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.

Tuesday, October 30, 2012

Alzheimer's Aunt in Limbo

Finally one of Alzheimer's Aunt's (AA) children took her to a doctor.  Not a competent doctor, not a geriatric doctor, not any kind of specialist, but an old quack whom my mom hates and believes contributed to the death of my dad's aunt (who also had dementia/Alzheimer's).  This guy is old, he is incompetent, he doesn't care.  And old ladies LOVE him.  My grandma used to go to him and my mom made her change to a geriatric doctor who didn't enable her bad behavior.  I wanted Alzheimer's Aunt to go to this same geriatric doctor, but NO, she likes Dr Quackenberger and she's old and she's blind and we can't possibly take her to a different doctor.
And taking her to ANY doctor was held up because she had no insurance, she never applied for Medicare or she threw away her card or whatever reason, she wasn't getting Social Security, she spent the whole $60,000 golden handshake from her job in well under a year and now she thinks she's "broke" even though she makes more than twice what my mom does (and my mom still works!).
So most of the concerns I begged my cousins to bring up were ignored. They asked the doctor about her "possible" dementia/Alzheimer's and the vomiting.  Nothing about mold.  Or psychosomatic problems.  The stupid doctor asked her TWO questions to determine if she has dementia/Alzheimer's.  TWO.  What are your children's ages and birthdays (she said her 41 year old son was 30 but she knew his birth date so apparently that counts as a right answer?!) and to draw a clock, which she did badly and blamed on the "blindness."  She had a basic blood test that showed her liver and kidneys were fine.  Not a test for mold exposure.  When pushed he said he could do a CAT scan or CT scan (I don't know the difference and I wasn't there to hear exactly what he said) of her head but overall he seemed completely unconcerned by any of her extremely alarming symptoms.  (and no head scan was actually scheduled)

The vomiting, he just dismissed out of hand.  That baffles me.  If I started vomiting whenever I ate, I would go to a doctor. I know this for a fact because a few years ago I started vomiting when I ate ice cream, drank milk, or (oddly) ate raw brownies or cookie dough and yes my fat ass was at the doctor to find out why!  I was also coughing uncontrollably until I vomited from that too, no food necessary.  And they immediately scheduled a barium swallow because they thought I had cancer--a tumor that was in or near both my stomach and lung pushing on them, making me cough and vomit. I didn't have a tumor, only a hiatal hernia, and they gave me some medicine and said I also had viral bronchitis, and eventually I stopped coughing. I stopped drinking milk, eating ice cream, brownie mix and cookie dough and threw up only from coughing, and that rarely.  But I didn't just blithely puke everywhere and go on with my life and expect everyone around me to not react to vomit! And to this day, milk makes me vomit unless it is organic (and in tea, it still sets me off sometimes) so guess what, I don't drink non-organic milk and when I have tea with organic milk I don't have very much and keep a plastic bag or small trash can handy.
So the end result of the doctor visit is...nothing.  Maybe some kind of scan, who knows when, seemed pretty casual.
I was on vacation (you can read all about it here; if it's the future, go back to October of 2012 for the 6 vacation entries) with no phone so blessedly for over a week I knew nothing about AA's problems and didn't even think about her.  My mom had said that if Alzheimer's Aunt called her with a pointless demand (I lost my glasses!  I unplugged my computer!  I want to go for a ride right now!) she was going to ignore it.  I guess that didn't happen; my mom didn't mention it if it did.
We came back to Hurricane Sandy (we battled it on the cruise as well) and we had our own problems to deal with so I had no time for her.  I did talk to one of my cousins, who said she had to go there every other day to deal with something or others, and that her mom is "so depressed" and that she "can't deal" with anything and she can't concentrate on books on tape and she can't read big print books and she's still having problems with medical insurance, she claims to have paid for some COBRA coverage but there's no cancelled check, direct withdrawal or credit card payment for any.
My cousin's thought on the vomiting is that Alzheimer's Aunt eats "inappropriate food" that's "too hard to eat" because one time she saw AA eat pancakes and she didn't vomit.  Well I saw her puke up half a plate of spaghetti, how is that harder to eat than a pancake? 
Apparently Alzheimer's Aunt needs a dentist now, so we have to find out about dental insurance, which for some reason my cousins think is part of Medicare but I don't think that's the case.  I know Alzheimer's Aunt doesn't brush her teeth, her breath stinks, so it wouldn't be at all surprising if her teeth are rotten.  Apparently once someone finds out about medical insurance I'm in charge of taking AA to my dentist, who is a really sweet lady from India who hugs me and is very kind.  I hate to expose her to AA's filthy body and sewer-stink mouth and irrational speech. 
A couple of weeks ago Alzheimer's Aunt demanded once again to be taken to Verizon to get the pictures off her old, broken (frustration over voice mail) phone and then to be taken to Barnes and Noble to get her Nook working.   I'm confused why someone who insists in every other sentence that she is "blind" or "can't see" needs photos or an e-reader.  We looked it up and apparently the Nook doesn't read to you (my Kindle does, I say smugly).  I tried to use the Nook to figure it out and show her, and wow what a confusing mess. I love my Kindle!  (sorry for the spontaneous ad; I do plug things I enjoy)
So the end result is, eye doctors say there is nothing wrong with her eyes.  Medical doctor says the vomiting is no big deal and there's no dementia or Alzheimer's (even though no tests were done).  So we have a person who claims to be blind, pukes constantly, and makes no sense when she talks, but she's okay!?  
I give up.

top senior site award

Another award for my telling of my dad's story.  I'm in disbelief every time I get one.  Really?  My sarcasm, my anger, you find it helpful?  O-kay....

The listing:

The letter:
I'm following up with you about the list published today of the Top 100 Senior Living Sites for Nurses. I emailed you last week to tell you you had been nominated for inclusion, and I'm happy to report that your site has been featured on the final list! You can view the whole thing here: made this list so that our readers, prospective nursing assistant students and current professionals, could learn more about the growing field of elder care and senior living. As the baby boomer generation ages into retirement, there will be a growing need for nurses and nursing assistants who are passionate about offering lifestyle improving care to elderly patients. Thank you for maintaining such a useful site, and congratulations!
Best, Lauren

So again, thanks for reading, thanks for the support you give me, and I'm sorry this blog is necessary for any of us.

Tuesday, September 25, 2012

Alzheimer's Aunt gets a new phone & fails to eat dinner

I'm beginning to think that either we were really LUCKY with my dad (remember, he tried to kill my mom AND a doctor) or (Alzheimer's) Aunt (AA) does not have dementia.
Although I had a meeting scheduled last night, I was basically pulled out of it to go to Verizon to get Alzheimer's Aunt a new cell phone.  Why?  Because she broke the old one in her "frustration" (that word gets thrown around a lot by my cousins) over the voice mail issue.
I'm having a lot of trouble reconstructing the events of yesterday.  Apparently Alzheimer's Aunt tried to use Skype on her computer to call one of her children who is out of state.  She couldn't manage to do it.  Whether that means that she couldn't get Skype to start, or that her child wasn't answering, I don't know.  So "in her frustration" she once again unplugged everything.  WHY does she think that solves ANYTHING?  The landline was disconnected as part of this madness.  Then she panicked when she realized she had no phone and, if I'm understanding correctly, attempted to use the (unplugged) landline phone to Skype her out-of-state child to have him call ME to tell me she has no phone.  That makes absolutely  NO SENSE so I'm guessing either I don't understand the story, or she doesn't even know what she was doing.
Although she had no phone, somehow my cousin found out that AA needed a cell phone immediately (unless the outing was already planned) and I got the call to "drop everything" and go to Verizon. Apparently because I can help my (perfectly cognizant) mom with her cell phone needs, I'm the go-to cell phone person in the family for crazy people.  And I had to prove I'm "helpful" apparently since usually apparently my brand of help is too bossy and horrible and unhelpful.  
So off to Verizon.   On the way, I politely asked Alzheimer's Aunt how she was doing.  She started in with a litany of whining "I'm not having a good week" (it's MONDAY) and I tuned out. Then I found out that she needs a phone jack splitter. I offered to walk over to a department store while they were waiting to be called by Verizon and get one.  I couldn't find one unfortunately--too old school I guess.  I came back and looked at some basic phones (although her daughter insisted that she wanted to get her mom an i-phone, that daughter wasn't there that night and no i-phone was happening for someone who smashes a cheap flip phone "in frustration" over not being able to use it) to see if any had big button or displays or voice dialing but I did NOT point out my choices to AA, only to my cousin.  Alzheimer's Aunt stared blankly at the display of "basic phones" (not smart phones).  She refused to even pick any of them up to see if she liked them or could use them.  She wanted a "stylus" to dial with because her fingers go on the wrong keys (because she's BLIND remember) but somehow she can aim a pointed stick accurately.  She finally settled on a phone that talks when you push the buttons (two-zero-three) and a $50 a month unlimited minutes plan.  Apparently her last cell phone bill went over by $300 because she couldn't figure out how to dial and she'd call random people and TALK TO THEM (oh, those poor people) and also call numbers from old scraps of paper and her call log (remember, she's blind, but somehow she can read when she wants to) to "find out" who they are.  She had the broken phone with her, wanting her pictures.  The guy promised to try.
We were standing by the counter waiting and when I looked over she had the most childish pout on her face, her lip stuck out, her eyes all small.  She didn't want to wait, but she had to have her pictures!  Then she said she was "exhausted" and "faint" and all this was "too much" for her (like we forced her to go there).
Finally the guy came out and said he couldn't get any data off the broken phone, causing more pouting.  She couldn't figure out how to swipe her credit card to pay, she didn't know her PIN (luckily my cousin knows it; I deliberately looked away because I don't want to know it).  She had a new big wallet and was complaining that all her credit cards don't fit.  Half the slots were empty.  We pointed that out.  "That's what my daughter says too," Alzheimer's Aunt whined, "but it's not true.  They don't fit."   Somehow I am the only person who thinks any of this is irrational.
She can barely walk.  She's flat footed and takes baby steps and sways and seems about to topple at any moment.  We finally made it to the car.  It's parked far away because she "lost" the handicapped parking application I filled out for her that needed to go to a doctor to get verified, so she has no parking placard. Probably because it was "bossy" of me to try to get her a handicapped parking pass that she could use in anyone's car so she wouldn't have to walk far.  I'm such a terrible person.
On the way home, she's going through the bag, throwing everything around, all the packaging and receipts and little booklets and cords and things.
"I don't have the phone," she announces.
"you have it," we say.
"No I don't!"  She starts yelling.  "I lost it.  Turn around right now!  I need to buy another one."
"no, you have it."
She throws the bag at me. "Is it in there?  Show it to me."
I verify that the bag is indeed EMPTY because she took everything out and flung it on the floor.  "You have the phone," we say over and over.
"You're gonna be sorry!" she's screaming "you're gonna be sorry when I get home and there's no phone!"
"you have the phone."
"No I don't have it!  I lost it!  We have to go back!"  Then, "oh, is this it?"
"yes, that's the phone"
"oh I thought that was my old phone."
I could go back and read every entry on my dad for the 4 years of his illness and I can't believe I'll find a pattern of behavior anything like this.  The ONLY time is when he lost his bundle of business cards and notes and he blamed my mom and then found them.
The night before the Verizon expedition, Alzheimer's Aunt was supposed to have dinner at my mom's house with one of her kids.  My mom cooked extra, for 2 more people--wouldn't you?  Last minute, Alzheimer's Aunt "didn't sound right on the phone" to my cousin who had to run over there.  She was "having a bad day" and started in on her pity-party poor me victim-mentality and refused to go eat because she's a "burden" on my mom and me, and kept my cousin from going either, demanding a ride in the car instead.  So my poor mom was stuck with all this food.  No apologies issued.  Even before AA was sick, my mom often had her over for meals and holidays.  AA never had her over in return (not that she would in the hoard) or even offered to reciprocate with a restaurant meal.
I am just baffled that my violent abusive dementia dad was easier to handle than Alzheimer's Aunt. I wish someone would bring her to a geriatric doctor and get a formal diagnosis so we'd all know what was really going on.

Friday, September 21, 2012

No matter what (Alzheimer's Aunt) & Alzheimer's day

I've been trying to stay away from the whole Alzheimer's Aunt (AA) situation.  It's mostly making me angry, as you can tell from my posts here.
One of my cousins told me something today, though, that I need to share.  Alzheimer's Aunt is supposed to be filling out some kind of lifestyle questionnaire for the elder care lawyer, so the lawyer can help guide her into the right paperwork, etc.  One of the questions was about being kept alive by machines, being resuscitated, etc.  Alzheimer's Aunt stated, emphatically, that  
if there is even a percent of a percent of a chance, she is to be revived and kept alive by any and all means necessary, no matter the financial or emotional hardship to her family.
This is a woman who did not hesitate to pull the plug on her own mother 20 years ago.  When my cousin, mildly, pointed that out, AA got angry and non-responsive.   
So it's okay for you to kill your mom, but not okay for your kids to kill you in the same situation?  And for your kids to go bankrupt and have their lives ruined caring for a brain-dead person?
Would you like to know WHY?
Because she thinks she's going to hell.  She doesn't agree with her church so she's decided her god is going to punish her.  I suggested that maybe, rather than hashing this out with a lawyer, she call a priest.  A very nice priest came out and talked to my grandma last year for her birthday (ironically, the last birthday present I ever gave her, who knew?) and I'm sure that same priest would come for Alzheimer's Aunt.
Today is World Alzheimer's Day.  Hope, pray, shake your rainstick, whatever it takes. for a cure.

Monday, September 17, 2012

had it with you....Alzheimer's Aunt

The Rolling Stones have a song called "Had it with You" and that's about how I feel.
I didn't attend a single minute, a single SECOND, of the lawyer's meeting.  The lawyer had said she might ask me to print some documents (when she emailed me the day before) but she didn't.  No one thanked me for setting up the elder care lawyer meeting OR for having it at MY house (nearest to AA's hoard but not in it).
As far as I can tell, someone has had to run to AA's house for "emergencies" last Thursday, Friday, Saturday, Sunday, and today.  Most of the involve her not answering her phone (today's panic) or not being able to find her glasses (yesterday's).  Of course when you get there, she's found the glasses or just forgot to charge the phone.  
I was supposed to take her to another useless doctor appointment (check her blood pressure!  Really, with all that's going on, her BP is the priority?) tomorrow and I casually said, before the lawyer got there, "Can the doctor's appointment on Tuesday get rescheduled so someone else can take her?" and one of my cousins said that was already happening.
Because AA is PISSED at me.  I've got an ATTITUDE, I'm ordering her around, I'm not helping her.
She refused to speak to me when she got there for the meeting.  She didn't thank me afterward.  I was talking to one of my cousins before the meeting, and AA's phone rang.  First she says, "Oh, is that MY phone?" when no one else seems inclined to answer.  Then she starts freaking out, flinging her pocketbook around, wailing, "oh this stupid thing!" and basically acting like a 5-year-old until finally she managed to somehow (I don't know how because getting a cell phone out of a purse is probably at least a 3 person and 20 minute job, right) get out the phone and answer it.  Just then the lawyer arrived.  AA did her patented hand-wave "get away I'm on the phone" at her, and that was when -I- walked away.  Lawyers get paid.  You want to pay them while you gossip on the phone about how horrible your life is being blind and helpless, go right ahead.  I'm not paying the lawyer's bill, am I?
So I don't know and frankly don't care how the meeting turned out.  I heard a bit of talk about another meeting being scheduled for signing paperwork that evidently I'm expected to be at (as a witness, cuz you know she's not giving evil bossy me POA or anything else) but no one bothered to tell me when or where so maybe I'll be busy who knows?  I don't know and I don't care.  And I also don't care if I'm a bitch.
She invited herself to my mom's for dinner last night.  She stunk.  Body odor, putrid breath, dirty clothes.  My mom said today when I talked to her, "you didn't eat much" and I said "because AA smelled so bad!"
Today the alarm bells were ringing because she's not answering her phone.  Yesterday it was lost glasses (oh, I found them) and then a hysterical crying melt-down because no one loves her and cares about/for her. Which is such bullshit.  She's got everyone at her beck and call and she's totally abusing the privilege.  During the lawyer meeting she expected her laundry done (by me)!  I'm a fucking MAID now?  And "here's some bills that need to be mailed" that all need stamps!
Oh but she's SO DEPRESSED (but refuses to take the anti depressant that someone finally figured out she needs) she's BLIND and HELPLESS.  And she's not going to ANY doctor EXCEPT an eye doctor to fix her eyes.  She's not cleaning until her eyes are fixed.  She's doing nothing because she's BLIND.  Except, of course, when she makes comments clearly showing she can see.
Had it, had it, had it, had with you.
UPDATE:  today's emergency was that she tried to move her TV and "in her frustration she unplugged everything in the room." (including, I assume, the house phone) My simple question, "How did that make her cell phone not work?"  "She broke her cell phone."  Now, the other day, she was wailing and crying that everyone who calls on the cell "hangs up" in 4 rings and something about "automatic voice mail" and she doesn't understand voice mail and she can't control her phone so she has to control everyone who calls it (that's her words, not mine:  CONTROL).  We've told her that you only have about 30 seconds to answer the phone and no one is deliberately hanging up on her.  She expects everyone who calls and gets voice mail to simply call back over and over and over until she answers!  Because it's too difficult to carry the phone around or keep track of it (she can't keep track of her glasses, having to know where the phone was too would break her mind entirely apparently) so she locates it by the ring.  And I guess when it stops ringing she wanders off so when it rings again, the cycle starts again.  I, personally, won't call someone who puts that kind of restrictions on me.  I'm not calling 11 hundred times until you have the sense to stand next to the phone or know where it is.
In an aside, I asked one of my cousins for a favor.  I needed help with winterizing my koi pond.  You'd think, with all I do for AA, someone would throw me a bone.  Nope.  "She's not answering her phone, I have to go there, can't help you. Maybe another day."  Next time you call me, cousin, that's my answer too.  Can't help you today, maybe another time. 
My mom thinks AA is faking it or at least exaggerating whatever she does have in order to get attention.  She is totally spacey and dementia'd out at one moment and then she's looking at a letter tile game and saying "oh, can you use French words?" and spelling things in French. (Blind, what a miracle, huh?)

Tuesday, September 11, 2012

Even more Alzheimer's Aunt--or why should I do this again?

Last week I spent half a day at the gym, which I do quite frequently as I still have over 100 lbs to lose.  My phone is shut off when this happens, as phones aren't allowed there.  I was in the locker room changing and I turned the phone on to find it deluged with voice and text messages from various cousins:
"Go to our mom's NOW she's not answering the phone."
"She called me at work and hung up and now she's not answering."
"Been trying to call her for 4 hours, please hurry over there!"
"Where are you? you need to check on our mom NOW!"
I was SO ANGRY.  I immediately texted everyone back saying "I was at the gym for 5 hours, I need to eat.  I'll go over in an hour."
The "been trying for 4 hours" cousin sent back a really passive-aggressive message, "well I have work in an hour but I'll have to blow it off to check on her THANKS you take care of YOURSELF."  My point is, you were calling her for 4 hours and then waiting around for me to answer your angry text messages, you had over 5 hours to drive the half hour to her house and check on her yourself.  SHE IS NOT MY PROBLEM.
Turns out Alzheimer's Aunt had accidentally shut off her phone ringer.  No one apologized for ranting on my voice mail or text messages.  I pointed out to them that I don't have a key to AA's house.  So if I go there and the door's locked and she doesn't answer, what am I supposed to do?  Call the cops?  They'll break down the door, see the hoard and call in Adult Protective Services.  I think that's a wonderful idea.  My cousins don't agree.  Their solution? Here's a key.  (groan)
A few days later, Alzheimer's Aunt found some paid bills.  We went over there to deal with sorting them.  None of them were marked paid or had any notes. (When I pay my bills, I write the date paid, I circle or write the amount I sent, and if I write a check I note the check number.  Isn't that how it's done?)  She had bills from 2010, 2011, 2012 and back in the 200x's all mixed together.  She kept reply envelopes and blow-in ads.  She kept 3 years of newsletters from AARP and AAA.  Really?  When I tried to throw them out she lost her mind.  Remember, she can't READ (so she claims) but she's saving old newsletters?
I tried to talk to her about going through her books.  She has thousands.   (She can't read. Always keep that in mind.)  She said she wouldn't go through them until December (why?!) (Update: it's now the end of January and she hasn't reorganized any books, but she has purchased many more.)  She spent tens of thousands of dollars stocking up on books for her retirement and now she won't let them go even though she can't read them.  She claims to have no money and that she can't pay her bills now that her golden handshake ran out.  (Her pension and SS together [when it starts] are about 3x what my mom makes on SS and with her part time job, BTW.)
As we were sorting in the sweltering hot, stinky house, Alzheimer's Aunt got a phone call from her daughter-in-law.  We who were WORKING there kept asking her things,
"do you have a stapler?"
"Do you still use this credit card?"
"Do you have any sticky notes?"
"is this still your car insurance company?"
and her response was to impatiently wave us away: "I'm on the phone" talking loudly about absolutely NOTHING important.
Finally I got so angry I just went to sit outside in the breeze. She got off the phone and I could hear her whining (yes, whining) to my cousins about me so I stayed away.
So, in case you are wondering, I am "mean" and a "bully" and I "order" her around.  I want to "throw all the books in the garbage." I "pressure" her to clean her house and sell her car.  
I pointed out, mildly, that I am trying to HELP her.  But my cousins said Alzheimer's Aunt went into "poor me" mode (her common theme) and that she said "no one wants to help her" and I almost LOST IT.  I'm TRYING to HELP HER but she thinks I'm a BULLY.  So exactly why should I bother anymore?  She's not my mother.  She has her own kids.  But oh, wait, her kids work and I live closest to her and I don't work (no matter that I'm writing 5 books and learning to speak Spanish, none of that counts) so I'm the designated punching bag.
Friday is the big family meeting with the lawyer.  I  scheduled it but I plan on excusing myself.   Alzheimer's Aunt is not going to name me for her POA, for her medical conservatorship, or as a beneficiary of her will or life insurance, why should I waste my time sitting through the meeting?  Anything I say will be discounted because I'm not her child and because I'm a nasty bully.
I'm also beginning to be deeply suspicious of the whole "I'm blind" thing.  To reiterate, she lost her reading glasses and therefore went to the eye doctor to get new ones--not because she was having any unusual problems with her eyes.  The eye doctor examined her eyes as he usually does and saw that she had cataracts that needed treatment.  She walked out of the office saying "I'm blind, I can't see, I can't read."  That seems awfully psychosomatic to me.  It's progressed to "I can't find anything because I can't see" (I'm helpless, I'm a victim).  Her mental confusion is real (what store is this?  What bank has my accounts?) but I think the whole blindness thing is a big fat fake to get attention.  So I'm a horrible person to think so. It's either that or magically her visual cortex broke down when the eye doc said "you have cataracts."
I'm just so tired, physically and mentally.  When my cell phone rings with a call or chimes with a text, I feel dread.  I used to feel excitement: I have a friend!  Someone wants to talk to me!  Now I think, "Oh god, what manufactured 4-alarm fire are my cousins panicking about now?  She didn't answer the phone again?"
I'm going on vacation next month.  For a glorious week, no cell phone and no internet.  Don't call me, I don't want to know.
After the whole "she's not answering the phone" panic of last week, when my cousin talked to me to say Alzheimer's Aunt was fine, she just shut off her phone, he reiterated that the terror is that they'll find her dead in the hoard.  He asked me about my dad and if I ever wished he died sooner.  I told him the truth.  The time my dad ran away and said he was going to walk in front of a truck--I wish I'd let him.  The time he got attacked by the cat who cut an artery and he was spurting, bleeding to death and I saved him--I wish I hadn't.  My cousin was quiet for a while and then he said, "Maybe it will be better if we find her dead in her hoard."
Maybe, indeed.

Monday, September 03, 2012

I don't wanna

I don't want to go down this road again.  I've been down it once and that was too many times.
It's not a nice winding tranquil path through the woods.
It's ugly and sad and brutal and it ends very very badly.
There is nothing ahead but heartbreak, devastation, and loss.
And if you think that maybe I should concentrate on the happy side of dementia and Alzheimer's, let me know when you find it.

Alzheimer's Aunt, the continuing saga

In the past few days, things have continued to go downhill with my aunt.  She asked me to come over and cancel the newspaper.  But when I called and was leaving a message, she didn't know her cell phone number to have them call back.  She gave the house number, which is not working.  My cousin went over there to search for paid and/or unpaid bills but was unsuccessful.  Alzheimer's Aunt claimed to have seen an ATT bill but she couldn't read it and no one can find it.  She can't operate her cell phone. I took a photo of the buttons and blew it up huge in Photoshop, to full page size, but she can't seem to connect the button positions on the paper with what's on her phone.  She doesn't understand the pound sign (#) either.
We have made an appointment with the same wonderful elder care lawyer we used for my dad and grandma (and even my mom) for 2 weeks out to discuss what paperwork needs to be done. (If anyone is in CT and needs a great elder care lawyer I'll gladly give you her information.)
I was going to make an appointment with a geriatric doctor for basically, an emergency because that's what it's becoming, and now we find out that her health insurance from work ended a few days ago and apparently she has never applied for Medicare or Social Security so she has no income anymore (her golden handshake included a year's pay, which she spent on who knows what) or medical insurance right now.  She is supposed to have a pension from work, she doesn't know how much or how to get it, and she can't seem to manage a phone call to her place of employment and she insists on driving down there in person (which none of us want her to do).  The appointment now can't get made, meaning no solid diagnosis of what exactly is wrong with her can't happen either.  Her downward slide is very frightening.
I'm working on a plan to deal with her hoard.  It's going to have to happen.  It's a 3 bedroom house with a living room, kitchen, dining room and 2 bathrooms.  1 bathroom, at least two bedrooms, and the dining room are filled (not sure about the basement, but it's probably bad, along with the garage).  She wants to move to senior housing but she doesn't understand she'll have to get rid of 95% or more of her hoard--she'll get 2 rooms of space at a senior place--if she's lucky.  She might get a studio, which is one big room.  I'm  desperate enough to call in one of the Hoarding shows but I don't think my cousins will allow that.  Of course who will have to clean the hoard?  Oh, Bert doesn't work and she's so close, she can do it. Toxic mold?  Dead cats?  She can deal.
Apparently a few days ago Alzheimer's Aunt decided she needed to know how much money she had.  She walked uptown and went to every bank asking them if she had an account there and if not would they "go on the computer" and look up her balance and she was very angry that they "weren't nice" to her.  She is lucky no one called the cops and reported her as a crazy person.  Which, at this stage, for all intents, she is.
One of my best friends hasn't had a car in 2 months--she's a single mom on a single income and her engine blew.  I tried to get Alzheimer's Aunt to sell her car to my friend, who would gladly make payments (giving my aunt a small income, in cash even) but now she insists she'll drive again.  Which she won't.  Hopefully the doctor (when we can get her there!) will concur and then I can help AA with money (ending also her car insurance and car tax payments) and get my friend some transportation.
We took Alzheimer's Aunt shopping.
"What store are we at?" at the front door.
"Stop and shop."
Halfway through, "What store is this?"
"Stop and shop."
"This store is too big, I can't shop here, I'm too confused.  It's too crowded." (It wasn't crowded at all.)
Standing on the curb as we left the store "Where are we?"
The next day, "I need to go to the drug store, I'm out of so many things" like she hadn't just been in the grocery store.
I saw her last night and again today.  She had the same clothes on.  It's so very very sad.  Plus, to be utterly selfish, my grandma died 6 months ago, and my mom and I spent NINE YEARS between my grandma and my dad taking care of someone who wasn't quite right.  I simply don't have it in me to do this again.  If I believed in a traditional god, I would ask him, why me?  Do you really think I am this strong?  But the gods I do believe in work in different ways.  There is a purpose, but what it is I can't imagine.  Unless someone offers me a job based on my excellent blogging here. Hint, hint.

Saturday, September 01, 2012

Alzheimer's Aunt?

This is the part of my blog where I lie to you.  Not because I want to, but because I have to protect this person's identity (and not that I want to do that either--I'm all about the brutal honesty).  I'm going to call her my aunt so by process of elimination you know she is probably not my aunt.  We shall call her AA for Alzheimer's Aunt to occasionally save space.
Let's set the stage.
About year ago, Alzheimer's Aunt collapsed at work.  Apparently because she had high blood pressure.  The doctor told her to "avoid stress" so she took that to mean "avoid going to work" and tried to take a 5 month leave of absence...when she was about to retire.  Her place of work did not take that well, and she ended up having to retire immediately.   She was the only person surprised by this.
Now I will take you back, down bumpy ugly memory lane.  My dad retired early too (in hindsight because of his very early stage Alzheimer's) and then once he no longer had the mental stimulation of work, he went downhill very fast.
So Alzheimer's Aunt stopped working.  She stayed home, alone, all day in her house.  She is a hoarder.  If you've seen any of the hoarder shows on A&E or TLC, you know what to expect from that.  Her house has mold in it too.
And, just like my dad in his early, pre-diagnosis days, Alzheimer's Aunt got stranger and stranger.  She started to randomly vomit while eating.  And she didn't run to the bathroom like anyone would if they vomited at the table, she'd just grab a napkin and puke into it.  And it wasn't delicately coughing up a bit of food that went down wrong or tasted bad, spitting it discreetly into a fold of the napkin.
This was full on vomit, it stunk, and pretty much if you were at the table with her, your appetite was ruined.   But if you said anything, like "wow that's gross"  you were the bad guy.  (You, in this case, obviously meaning me.)  This happened at Thanksgiving, it happened at Christmas, it happened in restaurants. (And if you are grossed out reading this, imagine how much grosser it is in person.)
Finally I spoke to my cousin after Alzheimer's Aunt and I were out together and AA vomited all over the table in a restaurant.  AA swears the doctor knows about the vomiting.  Cousin calls, doctor has no clue, but nothing is done to investigate why a grown woman in her 60s suddenly feels the need to puke everywhere like it's no big deal.
All this time, she hasn't been driving, because she's "dizzy" and then she started walking with a cane for the same reason.  The family is basically her slaves when she needs a ride, while her car sits in her driveway unused.  She is supposed to exercise but she's too dizzy to walk, plus the cane.  She lives in a hoard and she can't walk.  And later on (below) she can't see either.
She is also having hygiene issues.  I know you won't believe me, but once she was dirtier than my grandma used to be.  Lank greasy hair, smelly dirty clothes, all sorts of unpleasant bodily odors.  At least my grandma changed her clothes.
One memorable day we had to rush Alzheimer's Aunt to the ER because she was "dizzy" and "couldn't breathe" and she won't call 911 because they will report her hoard to the fire marshal.  Nine hours at Yale ER then and the ER doc says (not to my surprise) that it's a SIDE EFFECT from her BP medicine.
This spring, she said she lost her reading glasses and couldn't read anymore.  We took her to a drug store and she bought a selection of those cheap reading glasses.  But they didn't work for her.  She made an appointment at an eye doctor to get new reading glasses.   The doctor gave her a full exam because she hasn't been in many years and found out she has cataracts.  She walked into the place wanting new glasses and walked out saying "I'm blind."
Now she was blind, dizzy, couldn't walk, and couldn't breathe.  Living in a hoard.  Try to keep track.  I know I'm condensing a year into a single post.
At one point, she did drive somewhere, because of not having a phone (see below) and my cousin witnessed her literally bouncing off parked cars going 5 miles an hour.
The cataract surgeries were both very successful.  And yet she still claimed not to be able to see. (Remember, she went to the eye doctor's initially because she lost her glasses, not because she was having vision problems.  Once the doctor said "cataracts" she went blind instantly.)  The doctor made her new glasses.  She went to get them and claimed she couldn't see the enormous print the doctor held in front of her. It seemed much more likely to us that she couldn't read.
She lost her house phone and her cell phone in the hoard.  After much searching, a variety of cordless and corded house phones were located, all dismantled and broken, with exploded batteries.  The one seemingly functional corded phone did not work, no dial tone, no matter where it was plugged in.  The cell phone charger was finally found behind the stove and a place of honor made for the cell phone and its charger, where it was to live at all times except when being used or when she left the house and took it with her.
She can't read (or can't see), remember.  The ensuing conversation goes something like this:
"Did you pay your phone bill? There's no dial tone anywhere in the house."
"I pay my bills."
"When did you pay it last?"
"I don't know. I paid it."
"Who do you write the check to?"
"I don't know."
"How did you pay it if you can't see?"
"I paid it."
"Do you have ATT?"
"I don't know."
"Where are your paid and unpaid bills?"
"I don't know."
The next week, last week, she had to return to the eye doctor to see if wearing the new glasses had helped.  The eye doc thought maybe she had to get used to them, I think they are tri-focals or something.
The day before the appointment, the call to her goes like this (using the cell phone, since the house phone doesn't work):
"Don't forget about your eye doctor appointment tomorrow."
"Right, I have to get my new glasses."
"No, you got them last week.  You were supposed to be wearing them."
"I am wearing them."
"Ok, I'm coming to get you at 9:30 tomorrow."
"I don't need a ride."
"Who is taking you?"
"I'll walk."  She can't make it to the end of her driveway even with the cane.  And she has no idea where the eye doctor is because every time she gets a ride she makes sure the person driving knows in advance where it is.
"You can't walk.  It's too far and you don't know where it is."
"I'll walk.  I need my new glasses."
"You have your glasses already!"
At the eye doctor, she insists she still can't see.  He immediately sends her back to the eye surgeon who fixed her cataracts.  He says her eyes are fine and there's no reason she can't see.
That night, there's a small family meeting.  During the meeting, the words "dementia" and "Alzheimer's" and the phrase "can't live alone" are liberally strewn about.  My mom and I have thought for months that she was in the beginning stages but we knew if we said anything (family politics) an explosion would happen.
I walked out of that meeting with a lot of thoughts, none of them happy.  I'm worried that, on one hand, my vast experience with Alzheimer's (via my dad and this blog) will be ignored--she's only my "AUNT," not my parent.  On the other hand, I'm equally worried that I'll end up being her caregiver because I haven't got an outside-the-house job and I live closer to her than anyone and I have the experience.  I don't want either of those things to come to pass.
I think a couple of things about her.  I think she might have stomach or throat cancer (hence the puking) that has metastasized to her visual cortex--not only can she apparently not read, she doesn't seem to recognize objects that are right in front of her.  Or that she has dementia of some type and someone it's in both her visual cortex and whatever controls her vomiting when eating.
My mom thinks she has severe mold poisoning, which has some dementia-like symptoms.  And apparently mold poisoning is fairly permanent, once the damage is done.  I thought mold mostly impacted the lungs but some web sites do list other symptoms.
I advocated that she go to a geriatric doctor (not her family practice doctor) and get a full workup including cognitive testing and blood work. I think she needs a barium swallow (I had one once, doctor thought I had cancer because I couldn't stop coughing for 4 months) for the vomiting and an MRI or some other brain scan for her mental symptoms and (hysterical?) blindness.
I can also add in that she's been in severe depression (hence the hoarding) since the death of her husband many years ago, and she's never been treated for the depression or the hoarding.  When I tried to bring that up delicately a few years ago, pointing out that in Hartford there's a place that treats hoarding and OCD, you would have thought I said Alzheimer's Aunt was a child molester or something.  I didn't bring it up again.
I won't be changing the name of this blog--forever it will honor my dad--but I might have new fodder to write about.  Sadly.

I dreamed about my dad last night.  In the dream we were in the Yucatan visiting Mayan ruins.  And we were supposed to be in Miami the next day, only we were supposed to DRIVE there--basically from Merida, across the peninsula, up the coast of Mexico and across Texas and Louisiana, and down the Florida panhandle, in less than a day, and I was trying to find someone to fly us there.  And the ruins we visited were so cool, I wish they existed otherwhere than my dream state.  It was a fun dream-cation with my dad.

Friday, August 17, 2012

"I'd rather have Alzheimer's than cancer" Really?

A couple of my friends were over the other day and because we are morbid we were talking about ways to die.  And one of them said, "I'd rather have Alzheimer's than cancer.  At least I wouldn't know I had it."
And that makes me crazy. People say that all the time.  There's that old joke, "I might have Alzheimer's but at least I don't have Alzheimer's." It's not true.  My dad KNEW.  He didn't know the word "Alzheimer's" (he seemed to understand it as if it was a brain tumor--he'd say "this thing in my head, it's killing me") but he knew he wasn't right anymore.  After he died my mom found a note he'd written, a heartbreaking list titled "things I can't do anymore."  Maybe at the very end, when he was burning up from MRSA or VRSA (whichever one he had) and pretty much brain dead, he didn't know, but then again, he didn't know anything at that point.
I argued with my friend for 2 reasons.  One is that, unless you have a brain tumor, you're pretty much YOU until the end with cancer.  You're in terrible physical pain, true, but people can talk to you and you know who they are and everyone can say a proper goodbye.  Not the long drawn out goodbye that's never officially said with dementia.  I have no idea where along the line my dad forgot who I was, but I know it happened.  I became a person who visited him and helped him out, someone he liked, but he had no connection to me.  My mom was the awful bitch who stole his money and kept him prisoner and drove him to places so "they" could torture him.  As opposed to my grandpa, who died of cancer 25 years ago this summer, who knew everyone and everything up to right before he passed on.
Reason two is a huge one: you can get better from cancer.  I know more than one person who is walking around today who had cancer in the past.  My high school friend, when she was finally listened to and diagnosed, was stage 4 ovarian cancer.  They put her in hospice to die.  She gave away her cats, her car, everything she owned.  16 weeks later, the doctors said, "You aren't going to die after all.  Go home." Bewildered, she said, "I have no home anymore, I gave away everything, you told me I was gonna die."  And she had to go live with her parents again.  That was 10 years ago and she's still walking around and is just fine.  There are no Alzheimer's survivors, there are no dementia survivors.  It's an absolute 100% death sentence.  You are more likely to get eaten by a great white and win Powerball on the same day than you are going to recover from Alzheimer's and be 100% fine.

Monday, August 06, 2012

Another Award for Had a Dad Alzheimer's Blog

I've won another award for this blog.  I am humbled, really I am, that my rantings and musings can help others. says of this site:

The award-winning “Had a Dad” Alzheimer’s Blog is a wonderful pit-stop for any caregiver needing a breath offresh {sic} air. This blogger’s opinionated, no-nonsense view of caregiving, dementias, and life after Alzheimer’s leaves readers feeling strangely comforted. A healthy dose of humor and sarcasm make this moving compilation of news and personal stories a true joy to visit.
So go ahead: read, laugh, learn, cry, and feel better in the knowledge that you have blogs like this to help light the way. Take advantage of her wisdom and advice while she still has the patience to give it!

Wednesday, July 25, 2012

Alzheimer's song

Someone sent me this video of a song about Alzheimer's.

Hi Bert, I saw your 'Alzheimer's Dad' site. I'm a musician &; we recently completed an Alzheimer's-themed Music Video in Oregon. It's called 'The Forgotten Man' & is dedicated to my grandparents, Stan & Alma & others afflicted with the disease. Stan became 'The Forgotten Man' once Alzheimer's took hold of his wife. If this video & song can serve a purpose for anyone, please feel free to post or share. The link & lyrics are below. Thank-you for your time, Pennan. (sorry for the long lyrics...)

'The Forgotten Man' by Pennan Brae


It’s another rainy night
In this cold shore-lined town
Water beads down my window
Dies without a sound

Leaves fly through the sky
Trees dance back and forth
Winds announce their presence
Howling from the North

Sit here silently
Watch the scene unfold
Grown man weeps utterly
Can’t believe what he’s told

His girl of fifty years
Can’t recall his name
Eyes the storm outside
Feels the anger feels the pain

If you don’t mind
Just sit low
Tell you a story
You’ll want to know
‘Bout the old man
Whose love forgot about him

He was an old man
He didn’t understand
What happened to the woman
Whose life he gave
What happened to the woman
Who forgot his name

Thunder softly speaks Past the lightning of the sky
Sunshine rays stray slowly in
Once clouds take heed and die

Hurting tears always fall
Past the strike of the heart
Tears of joy overcome
As the darkness departs

Sit here with hands in lap
Tears flow from his eyes
Want to give him all my help
Just a boy am I

He’s seen the world at war Times that caused him strife
His soul is hit again
He loses the love of his life

I’m sorry man but I don’t know what to do
I wish that I did ‘cause I feel bad for you

Though I see not the years
Of wisdom that you do
Reunited you will be
Forever in your youth

Tuesday, July 03, 2012

dementia from the inside

I'm a fat person.  Usually that's not very relevant to this blog and thus doesn't get mentioned much.  I lost almost 100 lbs on my own but now I gained back a little so one of my doctors has sent me for "medically supervised weight loss" which basically means shakes and bars and hardly any "real" food--and no carbs.  I'm eating maybe 500 calories a day.
I don't do well on low carbs.  I get really sick.  I call it "carb dementia".  And of course, with no carbs and no calories in me, and exercising 5-6 thousand calories a week, I'm very sick.  And I've figured out why it's so very scary for me to be this sick.
I feel like, if I ever get Alzheimer's, this is what it will be like Except that I can't eat half a tortilla and feel better if I have dementia.  It will be like this all the time.  And when I have carb dementia, I know it. Just like my dad knew that something was wrong with him.
I know that:
  • I am stupid  (my brain is hardly working)
  • I am not comprehending everything I read 
  • When I write, I don't always make sense 
  • My spelling is horrendous (worse than usual) and I don't recognize it if I don't have a red line telling me
  • Simple tasks like assembling an air conditioner, office chair, or IKEA furniture are nearly impossible
  • My hands shake when I try to do precision tasks
  • When I talk, I can't remember words or names (expressive aphasia, what my dad had)
  • I can't remember the point of what I'm saying by the time I'm done saying it
  • I'm perpetually exhausted and have to nap like an old person
  • My moods are bad; I am mean-tempered and utterly lack patience 
  • I am depressed; I cry a lot and sleep a lot and have no motivation to do anything
  • I stumble over everything when I'm walking, even things no sane person would trip over like a piece of paper
  • If I exert myself (such as shopping in a poorly air-conditioned store) I start to grey out and get tunnel vision (I work out in a pool so I don't overheat)
The thought of living like this the rest of my life is terrifying.  The doctors want me on this diet 18-20 months.  That's almost 2 years.  There is no way I can get a job or even look for one when I can't even rub two words together most days.  When I have to take a nap like an 80 year old after the slightest exertion.  When as part of this diet I have to eat their bars and shakes every 2 hours on a tight schedule.
For instance, it took me well over an hour to compose this blog post. It should have taken 20 minutes.  I have no idea if it makes sense.  There aren't a lot of red lines so everything is probably spelled correctly.
I have to wonder if it's worth it.  To give myself temporary diet-based dementia so I can live long enough to get real dementia. 
(image source)

Sunday, June 24, 2012

Alzheimer's Navigator

The Alzheimer's Association recently started a new website called the Alzheimer's Navigator.
It's for both families of those with dementia and those with dementia.
From the get started guide:
  • Complete the Welcome Survey

    Are you caring for someone with Alzheimer's or living with the disease yourself? What sort of challenges do you face on a daily basis? Answer these questions to help identify your needs and interests.
  • Answer focused surveys

    Based on your responses to the Welcome Survey, we will suggest additional surveys focused on the topics you want to know about, covering everything from care to safety to planning for the future.
  • Receive a customized Action Plan See sample

    We'll deliver a tailored plan in an easy-to-use format.
  • Implement your plan with help from local resources

    One click takes you to local community resources ( to help you complete your Action Plan.
I highly encourage everyone to try out this free, valuable resource.

Thursday, June 07, 2012

successful vaccine/treatment for Alzheimer's

I was going to write about suicide today (a guy I know killed himself last week), but then I found an article that made me cry in a different way.  Scientists in Sweden have a vaccine that works for Alzheimer's disease that is also a treatment for mild to moderate AD.
I'm going to say it again, a little louder.

Scientists in Sweden have a vaccine that works for Alzheimer's disease that is also a treatment for mild to moderate AD.

The prevailing hypothesis about its cause involves APP (amyloid precursor protein), a protein that resides in the outer membrane of nerve cells and that, instead of being broken down, form a harmful substance called beta-amyloid, which accumulates as plaques and kills brain cells.....The new treatment, which is presented in Lancet Neurology, involves active immunisation, using a type of vaccine designed to trigger the body's immune defence against beta-amyloid...modified to affect only the harmful beta-amyloid. The researchers found that 80 per cent of the patients...developed their own protective antibodies against beta-amyloid without suffering any side-effects over the three years of the study. The researchers believe that this suggests that the CAD106 vaccine is a tolerable treatment for patients with mild to moderate Alzheimer's. 

please, please, please let this be true. let this scourge end.

Monday, April 23, 2012


Today I was sitting in a restaurant, eating, and a text message came in on my phone. I thought it was my husband responding to an earlier message from me, and it wasn't.  It was from a really good friend of mine, whose adult son has cancer, and the message was to let me know that his time had come, any minute now.  Maybe even as I'm writing this, who knows?  The second part of the message was to ask me to spiritually be part of her son's transition team.  She also asked for my dad's help.
I was sitting there just crying over my food and the waitress came over and though the food was wrong (again, it had already been remade once) and I told her what I'd just learned and she said "Do you need a hug?" and she hugged me.  It was so sweet.
I'm so sad for my friend, but at the same time I am so honored that she took time out from being with her son for the last time to think of me and to invite me in.  And invite my dad!  If there is ever a time in the world to be completely selfish, it's when you're watching someone you love die.  There is no room for anyone else there.  And she let me in.  She asked me in.  I'd go there if I could, but she's hundreds of mile away, and she's got 7 other children plus some grandchildren--no room for me to be there physically, that's for sure.
A transition team is basically anyone who is there, in body or spirit, to help someone transition between worlds.  You could work with women in labor, welcoming their new babies to this world, or with the dying, saying goodbye.
I wrote back and told her of course I'd be there with her in spirit and I assigned my dad and grandma and all the pets and whoever else is up there to welcome her son home with open arms, to bring him into the Elsewhere Bar and teach him what's what.
I'm so sorry for her loss.  Not having any children, I can't imagine the pain of losing one.  But I know how much it hurts to lose a beloved pet, and I'm sure it's 100x worse if it's your human child.  She had sent me a message in the fall saying that he was doing really bad and in a lot of pain, and that he, and everyone else, was praying for his pain to end, for him to die.  I know that feeling all too well, and the combination of relief and grief that will follow upon his death.
(image source)

Tuesday, March 13, 2012

Dichotomy in Death

No, Dichotomy in Death isn't the newest JD Robb futuristic thriller.  It's the subject of a discussion I've been having on and off via text all day with one of my friends.  Her grandma just died.  Today marks 4 weeks since mine had her (ultimately fatal) stroke (tomorrow is the 4 week anniversary of her death) so death and dead grandmas are still a sensitive subject for me.
My friend's grandma came to death via a different path than mine.  She had cancer and supposedly had it beat, but then she started acting strangely, as if she had some dementia starting.  My friend's mom thought that the cancer had metastasized to her brain.  She started to lose weight at an alarming rate because she stopped eating.  A couple of days ago, they had to bring a hospice nurse into her home (she lived with one of her children) because she was too sick and weak to be moved to a facility, and now she's gone.
And my friend is facing the same quandary that we went through with my dad and my grandma.  That you love someone, and wish she would stay with you forever.  That's the selfish part, of course, because at the same time, this person you love is sick and suffering and in pain.  You want the pain to end for both your sakes.  So you feel bad for wanting the person to die, and selfish for wanting them not to die.
But when the pain inevitably ends in death, you continue to feel horrible.  Because you are glad the pain is over and the suffering has stopped.  And you are sad, so sad, that your loved one is gone.
And of course my friend had the other side of the coin in a different way.  She had a few days to say goodbye to her grandma and know her grandma heard and acknowledged it for what it was.  My grandma was gone when I said goodbye.  Maybe her spirit was hovering in that hospital room and heard but I don't think so--it fled the night before, trying to fulfill my mom's wish to find her mother dead peacefully in bed.  And with my dad, well, from day to day we never knew if he really understood who we were and we didn't know when if ever he'd die so how to say goodbye in that case?  The last time I saw him, about 15 hours before he died, I told him to go and said goodbye but he was so far gone, stage 4 Alzheimer's, brain damage, MRSA burning through him out of control, that he didn't know.  He didn't hear me either. 
That's why I can't be an atheist.  People have to go somewhere. If energy can't be created or destroyed, they have to be around in some form.  They have to know their children and grandchildren and loved ones have conflicting feelings about their deaths.  They have to still be here.  Otherwise, what is the point?

Saturday, March 03, 2012

it's nice to be appreciated...

It included a code for a prize.  I got a filtered water bottle.  Not sure if it will be Alzheimer's Association branded or not but it was a nice gesture.  I didn't expect anything, honestly.

Friday, March 02, 2012

sometimes death is okay

I've had a couple of weeks to think about my grandma dying and I've had to tell a lot of people.  And I've found that their sympathy is almost unwanted because the more I think about it, the more it's okay that she died.  It's not that I don't miss her--for instance, today I saw a friend of mine; he's an artist who is helping me with my next book.  His boyfriend is some kind of cousin of mine. I was going to ask some questions about my "cousin's" family to figure out the exact connection and then I realized that it was useless as my grandma was the one who would have known how to figure it out.
It's weird to visit my mom and her house is empty and quiet, no loud TV, no running water and flushing toilet.  It's even weirder for my mom, who never lived alone before.  We went through Grandma's things and I felt like a ghoul every time I wanted something. I took a doily she made, some plastic storage containers, and a potted cactus plant that belonged to my grandpa.  I'm selling her furniture on Craigslist.  My mom gave away all the extra afghans my grandma had made to a nursing home, and also gave them her collection of canes.  Her decent clothing went to a local place that helps homeless people.
And it's all good. I don't understand hoarders, who when someone dies clutches all their things tightly.  My grandma loved to give away her afghans.  To keep them (and not use them) would be disrespectful.  To know that someone is warm because she is wearing my grandma's jacket or sweater makes me feel good. My dad's clothes went to charity too.  I kept one shirt, a green one he really liked.  I don't need 12 garbage bags of clothes and stuff to remember my grandma and dad, and having those 12 bags wouldn't make the memories I have any better.  This blog is a much better resource and it only takes up cyberspace, not closet space. 
It is okay that my grandma died, for a few reasons.  She was, basically, 94.  She was fairly healthy and dementia free.  And she chose the method of her death by not taking her medicine.  Only the very last day, maybe not even 24 hours, were "bad" in the sense that she'd had the massive stroke and yet not died yet, but since she was gone (brain dead) that barely even counts.  When I tell people that, they are okay with it too.
And then I think of my dad.  It was beyond okay when he died, it was good, it was a blessing, but it was still wrong He was only 67.  He never enjoyed his retirement.  His last 6 weeks he was in agony, just far enough from being a vegetable to be in pain.  His death was a relief, a release, for all of us, and in that way it was also okay.  But in the bigger scheme of things, a man barely in his 60's should not have dementia, he shouldn't go from diagnosis to death in barely 4 years, he shouldn't brutalize his wife and forget his daughter and forget how to talk and how to read.  There is nothing that is okay about early onset Alzheimer's (or any kind of dementia).
People who don't have a loved one with dementia cannot understand how the families of patients, toward the end, pray for death.  They think they would never ever wish for someone they loved to die. (They probably haven't seen end-stage cancer either, in that case.)  People who have been there, done that, we all just nod and say, "it's okay to feel relieved.  I get it."
The day my grandma had her final stroke, news came out about a cancer drug that reverses Alzheimer's like symptoms in mice.  I try to remain hopeful, because someday I might need that drug.  I don't want the final entry in this blog to be about how it was okay for ME to die.  But perhaps someday that will be the case.

thank you for the votes!

I'm a finalist.  Up to the judges whether I win or not now.

Friday, February 17, 2012

Losing Grandma, part 4

Last night I was not a good granddaughter.  I'm not perfect.  There was a flash mob at a local bar for my high school class and I went. I was only going to stay an hour and I didn't get home until midnight.  A lot of people knew about my grandma from Facebook and gave condolences.  I was still sick too.  But I missed the formal reunion in 2007 when my dad died; I didn't want to miss an informal one because of my grandmother.  Staying home wouldn't have made my grandma alive again.
I did write the eulogy before I left.  It was hard to sleep when I got home, I was keyed up from drinking a lot of ginger ale (sugar--I usually drink diet Pepsi) and from seeing so many old friends.  When I got up this morning I went to print the eulogy and my desktop computer had crashed and my laptop (where I wrote it) isn't connected to the printer.  It's still crashed; I had to print from my husband's desktop.  Another thing to deal with.
My husband has caught my illness and I feel really bad about that.  So he was home sick in bed while I was out with my old friends.  This morning he was dragging and had to deal with dressing up and driving me and my mom to the funeral home at 9 a.m.
Grandma looked great in the casket.  The funeral director had plumped out her cheeks a little and she actually had a smile on her face, like it was a big joke that instead of celebrating her birth we were celebrating her death.  I think she looked so nice because she didn't suffer.  She was basically dead at my mom's house and they just kept her body alive for another day.
The visitation/service was very nice.  A lot of people came, probably close to 50.  Only one of my friends, but I didn't expect anyone to take time off from work.  My mom's work friends and walking friends and best friend.  My mother in  law and my husband's sister and her fiance.  My mom's cousins and some of their kids.  A few of my grandma's surviving friends. One of my cousins is now a hair dresser and is going to do my hair--it's freaky because she was born when I was in high school or college, I could be her mom.  I think she's the youngest of our generation.
And one surprise.  My grandpa had one sibling left, his sister Elsie.  I wanted to find her.  I did find her online in North Branford but I don't have a North Branford phone book and my mom said not to pursue it because she wouldn't come.  My grandma had sent her a letter and never gotten a response.  I felt really bad about not calling her; I thought she'd want to know her sister-in-law had died.  Then toward the end of the viewing in walks this tiny ancient lady with a cane, being held up by her son, and my mom almost fell out of her chair.  It was Aunt Elsie.  I hadn't seen her in probably 20 years, if not longer.  Obviously she saw the obituary in the paper.
The priest knew my grandma and I was really expecting something great from him, but he read basically the exact same thing as the chaplain did on Tuesday--my father's house has many mansions and the new version of the 23d Psalm which hasn't got the resonance of the King James version. Nothing personal. We invited him for lunch but he declined.  I read my eulogy (below) and then her brother spoke extemporaneously, from the heart, about what a hard worker my grandma was, how his earliest memories are of her going off to work at a shirt factory where she was paid piecework to pin and iron shirts, standing up all day, to help support the family during the Depression.  He talked about special foods she used to make--icebox cake and fruitcake--and how he looked forward to eating both, as they both had to mature before being eaten.  He did choke up a few times but ultimately he was okay, as we all are.
The service at the grave site was very short, basically just a prayer of farewell.  She's with my grandpa again, body and soul.  There's one spot left in the plot for my mom (and my dad's ashes).
The food at the restaurant was very good, we had about 20 people at 4 tables and everyone enjoyed everything.  We stayed there about 2 hours.
Now I've got to bring my cats to the vet, and my mom's going to come along, and we're going to make a side trip back to the cemetery to take some of the roses.
Rest in peace, Grandma.  I love you.  Say hi to my dad and Grandpa and Aunt Bert and everyone.  Hug and kiss all the animals.  

The last time I talked with my grandma was Sunday night.  She seemed to be in a good mood.  We were playing a word game, and when my mom took the letter she wanted, my grandma sassed her, saying “Oh, why don’t you just go home!” and laughing.
We made plans for her 94th birthday next week.  She didn’t care that she was going to be 94—“It’s just another day” she said.  I asked her where she wanted to go eat on Friday—today—and she waved her hands and said “I’m happy to go anywhere” and we decided on Red Lobster because she likes the shrimp.  But then I guess she made other plans without telling me, and she’s having lunch somewhere else today, without us. 
My grandma was a generous woman.  She worked a Mike-Rowe-worthy dirty job at a cigar factory for almost 30 years (and because of my exposure to that cigar factory, I will always love the smell of raw tobacco) and never complained even when her hands turned yellow from handling the giant bales of leaves.  At night, with those same tired discolored hands, she would knit, crochet, sew, and tat the most incredible lace.  When she retired, she donated the skill of her hands to the North Haven Senior Center.  They would give her material and yarn and patterns and she’d make quilts and lap robes and bags and funny little dolls for them to give away or sell.  Some of the material and yarn was ugly and yet she put the same care into the finished product as she did with the prettier goods.  My hands look just like hers, but I was never able to pick up even rudimentary knitting skills, unfortunately. 
My grandma taught me not to be afraid of ghosts.  That sounds weird, I know.  But when I was little, my grandparents moved into a haunted house.  It was not an old creaky spooky mansion, just a regular ranch house where the previous owner had died, but not moved on.  Her name was Mrs. Winters.   Mrs. Winters would walk up and down the cellar stairs and rattle door knobs and that was about as menacing as she ever got.  In fact I believe she was a kindly ghost, because when I slept there, she would cover me up.  I was never afraid of her because my grandparents were so matter-of-fact about her presence. I suppose I thought everyone’s grandparents lived in a haunted house.  I believe that when my grandpa died there, he took Mrs. Winters with him, because I never felt or heard her again.
My grandma was quirky and generous.  When I was a teenager, she sat me down and said if I ever wanted to try a cigarette or to drink alcohol, she would buy it for me and share it with me.  She didn’t want me sneaking around and getting in trouble.  I think that’s exactly why I never did—because of her offer.  It might not have been “cool” to smoke or drink with Grandma, but I never felt the urge to sneak booze with friends either.
I had a bad cough every winter for most of my life, and she made me a bottle of homemade cough medicine.  She drew a label that looked like a pharmacy sticker, with infinite refills and the ingredients.  She liked everything to be hand-made when possible.  When my friend had a baby a few years ago, my grandmother crocheted a receiving blanket as a gift.  My friend entered it into the Durham Fair, and it won a prize, which she gave to my grandma, who was shocked that anyone would think her simple blanket was worth any honors.
If you know me well, you know I inherited something else from my grandma besides her hands.  She was stubborn.  When I was little, she had a fancy red coat.  When something happened that made her angry, she spoke up. She’d put on that coat and go to whatever place she was upset with, and speak her mind.  When we said Grandma was “putting on her red coat” we meant “going on the warpath.”  I don’t have a red coat, but I’ve been known to venture down that warpath a time or two!  My grandma’s red coat is long gone, but she never stopped speaking her mind or being stubborn.  When her doctors told her to take her blood pressure medicine or she would have a stroke, she said she didn’t care.  She made her choice.   She was ready to go.
She lived almost 94 years.  She had slowed down a bit toward the end, but she was still mentally agile—when I took her to the bank recently, her checkbook was only off by less than a dollar—and she didn’t need help with anything.  Only her very last day on Earth wasn’t a good one, and trust me, it was only a bad day for her body.  Her soul was already gone.  She had 34,324 good days and who can ask for more than that?

Lena Gresto Nana
February 23, 1918
February 15, 2012