Thursday, January 31, 2013

click to give $10,000 to Alzheimer's

I just got this message on Facebook, from Max Wallack:

I am a 16 year old sophomore at Boston University who is dedicating his life to help Alzheimer’s patients and their caregivers. In 2008, I founded PuzzlesToRemember, which, by now, has distributed over 19,300 puzzles to Alzheimer’s facilities around the world. I also volunteer 20 hours a week in an Alzheimer’s research lab.
I recently learned that I am the recipient of a $1000 grant from KidsWhoGive, which is a philanthropic program run by Farm Rich Products. I will be donating these funds to the Molecular Psychiatry and Aging Lab at BUSM.
Donating consumer goods like puzzles is helpful, but the knowledge created from research can have a much wider and longer lasting impact on society. There are 5.8 Alzheimer's patients in this country alone, with a new patient being diagnosed every 58 seconds.
I recently learned that KidsWhoGive having a “run off” competition between the nine students they have chosen throughout 2012. These students are being voted on by the general public. The winner will receive $10,000 for their “cause” I would really like the opportunity to provide $10,000 for research at Boston University Alzheimer’s Disease Center.
Please vote here every day until Feb 5 and help me bring this money to research. Just click on the word “vote”
http://kidswhogive.com/vote-on-entries/entry/?submissionId=164
This is a wonderful opportunity for people to donate for Alzheimer’s research without it costing them anything. Please share this information with your colleagues, post on your facebook page, your blog and publicize anywhere else in order to get as many votes as possible. It could make all the difference!

Wednesday, January 23, 2013

two more awards, need more votes!

best health blogs 2012
Healthline
I'm up for 2 more awards for this blog. For Healthline's Best Blog of 2012 contest, you can vote EVERY DAY on both TWITTER and FACEBOOK.  Ends February 15, 2013
For the Senior Homes Best Senior Living blog (which I was also nominated for last year) you can vote ONE TIME through FACEBOOK and once through GOOGLE+.   I'm not sure when the voting ends so do it soon!

Xmas and Alzheimer's Aunt, and more awards

It is interesting to me to examine the difference in my feelings toward my dad's illness (absolutely Alzheimer's--hey someone should photoshop an Absolut ad for Alzheimer's) and toward my aunt's illness which may or may not be some kind of dementia, Alzheimer's or just generic insanity.   Of course, she is not my dad (or my mom) so I'm more distant from the problem, and I was never close to her even before all this.
But I think the biggest thing is her children's inability to DO SOMETHING ABOUT IT.
I saw Alzheimer's Aunt (AA) at my cousin's house on Christmas Eve.  There was a mix-up over food; I was incorrectly told there would only be snacks while we opened gifts, so I ate lunch first, and then got there to discover a huge meal laid out, so the fact that I didn't really eat anything caused some tension.
I got stuck next to AA on the couch during gift time.  We were all drinking eggnog and being festive.  AA started gagging and puked her eggnog back into her glass and then set it on the table beside my glass.  Yes, a glass of puked-up eggnog is just the thing on a cold holiday evening.  I had been enjoying my eggnog until that point. After that, I just wanted to go home.  She insisted on playing a holiday trivia game from the 1970s and was angry when none of us could answer any of the questions or frankly, cared.  She spent about 15 minutes telling a long rambling story about something that happened 40 years ago that had no relevance to what was going on currently.  She seems to have no connection to the here-and-now anymore, and when she tries (see below), she fails.  I know slipping in time is an Alzheimer's thing, although my dad never did it.
Then Alzheimer's Aunt tried to talk to my cousin's boyfriend about a TV show she saw that she thought had something to do with the place where he works. 
"What station was it on?" (he is trying to be polite)
"I don't know." 
"What was the name of the show?"
"I don't know."
"What day was it on?"
"I don't know." 
"What else was it about?"
"I don't know.  But have you seen it?" 
"Uh, I don't know?" 
I felt so bad for him.  Basically that's her conversation:  old stories that we've heard before, from the 60's mostly, and that we don't care about, or her trying to explain something she saw on TV that she didn't understand and can't remember.
We tried to play a word game that involved cards with big letters on them (you made words from the cards in your hand) and even though the letters were several inches high in the middle of the cards, she complained constantly that she couldn't read them.  I ended up quitting the game halfway through out of sheer annoyance.
When it was time to leave, of course, just like last year, AA wasn't capable of carrying her own bag of gifts to the car and everyone had to rush around babying her.  My cousin, whose house we were at, said "Watch the steps" as AA left.  AA walked outside and promptly tripped over the welcome mat.  My cousin said, "I told you to watch out!" and AA replied, "you said the STEPS, not the RUG."  Really? 
The next day Alzheimer's Aunt came to my mom's house for the family Christmas dinner.  I had invited some friends as well, one being my friend who lost her mom to Alzheimer's and who also just lost her elderly aunt, leaving her free of sick old ladies to care for, for the first time in many years.  My friend majored in psychology and works at a rehab facility that also has group therapy for all kinds of mental illnesses.  Point being, she knows it when she sees it.
Partway through the meal, AA started hiccuping.  That is the signal that she's going to blow.  We managed to talk her into actually going into the bathroom rather than spewing vomit all over the table like she usually does.  After a few minutes in the bathroom, she came back in and started eating again.  I might note that there was never a sound of running water so she didn't wash her hands or rinse her mouth.  As usual (like the night before) her hygiene was severely lacking.  Her breath smells like death.  Her hair isn't clean or brushed.  She sleeps in her clothes, wearing them for days, and they stink. But she pours on cheap perfume like that will hide the rest, and it only makes it worse.
After the meal, I went to use the bathroom, and discovered that Alzheimer's Aunt had vomited all over the floor and the wall and just left it there, no attempt to clean it up. (Makes me wonder about the state of her bathroom, but then I decide I don't want to know.)  I cleaned it up as best I could but I was really pissed off.  She could have said something to my mom, or asked for a roll of paper towels or something.  Everyone was joking about how long I took in the bathroom and I just said, "Oh, I ate too much" but I really wanted to say "I was cleaning up puke from everywhere!  It was DISGUSTING."  Privately a bit later I told my mom what had happened and she was pretty angry too.  She thanked me for trying to clean it up. (And after we left, she said she scrubbed the whole bathroom with bleach because she didn't know where the puke had been.)
My friend said that whatever else is going on, whether it's dementia or Alzheimer's or something else, that Alzheimer's Aunt is severely mentally ill.  She was appalled at the whole puking thing.  So I feel a little vindicated, that it's not just me.
AA's stories keep changing.  She's blind, but she's reading a book. Then she wants someone to take her to  Barnes and Noble because she can't drive, only she IS driving because she talks about going somewhere by herself.  My mom drove by her house and said AA had backed the car in, missed the driveway, was half in the yard, in a bush, almost against the house.  I saw the car parked a similar way. She says when she goes out that she "picks a car and follows it" presumably hoping it's going where she is?  That could be why she gets lost all the time. She "can't see" her phone so she dials random numbers and talks to strangers.  We switched her plan to unlimited minutes yet she ran out of minutes somehow.   She said she paid the bill.  But she didn't.  I guess she thought having a prepaid phone meant you just pay once?  No clue.
The bottom line with Alzheimer's Aunt is this: In the last year she has lost an alarming amount of weight.  She looks sick, not healthy--her skin is grey and sagging.  Her hygiene has deteriorated to the point of not having any.  She vomits uncontrollably when she eats.  She claims to be blind although eye doctors say her eyes are fine.  She makes no sense when she talks.  Her doctor gave her a partial dementia test, which she seems to have failed but he made excuses for her wrong answers so she did not get any kind of brain scan to look for damage or disease.  Her family will not test her for any kind of mold toxicity because "the doctor did a regular blood test and she's ok" even though a mold test is a specialty test. AA refuses to see any other doctor that might be competent and actually diagnose her and give her a treatment plan.
I alternate between feeling helpless and feeling very angry.  Whenever she does anything stupid or gross or inappropriate I have to literally bite my lips to keep from speaking up.  My friend, who has finally witnessed Alzheimer's Aunt in action, said that I'm not wrong to feel this way, but she's not my parent and her own children are in willful denial about their mother's poor state of health.  Between whatever's going wrong inside her, and the unhealthy hoarder environment of her home, she's going to die.  And she used to be a nice lady, a smart lady, someone who was interesting to talk to.  It's such a waste.
I loved my dad and his illness was a waste too.  But at least we fought it, we took him for treatments, we enrolled him in clinical trials, we took him to various doctors.  We didn't sit back and say "Oh, that Bob, he's always been a little strange" and just let him die.


best health blogs 2012
Healthline
Now onto something good. I'm up for 2 more awards for this blog. For Healthline's Best Blog of 2012 contest, you can vote EVERY DAY on both TWITTER and FACEBOOK.  Ends February 15, 2013
For the Senior Homes Best Senior Living blog (which I was also nominated for last year) you can vote ONE TIME through FACEBOOK and once through GOOGLE+.

Tuesday, January 08, 2013

please vote for this blog!

You can vote once a day, until February 15.

best health blogs 2012
Healthline

Saturday, December 01, 2012

5 years gone, and Alzheimer's Aunt strikes again

This week was the 5 year anniversary of my dad's death.  He's been gone longer than he was diagnosed with Alzheimer's.  I'm not really any sadder than usual, except when I re-watched the episode of Walking Dead where Maggie tells her dad (who has been bitten by a zombie, and his leg cut off to try to save him) that it's okay for him to die.  The specifics of the speech, of course, weren't equal to the one I gave my dad, but it was 5 years ago to the day that I gave "it's okay to go" talk to my dad, and there I was watching it on TV.  I did cry, I admit.  I posted about it on Facebook and one of my friends talked about how hard it had been to give that talk to her mom when she was dying of cancer.  You have to say all the usual things.   
I love you.  It's okay to go.  I'll be fine.  We'll all be fine.  There won't be any more pain once you leave.  I will miss you every day, but it's better for you if you go.
My mom and I went to see the movie Lincoln and his last lines are something like, "it's time for me to go, but I'd much rather stay" and he goes off to the theater.  I'd like to think we'd all rather stay, given the choice, but with if your life is full of pain and suffering, sometimes it is time to go.
Another Walking Dead moment (it's a great show) this season was when Hershel (recipient of the zombie bite and the "it's okay to go dad" speech several episodes later) inexplicably asks his daughters to sing "The Parting Glass."  I have read it, in poem form, and it's dreadfully sad.  Why you'd want to hear it sung during the zombie apocalypse, I don't know.  It's even sadder when it's sung.

Here are some of the lyrics. It's supposed to be a drinking song but it seems to me like a dying song and always has seemed like that:
Of all the comrades that e'er I had
They're sorry for my going away
And all the sweethearts that e'er I had
They'd wish me one more day to stay
But since it fell unto my lot
That I should rise and you should not
I gently rise and softly call
Good night and joy be to you all
Fill to me the parting glass
And drink a health whate’er befalls
And gently rise and softly call
Good night and joy be to you all
I've been melancholy all week, between anniversary of dad dying and the onset of my yearly Seasonal Affective Disorder so I'm in non-functioning cocoon form for the next few weeks.

Except today.  Today was special.  And last night.  I got to see Alzheimer's Aunt.  Oh how exciting.
I got an URGENT text last night at 5:30:  "You have to go to the store NOW and buy Pepsi and bring to (AA)."  Really?  Being out of soda is now a national emergency?  I replied that I could go around 6:30 as I was not home.  At 6:28 I texted my cousin to tell him to tell Alzheimer's Aunt I was coming over.  I went to the drug store AT THE END OF AA's STREET (ie, she could have walked there) and bought 4 small cold bottles of Pepsi as directed (not diet,  not caffeine free, not big bottles, not cans, not room temperature) for the outrageous price of $8 and was at her door by 6:44 pm.
And she didn't answer.
I was just about to dump the soda on the porch and go home when she finally came to the door. 
"I was going to bed because you never showed up." 
"Didn't (my cousin) tell you that I was coming over?"
"yes but not when and you didn't come immediately so I was going to bed, I couldn't wait for you anymore." 
Yet the soda delivery was incredibly urgent?  I was like, whatever, and I left, really feeling put-upon for being treated like a delivery girl and not even getting a thank you.  I expect lack of courtesy from Alzheimer's Aunt but nothing from my cousin, who claims he told his mother I was coming at 6:30 and he doesn't know why she went to bed instead.
And don't forget, Alzheimer's Aunt isn't supposed to be drinking soda, only water, and no carbs in her diet.
Today I was going to take a drive and go to a store I like that's about 20 miles away and eat lunch at a restaurant nearby that's the closest location to me.  A nice couple of hours.  Instead, Alzheimer's Aunt wanted me to go to lunch with family members.  They were supposed to pick me up after taking her to the bank at 11.  So I figure, 11:30 or so.  Then it's 12:30, and nothing, no text, no calls, no car in the driveway.  Finally I get a text. "(AA) wanted to go to the library, the liquor store, and the craft store.  We'll pick you up soon."  Really?  I love the amount of time this blind woman spends at the library checking out books and buying craft supplies she can't use.  And what if I wanted to go to the craft store, I wasn't even asked.
By the time they picked me up it was after 1 p.m. and I was hungry.  We went to a seafood place I don't like very much but I'll eat a hotdog there (it's a New England thing--fried seafood and hotdogs in a little shack).  We start eating.  Alzheimer's Aunt starts hiccuping.  I start frantically trying to cram my hotdog into my mouth because I know what's coming.  Sure enough, BLAEAGH--puke everywhere.  Down her shirt, her pants, onto the floor, her purse, the table.  Then she just sits there wide eyed while my cousins scramble to get napkins and literally clean her up like she's a baby.  (everyone in the place staring at us, of course--luckily no one sitting right next to the puke bomb) They try to get her to go to the bathroom and clean herself up but she refuses.  I handed the rest of my hotdog and my fries off to my cousins and just sat there staring silently at the wall until it was time to leave while everyone else FINISHED THEIR FOOD (and mine).  I don't know how they do it, once the puke starts I can't eat anymore.  One of my cousins suggested, mildly, that Alzheimer's Aunt talk to her doctor again about the vomiting and AA just kind of waved her hands and said "I know but he says it's nothing."  Nothing.  For a grown woman to vomit all over herself, almost every time she eats?  I know I harp on that, because IT IS NOT NOTHING.  IT IS SOMETHING. 
Every time someone outside the family asks me "how is (AA) doing" I answer, "I don't know, I don't care, and I don't want to know."  I don't care if it makes me a bitch.  I can't handle this.  If she was being cared for properly by a competent doctor, if she had a real diagnosis and prognosis and treatment plan and medicine, I wouldn't be so angry.  She's going to DIE and my cousins are just blithely going along, enabling her bad behavior and reinforcing it and when they find her dead in her hoard it's really going to slap them in the face.  And no doubt somehow I will get blamed for it.