I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about my weekend of Advocacy Training. There is something in it for everyone (I hope). Serious legislative information, advice for ordinary, busy caregivers who want to raise awareness of AD, links to pending Alzheimer's legislation, and of course, a bit of humor.
Please post comments here, including opinions on the legislation, if you have chosen to read those particular links.
Thanks for the update. I appreciate your attending meetings and telling us about them -- almost as good as being there ourselves!
I'm interest in the POLST legislation. In your comments you said the POLST form was legally enforceable. I read the materials you mentioned and it looks as if it might be valid only in Washington state where physician assisted death with dignity is also legal. Is that right?
I definitely don't want to get into either a political or religious discussion here, but I am going to say that my husband has always been a strong advocate of being able to die as he wishes and he is very concerned that our Advanced Directives and DNR orders will not be followed by EMTS, doctors, or hospitals.
I would appreciate any additional information you or anyone else has. I'll put my email in my profile.
Regarding POLST, it is CURRENTLY a State by State law. The Alzheimer's Association "supports the adoption by all stages of POLST programs." States with laws governing POLST programs include: California, Idaho, New York, North Carolina, Tennessee, Washington, and West Virginia. To determine the status of POLST in your state, visit www.polst.org. The program may be called other names in other states. For example, New York's program is MOLST - Medical Orders for Life-Sustaining Treatment).
I read a lot, but don't post too often. I did want to comment on Joan's blog today. All of the information she presented is important. Speaking in front of crowds would freak me out, but I DO tell anyone who asks how my dh is that AD is a fatal brain disease. Most are very surprised. It's the little bit I can do to raise awareness. Anyone who has family in a state other than the one you live in should pay close attention to that UAGPPJA law Joan mentioned.
Thanks to Joan, I will be taking a trip to the city hall in South Carolina soon to relieve some stress....things like that are really great to know.. I would never think of beating my wife at al, but since it is legal in SC, and she is quite frustrating,it might be worth the 10 hour trip...and I would be upholding the law as a law abiding citien.
If I want to try to give somebody the condensed version of what it’s like to live with a spouse with dementia, what would you think would be the one or two ideas that it would be most important to tell them? Usually I could talk to somebody about this until their ears fall off, but just to give somebody a little insight into what this is like, what would you say? I know it would depend on who the “audience” is, but maybe there’s a consensus out there as to what the most important things are.
P.S. I did once speak in front of a crowd about this, and it was very, very hard, especially since just about the only person I talk to every day is DH. But if we don’t tell people what this is like, how will they know?
That's a really good question. Maybe a good way to explain it would be the "developmental stages" explanation. Our children go through all the developmental stages - infant/total dependency; toddler/the "me" stage with no reasoning ability; child, teenager, young adult, adult. The AD patient goes through all of the developmental stages again, but backwards. Including the physical, mental, emotional, and cognitive abilities that go with each stage.