Knight and Day

Three movies in eight days?? Who would have believed it. I guess we are in "summer" mind mode.

This was another fun movie - completely unrealistic, but fun. As my son Ray said: "Even the original James Bond movies were more believable than this." An action comedy, the first half was more fun than the last, but I liked all of it.

These totally fun movies are good for my psyche.

HIPAA Headaches

True story (in a nutshell): My friend in Washington has a daughter who lives here in Utah. The daughter's husband is serving in Iraq. A few months ago the daughter was found unconscious in her home and taken to the hospital. My friend immediately flew to Utah to help. She arrived at the hospital and no one would give her the time of day because she was not listed on any HIPAA disclosure forms (the daughter was unconscious when admitted). After several hours my friend prevailed on the doctor to at least listen to her (the mom) so she could give him some very necessary health information about her daughter, whether or not he would share any info with the mom. It was a nightmare. When the daughter regained consciousness, it was all worked out. But there was a very long time before that happened.

I'm not here to debate the good and bad sides of our HIPAA laws. I just want to make the point that it is absolutely necessary to make sure that you have everyone listed on your HIPAA disclosure forms that might need your information.

Because of my friend's experience I decided we need to make sure my parents' info is all up to date. I made a list of each of my parents' doctors and wrote a letter to each of them requesting their spouse and children (listed by name) be on their individual HIPAA disclosure forms, and that that information be placed in their individual charts immediately. (I had asked a couple of doctor's offices what information was necessary and we made sure to include it all.)

The last time I was at my parents', I had them sign all the letters and we mailed them off. Despite frequent reminders, my parents never remembered to do this when they were in the doctor's office, so the letters were a good answer. I repeatedly explained why we were doing this, and my parents agreed that it was a good idea.

Then I was driving with my mom and she said, "I don't really think you need to worry about all this. You used to go to our doctor. I'm sure he will just tell you anything you want to know because he knows you." I explained once again the HIPAA laws and the fact that they can't even tell my dad anything without her permission. She was shocked and said the laws are ridiculous.

But the laws are what they are, and we are taking the necessary steps to make sure we can all be informed in case of an emergency - or other need.

Still Alice by Lisa Genova

I read about this book on the gab blog a month or so ago. It is about a woman who has Early Onset Alzheimer's (getting Alzheimer's younger than about 60 or 65 is early onset). I did not think I would be able to read it - I'm still too emotional about the whole thing.

Then my cousin, who knows my mom has Alzheimer's, recommended this book. I requested it from the library, thinking that once it came I would decide if I could read it or not.

Well, it arrived in record time. I had secretly hoped that it would be on the request list for a long time, but that didn't happen. I still left it on my nightstand, putting off the decision while I finished a couple of books with closer due dates.

I finally started the book, thinking "I can always put it down and stop reading it." I was immediately drawn into the book. The first half was intriguing. I really liked how Genova portrayed the mental changes of Alzheimer's, as well as the anxiety and anguish of the family dealing with all the aspects (one thing I've learned in all my reading is that Early Onset can be genetic. Regular Alzheimer's is pretty much a crap shoot on who gets it.)

The second half I was an emotional basket case the whole time I read it. I could see behaviors my mom is starting to have. I cried and cried and read deep into the night so I could finish it. I could not put the book down. That said, I'm still very glad I read it. I think I want my siblings to read it. I don't think my parents should read it. I think if Alzheimer's is not too close for you, you should read it.

Gathering Information

I believe in being informed. I've been doing some reading on Alzheimer's over the last several months.

100 Questions & Answers About Alzheimer's Disease

by

Thomas M. Wisniewski, MD and Marcin Sadowskim, MD, PhD

This book is pretty factual about how the disease occurs, and tests they can do to try and nail down whether a patient really has Alzheimer's. It also includes behavioral expectations, progression of the disease, and some suggestions on how best to deal with the disease as a care giver. It was a good way to gather over all information - a great place to start in my quest for knowledge.

The 36-Hour Day

by

Nancy L. Mace, MA and Peter V. Rabins, MD, MPH

I have not yet finished this book. I read it in fits and starts. It is a great practical application book - it really deals with the day to day nuts and bolts of living with Alzheimer's, both as a patient and care giver. It is easy to read, and puts a not very emotional spin on the whole thing, yet still acknowledging that at times the whole process is very emotional. I like it.

If you know of any other good information/literature about this, please let me know.

The A-Word

That's what my parents call it. Alzheimer's.

Last September my mom was diagnosed with Alzheimer's. She wouldn't talk about it. My dad told my sister, who told me and my siblings. She found out a month before she turned 80.

At first I was in shock. Then I was angry--it seems so unfair. A brilliant, wonderful woman afflicted with this disease. I cried. A lot.

When I thought about it, which was often, I found myself holding my breath and I had to tell myself to breathe. I felt helpless, and more than a little guilty that I had moved here (I lived only a mile away from my parents in Washington) and left my sister alone there to be the go-to person in this mess.

I've run the gamut of emotions over the last nine months. At first I was a little angry at my mom for not telling me she had Alzheimer's. I went there in November to be at her appointment with her neurologist. She still hadn't said a word to me about it then. I sometimes wondered when she would have told me. Last weekend she told my youngest sister "I thought you might want to know that I have Alzheimer's" (my sister already knew, and my mom had spoken to her about it in November).

As I reflect back over the last couple of years, I see signs that we didn't notice then. Some things are just things that happen with aging. These were different things. Each time I go back I see more progression of the disease. One positive note: she is now talking about it without being defensive herself. It makes life a lot easier for all of us to openly talk with her. It's been hard for me. I can't imagine how excruciating it has been for her and my dad.

I've been reading about Alzheimer's, trying to gather as much information as possible. I like to be well armed. Now comes the learning about and dealing with the real life battles of every day and everyday living with this disease.

The purpose of my visits back to Washington now usually include something that has to do with this new aspect of our lives. Doctor appointments, meeting with an attorney to set up living wills and powers of attorney, making sure HIPAA disclosures are current, etc. My siblings and I have been thrust into the process sooner than we expected, and are trying to figure out how to navigate these waters ourselves.

Add to this the fact that my dad has now been diagnosed with dementia (different than Alzheimer's), and our lives are shifting once again.

I'm sure I'll be writing more as we go through this process.

I Scream

I am a screamer. I can really belt it out—support and sustain a very long scream. The best is in an enclosed area with echo possibilities. So fun. I’ve been able to do it as long as I can remember.

Hollywood should hire me for voice work, I’m that good.

In dreams I am never able to scream or yell in scary situations. I even remember dreams as a very young girl where that was the case. I try and try, and my voice won’t work. It’s terrifying.

In everyday life when I unexpectedly encounter a spider, reality fades and my dreams come true.

Killers

We saw this movie today. I can't believe I've seen two movies in four days. I haven't seen two movies in the last six months!

It was an okay movie - no-brainer, light, lots of shoot-'em-up, some very funny parts. Pretty clean language until the very end of the movie when she drops the f-bomb. Totally unnecessary. Not a must-see at all, but I enjoyed it.

Whiter Than Snow by Sandra Dallas

Before I picked up this book, I abandoned my second book in two weeks. I have been so discouraged this year. I can't recall any time when I've read or started so many books that I didn't like. I was beginning to wonder if I had lost my zest for reading, it was that bad.

I don't think of myself as a picky reader at all. In fact, I think I'm a fairly eclectic reader, with a strong fondness for historical fiction (with a little romance thrown in) and biography. I love great writing, but I can overlook fair writing if the story is good.

I detest poor editing. It makes me want to call the publisher and offer my services as a proofreader. Bad grammar, poor spelling, obtuse writing-- these are things that can make me abandon a book. I also don't appreciate excessive profanity or sex in a book.

I had a t-shirt once that said: So Many Books, So Little Time. I used to feel I had to read any book I started. Not anymore. Why waste my time when there are so many other (probably better) choices out there?

Back to the book at hand. In my discouraged state, I chose this book from my pile of library books. I started it and the next thing I knew I was ninety pages into the book and I never looked back, so to speak. I became totally absorbed immediately, and couldn't wait to get back to the book when I had to put it down. It's a well crafted, well written story. Nine children walking home from school are caught in an avalanche. Four of them live. You find that out in the first three pages of the book. The rest of the book is learning about the children's parents. Then at the end you find out who survived. Despite the premise, it is a very positive book, not depressing at all. I loved it.

Now on to my next reading adventure!

Thank you Sandra Dallas for restoring my faith in reading.