I am organizing a local seminar/workshop for early stage LBD, Alzheimer's, and Parkinson's caregivers that will be given free of charge as a service to the community.

There are several folks currently working in the field who will be putting it on together as a team. So far we have a speech therapist, physical therapist, occupational therapist, a nursing home activity director who is familiar with early stage dementia, nursing home director, and the owner of a continuing care retirement community who is using innovative ideas and very reasonable pricing that I believe is a national model.

Can any of you add who you might want to hear from in such a workshop? Are there questions you would want answered or issues you would want to be addressed? Your responses will help us to provide more helpful information to the caregivers who come.

Thanks,
Pat

How about some general resources or items that have helped as the disease progresses? I know that we got a dog to help Ted go for walks. Then, when things progressed from the cane (and there are different types of canes), we had been issued a rollator. That's been a lifesaver and is still used in the Nursing home. Also, we found some common items that work for when you lose your fine-fingered skills, like a large-barreled pen for writing, the adaptive spoons, and also the sports wrist bands (like for tennis) that we used for when the drooling was really bad. I also found golf towels pretty useful since they have their own hook. I could clip it to his wheelchair instead of it dropping off, and one was even monogrammed with his name. These are so easy to drape over the shoulder and to wash. I also used a couple of special pillows to help prop Ted up in his bed and to help with his sleep apnea AND for use in his chair for his "bad" side lean. I also used the Wii games to entice Ted to do some exercises like the bowling game or even just the basic fitness. The Wii balance board was a little small, so we moved on to the Kinect. Even when he could no longer stand, he'd do things from his chair.

That might be part of what the physical therapist is already doing, I guess?

Another category of information is estate planning, POA, Health care directives, paying for the care, etc.

Pat...where and when is this going to be...??? Carol

How to find a good neurologist who understands the disease and its ramifications.

It's wonderful that you would put this together. I would like to hear how one handles denial and resentment in the patient. Also the tendency of the patient to be jealous of the caregiver's good health, especially when there is a big age difference between the patient and his/her caregiver spouse. I know only God knows how many breaths we will take, but statistically speaking, much younger wives will outlive their husbands. I understand that, but never did I consider that my husband would lose his mind long before. He can't help but to be resentful that I'm not having the same problems. I hope it's part of his early grieving process and that it doesn't prevail in the months or years ahead.

I think a question that comes up in the beginning is what the "stages" of LBD are, and related to that, how to predict longevity and get a prognosis. It would be helpful for early stage CGs to hear that the stages are unpredictable and so are longevity and the prognosis. People naturally want to know what to expect, and maybe it would help the CGs to understand that LBD is just not a predictable disease. I had to figure it out on my own and wish someone had just set me straight at the outset.

Julianne

Ah, Julianne, good addition! That is what every new member to our caregivers group wants to know!

These are all good ideas to include! Thank you for all your thoughts. If anyone can think of anything else, it will be very helpful in setting up a more useful program.

Jean, what kind of pillow did you use for propping Ted up? Does it have a name so we can find one to show folks? I could use that right now with John.

Carol, we have not yet chosen a time, but we do already have a venue. It will be in the community house of the retirement village here in Rutherford County, between Charlotte and Asheville. It will accommodate about 50 people and we may do multiple seminars with each one featuring a couple of the issues for caregivers. We have to plan exactly how we will format it all to be most effective and to allow for questions of the participants (thus the smaller group size).

I can post more details once we have them. This is the beginning stage of our planning. Carol, do you live in NC? If so, what town?

Pat

a few have already been mentioned but ill put in them and mine


the estate planning.. was huge thing for me..as he hadn't retired yet..

ideas to handle, the no more driving situation..

be prepared for the hallucinations, scared me silly, the first time on a train !!!

let them know about online forum's.. i would've never made it, with out this place and wonderful people!!

good books to read, to help you understand what might be in store..yours included.

a list of what to ask the doc.. and not to be afraid to look for another doc, if you are not comfortable.

remind them to take care of themselves, too.. how important that is...

the list of scary meds for lbd

gads i could go on and on.. the more i learn, the more i feel better prepared... there are still surprises, for sure.. but i feel like when i'm prepared, i handle things better.. and i am calmer.. which is good ,for both of us..

thank you pat for all you are doing!!!

Everybody, please do "go on and on"!! Your lists are all helpful.

I am reading every book I can get my hands on about LBD so I can be more equipped to make helpful suggestions depending on what folks may ask about or be dealing with in their own situations. (Funny how I could not stand to read much of anything about it at first. I guess I have finally come out of my "cave" at last.) If anybody wants to give me a list of the really helpful books here, I would greatly appreciate knowing the ones that have helped you most, so I can share your lists with other new caregivers. I plan to tell everyone that all of you who share your ideas are part of this seminar project.

And doing this is a blessing for me. I feel like I am fighting the LBD monster wherever I can find him. I want him shrunken, weaker, and finally totally dead so he cannot hurt another living soul. I want caregivers to be informed and more equipped to overcome the symptoms and to help their loved ones in every area they possibly can for as long as they can.

Thank you all again for sharing your thoughts. Book lists?

Definitely the Whitworth's "Caregivers Guide to Lewy Body Dementia"
is the best book I've read so far. It answered so many questions and is full of information.
Ellen

I would recommend Dr. Thomas Graboys' Life in the Balance, a cardiologist's frank chronicle of his own LBD experience. His story paralleled my husband's very closely. Wish I had read it sooner but, then, we didn't really know what we were dealing with, initially.

Pat...I live in Pawleys Island, South Carolina. We frequently travel up to the Concord/Salisbury area where my husband grew up. In fact he has a 60 yr high school reunion in early September, I hope he will be able to attend.

I think it is great what you are doing. I was also asked to give a training to the caregiver organization that I use "Right @ Home" for their caregivers. I am doing it the end of June and have put together a short "primer" on dementia and the differences of AZ and LBD and PD. It also includes some techniques to use with behavior issues and movement issues. I will email you a copy of this if you would like, and I also would welcome feedback.

I think one of the things that is important early on, in addition to all of the great ideas that have been given....is the value of exercise, even walking, some of the chair exercises I got from the Parkinsons foundation....in all of the material I have read about all dementias is that exercise is the best medicine especially in the early part of the disease. Carol

Carol, that would be great to receive what you have done! Wow, that is so helpful! Thanks!
I will look forward to receiving that email from you.

Concord is about a one and a half hour drive from here and Salisbury is 2 hrs. That is not so bad. If you are coming from Pawley's Island, I bet you take I85 and go thru Charlotte (one hr away from us). Turn off at Kings Mt. exit and you are 45 minutes from Forest City. I think I can even get you here faster if you decide to come to our seminar.

Take care,
Pat