want to sell--I think right now they are his excuse to escape the house. She has forgotten names of those very close to her several times lately--me, another neice, and her husband.

There is a lot to figure out. On my children's spring break, we are going to travel to their house and visit with her for a few days and see her and the situation for myself. If anyone has ideas for activities or routines or general dos and don'ts, that would be wonderful. THANK YOU FOR YOUR INPUT!!!> I'm enjoying reading all of your stories, too.


Last edited by Jung on Sat Mar 30, 2013 1:16 am, edited 3 times in total.



Thu Mar 28, 2013 2:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: I'm new. Looking to share my story and give/receive supp
Hi Lee Ann and welcome! That's really nice that you are willing to step up and take care of your aunt (and uncle). Have they given you (or anyone else) POA for business and health care in case you need to take over in your uncle's place? If he becomes unable to take care of paying their bills, making health care decisions, etc. someone will need to step in and help them out. Also, if you don't know about other legal issues like, do they have a will, do they have advanced directives, etc. I'd try to get that straightened out too. It sounds like it will be too late for your aunt to write an AD if she doesn't already have one.

And, since they are getting up there in years, he may not be able to handle the CGing at home once she becomes immobile and possibly for other reasons too. I'd help him check out facilities in case she needs to be moved at some point. Since it sounds like he is sort of in denial, at least a bit, your hand-holding and helping him with some very difficult stuff will be of immense aid to him.

Read as much as you can before you visit them - "forewarned is forearmed" and all that! Good luck - it's a long, hard road. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Mar 28, 2013 7:39 am
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Joined: Wed Mar 27, 2013 9:42 pm
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Location: Lexington, KY
Post Re: I'm new. Looking to share my story and give/receive supp
Lynn,

Thank you so much for your reply! We have not talked at all about POA or anything that might appear as preparing for anyone to pass away. I think he is in denial that he is 82 :lol:, but honestly that works well for him. He is so active and healthy. Unfortunately, I don't know how to bring up any of these topics. I'm afraid that something could happen to him, and nothing would be set up for me to help. They were like a second set of parents to me growing up, so I know what my responsibility is, but on the other hand, because they weren't my parents, we never have had those kinds of conversations. (I thought they had a will, but I've talked to another neice who thinks they did not finish that process.)

I wish I could find some things to do with her to keep her busy. She just sits all the time in the same spot and watches news channels, and worries. I was thinking of taking a couple of boxes of old photographs and having her to tell me stories about the photos while I arrange them in an album. She definitely remembers experiences and people well, even when she can't recall names. I'm just struggling with finding some things to keep her from sitting and worrying herself nuts.

Thank you for the reading suggestion, too! Is "forewarned is forearmed" a post, article, or a book?

THANK YOU, Lynn. It's mostly just nice to be able to "talk" about this to people who have experience.

Lee Ann


Last edited by Jung on Sat Mar 30, 2013 1:19 am, edited 1 time in total.



Thu Mar 28, 2013 9:32 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
Welcome to the forum! Hope you will find it as comforting as we all have. "Forewarned is forearmed" is, to my knowledge, just an old saying. It is very important that any legal issues are taken care of early on and that the family read and research as much as possible about the disease. The LBDA web site has lots of good information. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Mar 28, 2013 10:35 am
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Joined: Wed Mar 27, 2013 9:42 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
Well, I feel silly! Thanks for the clarification. I thought it was a particular read:)


Thu Mar 28, 2013 11:13 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: I'm new. Looking to share my story and give/receive supp
I wish it were a particular article or book you could read, but frankly, this forum is about the best thing I can think of to help you! There is so much experience, knowledge, helpful tips, and support - read, read, read!


I strongly believe that you need to have the POA and AD discussion ASAP. You can start out by saying something like "no one wants to talk about this, but it's very important that someone is able to take care of you and your affairs should something happen to you. I want to make sure that you/auntie/your bills whatever, are taken care of in the event that you get sick or disabled. Have you selected a POA yet? Do you both have ADs written? I am willing to help you with those things because if something does happen to you, auntie does not seem able to handle bill paying and other matters that you are currently taking care of." Something to that effect.... So you come across as sincere, helpful and really looking out for their future, which is, afterall, exactly what you are doing.

The legal matters just can't wait. He could suffer a debilitating stroke, have a fatal heart attack, whatever, and then what? How is that stuff going to get taken care of? It will be a huge legal issue and probably cost of ton of money, to say nothing of the time, to get it straightened out. Just read a few of the horror stories on this forum and you'll see what I mean.

Good luck, and keep us posted on how things are going. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Mar 28, 2013 4:28 pm
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Joined: Wed Mar 27, 2013 9:42 pm
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Location: Lexington, KY
Post Re: I'm new. Looking to share my story and give/receive supp
Wow, Lynn. It's not that it hasn't occurred to me, but I've been so focused on helping to facilitate a diagnosis. Thinking about this with them seems surreal. I just talked to my uncle, and he said she hasn't been able to put words together today. She did alright on the phone with me, though. Thank you for the direct information. I'm going to spend some time reading now that my kids are in bed. It's strange how when focused on the diagnosis problem I've sort of put the gravity of the situation out of my mind. Thank you, again. On to read now...


Thu Mar 28, 2013 9:44 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
Hope you get lots of reading done. And, if you are lucky, maybe they actually do have all the financial/legal stuff in order but you just don't know about it. We were very lucky that the day after my mom died, my dad took my sister and me to his attorney's, the bank and the investment co. and got everything taken care of so that if he died or became incapacitated all of this stuff would already be done. And, they'd both had ADs written since the 1970s. Some people aren't so lucky and to have to go to court to get guardianship and whatever they call it in various states in a long, drawn out process and very expensive from what I've heard.

Just a word of caution, trying to get a "correct" dx for your aunt may be very difficult, since a true dx can only be made on autopsy. Drs. just have to make the best guess they can based on symptoms observed and then make their best guess about meds. I spent a ton of energy and angst trying to get the "real" dx for my dad, and in the end, it didn't matter. There really wasn't much that could be done for him anyway and some of the meds made him worse. If your aunt is in later "stages" it may be that the disease will run its course and if you are lucky, there may be some meds that help reduce some of the symptoms for a period of time. People told me not to focus so much on this because it was probably a waste of time, and it turns out they were right in my dad's case.

Anyway, I wish you luck and hope you get lots of helpful info. before you get to your aunt & uncle's. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Mar 29, 2013 1:10 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
Jung,
Welcome to the LBDA forums, sorry I missed you for a few days. I am glad that your Aunt is set up for a Neuro visit and that you will soon be able to see them and I am sure once you do see them it will shed a different light on the situation and how bad it really is, its very hard to help elders when they still have a mindset of their things such as your Uncles rental properties but at some point it will have to be dealt with. You will know more once you get there and see it up close!
Good Luck !

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Irene Selak


Fri Mar 29, 2013 9:32 pm
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Location: Lexington, KY
Post Re: I'm new. Looking to share my story and give/receive supp
Thank you all so much. Lots of traffic but we are at our halfway point for the night. More travel tomorrow. Thank you for your posts and for your many others I've learned from this week. Yawn. Hopefully to sleep now.


Sat Mar 30, 2013 1:25 am
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Post Re: I'm new. Looking to share my story and give/receive supp
Hi, all. Thank you again for all of your suggestions and for listening before I left. I just returned home. It was an exceedingly productive 4 days.

The trip to their house took MUCH longer than usual--we got stuck in the spring break traffic. But then we arrived at their home, 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! It makes me second guess my initial idea of LBD, because she gets around so well. 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 Monday 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 night 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 going to the doctor. It's funny, 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 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 the 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, and my aunt will listen to me. 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. 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, so I did. The neuro was awesome. He's 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, we completed assessments on her function, and then we drove to the buildings for the MRI and bloodwork. We get the results back tomorrow. Before we left, he prescribed Exelon patches in the lowest dose for the first month, and the middle does for the second month. She is terrible at following through with medication--doesn't take any. So I asked the doctor what improvement she could expect. He indicated that she might not notice improvement, but that it was still important to take the medication because it could help her memory problems from getting worse. My uncle had some difficulty getting her to do it today, but he managed.

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 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. We'll see...

Thank you all again for listening! If you have time, I have a couple of questions. What does a 19/30 on the cognitive screen mean? I've done some reading of journal articles, but I'd like to hear from a family member. Second, have you all seen any negative side effects of Exelon? Did you see any improvement at all with it? If so, when? Finally, did you all set up separate health care and durable powers of attorney or one document to cover everything? I am going to try to locate an attorney who specializes in elder care documents. I'm also going to research senior living communities here in my city to give them some options. I know I have so much to learn.

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


Wed Apr 03, 2013 10:58 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
Oh, and Lynn, I used the wording you gave me in your earlier post. THANK YOU!!!


Wed Apr 03, 2013 11:04 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
Hi and so glad you got such great help here! You sound like you've done an impressive job in such a very short time. It is very tough.

The 19/30 is very likely her Mini-Mental State Exam score (MMSE), one of the most widely used assessments for general cognition. The maximum possible score is 30; a score of 19 would suggest mild-to-moderate cognitive impairment, depending a little on her previous level of functioning (for a highly educated, high functioning person, even a drop to 25 might suggest some real changes, whereas someone who had some lifelong cognitive issues might not have dropped as much.)

My folks did the AD and POA and other stuff before there were real problems. We were able to get some additional oddments of paperwork signed appropriately by my mom even after she had quite noticeably declined, because she was able to make it clear to the lawyer and to the notary that she knew what she wanted, and my dad was supportive. Very glad we did as she has now declined precipitously in the last few months, and yet there is no question for us or doctors or others about who can help them and who is authorized to do stuff.

It's also really important that I have HIPAA authorization to speak with doctors and other caregivers. My dad is still fairly cognitively intact at 97 but he gets very stressed and has far less medical knowledge than I do. So I go with him to all appointments and I communicate with the doctors in between. Hard to do from 500 miles away, of course!

Hoping that your aunt will respond well to treatment and that they will do ok, and that your timely help will save much grief down the line. Good luck -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Apr 03, 2013 11:40 pm
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Post Re: I'm new. Looking to share my story and give/receive supp
THANK YOU, Laurel and Irene! I appreciate your thoughts. Yes, the rental properties are great income, but also quite the barrier to moving. I also hope that the earlier appointment is helpful in buying us the time we need to get all of the paperwork in order. What you describe, Laurel, about the stress with appointments is exactly how both my aunt and uncle feel--my aunt because of word retrieval, and my uncle because she has always managed those types of things. Thanks again for listening.


Thu Apr 04, 2013 12:31 am
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Post Re: I'm new. Looking to share my story and give/receive supp
That's amazing, and very uplifting, to hear about the responsiveness of the neurologist! Wow - were you lucky! Sounds like you got a lot done, and happy to have helped.

The atty. can advise what exactly is needed for legal documents. Personally, I've never heard of medical and durable POAs being combined. I'd venture a guess that in most, if not all, states, these are 2 entirely separate documents since they exist for very different reasons.

Come back often if you need further info. and/or support, and read, read, read! You may run across something you haven't anticipated that could help you from being blindsided by all the things that CGs encounter. Good luck! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Apr 04, 2013 2:34 pm
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