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 The "Encyclopedia" of your LO 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post The "Encyclopedia" of your LO
For at least two years, I've been intending to sit down and put together a notebook and folder of everything someone should know about Jerome, his condition, the doctors, meds, family phone numbers, important financial and bill information, etc. Essentially, a handbook on Jerome in the event something happens to me unexpectedly. I just keep putting it off.

Last January, I had to go to the ER when we were out of town because I was having heart attack symptoms. Before my niece took me there, I realized that if something happened, NOBODY knew how to take care of Jerome. I started jotting notes as she was pushing me and my crushingly painful left arm out the door. I swore then that the minute we were back home, I would put this notebook or binder together.

But, still, no Jerome Book. Has anyone else put one together for your LO, and if so do you have an outline the rest of us could use? Have you had an experience where someone did not have access to some crucial info they needed about your LO when you weren't available?

Thanks!

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Renata (and Jerome-in-Heaven)


Wed Dec 10, 2008 2:52 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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I don't have a formal booklet but I do have a couple of items- 1 is a folder I keep all the medical info in. -test results , copies of Doctor's reports and now a note to contact her pain management doctor- he is the 1 that agreed to help us keep an eye on everything. I have him copied on everything as well as her primary care doctor.
The second is a looseleaf notebook I write notes in, info on her meds and other needed info. I actually started this when I had someone taking care of her while I worked. It's not everything but would give someone a reasonable guide if needed.
Sharon

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syt


Wed Dec 10, 2008 8:38 am
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Joined: Fri May 11, 2007 12:54 pm
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Dear Renata and Jerome,

I started keeping a journal at the onset of my mother-in-law's initial diagnosis of "just a touch of Alzheimer's". I wrote down everything I could remember that happened that day, especially reactions to new situations and med changes. I tried to keep track of her hallucinations and delusions and what triggered them or made them worse. I kept this notebook journal in a bigger binder that had a zipper around it. Inside of this I kept an updated list of her doctors, her medications, copies of her medical cards, living will, articles I found in newspapers and magazines regarding her disease, dates and times of doctor visits and notes on them, and caregiving. I also kept the Alzheimer's Association Safe Return information as well as a current photo of mom in this binder. It became the Lewy Bible. I told all family members what it was and where it was.
Everyone was welcome to view it, but I warned them that they might not like what they read because it was also a venting spot for my feelings and thoughts. Then every once in a while I would write out what a typical day was for us including times for everything from getting showered to arts and crafts. I too would panic when I left the house for fear that no one would be able to keep mom safe, happy, and unafraid. I hoped that this "Bible" would be enough for anyone who cared to come in and be able to pick up where I left off. We used to laugh that it was like keeping a babybook, but instead of baby's first tooth or haircut, it contained mom's first try on Namenda or what time of day would the babies start running around the bed. Both books included when sweetie pie slept thru the night. (HA!HA!) I know this might sound a little excessive, but I always remembered what my 9th grade Biology teacher taught us. Be prepared to take copious notes to pass this class or any class in college. Unfortunately, Lewy Body Disease wasn't a class I signed up for, but arming myself with as much information as I could might help mom and me "pass" for one more day. I hope this helps.

Love,
Joyce K

P.S.- Did you sign Jerome up with Safe Return. I signed mom up with it and kept it updated even though she couldn't walk on her own to wander, but I felt better knowing I had the caregiver necklace and ID card with me at all times to let emergency people know I was the sole caregiver for my mother-in-law.


Wed Dec 10, 2008 9:58 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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I started a "sort of" diary when this all started because the doctors would ask when things happened and I found the days just run all together. I could never find that there was a pattern to any of the behavior, so I gave up on that. Just live today and readjust as necessary. Gerry


Wed Dec 10, 2008 7:15 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Great ideas, all! Thank you!

Manymoons -- if there are no notes to call or any contact info for them in your Dear One Book, the progeny will never even have to know! :lol:

I have all the "technical stuff" collected -- I keep updated med lists on my computer every time anything is changed. I have a list of doctors. I have some Lewy articles.

I'm talking about more of a "care and feeding" book, or ''owner's manual" that would be the repository of the info that I carry around in my head about Jerome's specific needs, likes, dislikes, fears, that he can't see to cut his food, that he likes Vernor's ginger ale, he'll eat ice cream any time if you can't get him to eat or drink anything else, what specific help he needs in the bathroom, the numbers and order in which to call people should anything happen to me -- or should anything happen to Jerome, what sounds he likes, what sounds are really anxiety-provoking, etc. And that they should log onto lbda.org and get onto this forum immediately for information or advice.

All that personal stuff that we don't even think about because we know it and live it each day without even thinking, but which really are central to our LO's quality of life in Lewyland, and would be even more critical for their sense of safety, security and continuity if something happened to us.

Joyce, thanks for the info on Safe Return -- I only thought of it in terms of Jerome leaving the house or wandering, and he has never shown any inclination to do either,. I never thought about what I would have on me in case of an accident or such that would let others know that my dear Jerome is back home or elsewhere and he needs immediate attention. I will look into Safe Return immediately!

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Renata (and Jerome-in-Heaven)


Wed Dec 10, 2008 11:54 pm
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Joined: Fri Feb 29, 2008 7:02 am
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Location: MI
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The pink notebook I had is I think similar to what you're thinking of. It contains a lot of notes if someone other than me is taking care of her. You may want to print the med list and keep it in the front of the notebook. The reason I use a looseleaf notebook is the ease of uptaking it.
Sharon

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syt


Thu Dec 11, 2008 1:17 pm
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