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Old 03-15-2016, 08:52 PM   #29
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Thanks!

Back again. I couldn't make it to the computer last night. I greatly appreciate the thoughtful and compassionate responses that you folks have posted to this thread. Maggie: no hard feelings. I could have done a much better job of laying the groundwork for my original posting. epperp: thanks for the book tip. "Yellow Rock" is on the way.
We are still enjoying concerts and restaurants. We also completed a 700 mile road trip last fall without a flurry. Wandering is confined to house and yard... but thanks to you who suggested GPS. That is a must and will get done. Only 1 in 6 dementia patients end up with serious wandering problems, but the peace of mind alone would make it worth it. I guess we are still in the zone where new experiences can be a part of our lives.
There is a lot of info out there on conventional travel (air, car, hotels, restaurants.) Health and safety are the priority for just about everybody - and rightly so. Locks on doors, cupboards, drawers. No loose floor coverings. Guard gates on stairs. Predictable food choices. All of that is important. Even essential. After a while, though, it starts to feel like a quasi-institutional environment and you wonder if it isn't actually accelerating the disease. To the contrary, there is mounting evidence that exercise, social encounters, art and music programs, etc. all seem to help people suffering from dementia. I recently read about a research project that found improved memory and cognition in patients who played video "driving games". One would not want a dementia patient driving, of course, but it seems clear that the unpredictability of real world experiences play a positive role in the lives of people with cognitive loss.
The thing about Alzheimer's is that it affects different people in different ways. It progresses at different rates in different individuals. The thing about an Airstream is that it is both home and hotel. All of the conventional advice gets muddied as a result. How does one plan even 6 months in advance? Anyway, all the above made me wonder if our Airstream (now in storage) wasn't an under-utilized resource in our battle with Alzheimer's.......why I reached out to you. Nothing can really trump experience! Thanks so much for being willing to share. Mike
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Old 03-16-2016, 04:59 AM   #30
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Thank you for the update Mike. Having taken care of my mother in the later years of her life with dementia, I can relate to what you are facing.

You seem to have the process well in hand, and your patient is lucky to have you this involved in his/her life. You seem to be asking the right questions, and your care and love is evident.

I think the main notion I would like to convey to you is this -- trust yourself.

Your patient is in good hands . . .

The path ahead will have challenges, but my sense is that you are up to them.

Trust . . .

Peter
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Old 03-16-2016, 07:10 AM   #31
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Most important is - don't be ashamed to take care of yourself, and to set reasonable limits on how much - and how long you are willing to do it. My sister did almost all of the caregiving with my mother, but mom did NOT live in Karen's home, she stayed in independent living apartments - where the staff provided activities, meals and alive and well checks. We were lucky that mom was a miser and had squirreled away enough money to live independently in her old age, though it nearly ran out in the end.

Karen also would call me to come and visit mom so that she and her family could take a vacation or even just a few days off.

If you have siblings who are letting you carry it all - ask for help or even demand it. Also get some "adult day care" for your mom's sake and yours. And if you get a guilt trip from any brothers or sisters about having strangers caring for mom, pack her bags and drop her on their front porch for a week!
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Old 03-18-2016, 10:21 PM   #32
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Peter, Foiled again: thanks for the support! Will certainly work on those things.
It looks like this thread has pretty much run its course, so I will be requesting closure after I post this. Thanks to everyone who put in their bit. Happy travels to you all. Mike
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Old 03-19-2016, 08:42 AM   #33
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And to you also, Mike, and your patient. Thanks for an insightful thread.

Happy Trails indeed!
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