"Had a Dad" Alzheimer's Blog

Stick N Find Bluetooth Location device

2013-05-08T10:39:00.004-04:00

I just found this product through a post on, of all places, the I Can Has Cheezburger (LOL cats) site.
If my dad was still alive and at home, I'd be Fry from Futurama: shut up and take my money.

Basically, the StickNFind is a tiny round sticker that you can place anywhere. You use your i-phone or Android phone to track the location of the sticker. If you lose your keys, for instance. Or you can put it on your pet's collar, stuck to a tag. Or your wandering dementia-ridden dad. When you are within 100 feet your phone can find it. If your phone can't find it, you can set up an alert that goes off when the tag comes within range, say, if you are driving around looking for said pet, or dad.
The battery lasts for a YEAR and it's just a simple watch battery. They are 2 for $50 and come in many colors. And it's a one-time fee (except for the batteries), no monthly upkeep charges.
I've talked about GPS shoes and watches and things before, but this is very versatile. It just doesn't have a great range. For what it is, the price isn't outrageous. The biggest hurdle may be the smart phone. I only got an Android phone a few weeks ago, and there is no app for any other operating system except Android and i-phone.
You can use the app to make the sticker flash or buzz (if your keys are lost in the dark).
You can create a "virtual leash" which tells you if the sticker gets too far away from your phone. This is for pets. Of course if you aren't at home and your pet gets out of your house, that isn't very useful.
The same company puts out a slightly bigger device called a BluTracker that has a range of half a mile and a battery life of 2 months (rechargeable). The pictures it looks to be about the size of a package of dental floss. It has the same features as the sticker, plus a little more. It can be pre-ordered for $70.

Note: This is NOT a paid advertisement, just a product I found that I think would be useful to the Alzheimer's community.

bad burn for my mom :(

2013-04-10T18:09:00.002-04:00

I took my mom out yesterday for her birthday and she mentioned that her internet connection was down. Which of course was my fault because I was tinkering with her Wifi on Sunday (which isn't the connection she uses for her computer--she uses a wire right from the modem). So I felt bad, which was her intent, and today I stopped by in the midst of errand running to see if I could figure out what was wrong. Turns out I did nothing wrong and it was the modem and I had to call AT&T to get talked through fixing it.
While I'm on speaker phone, my mom casually says, "Hey look at this," and shows me her arm. She was wearing a white long-sleeved top. Under the sleeve was a bandage--on her whole arm--and it was oozing fluid through the bandage and through the sleeve. I was dumbfounded. She said, laughing, that she put a hot cup of coffee on the couch arm and the cat knocked the whole thing over her arm and she didn't want to bother me. So she went to see her friend who's a CNA in the morning (happened at 8 last night) and her friend wrapped it up and they put over-the-counter salve on it.
Her CNA buddy should have known better.
As soon as the modem was fixed, I made her go to the emergency clinic. She unwrapped her arm and showed them. It looked like raw meat from just under her shoulder to her wrist, all around the whole arm. She said it didn't blister, the skin just "fell right off." Apparently the only bad burn is a blistered one?   Clear fluid was just weeping from it steadily, literally dripping from her elbow and fingers like she was standing in the rain--they had to give her one of those diaper-like pads to put under it to catch the fluid. Honestly it was completely disgusting and there is no way if that was my arm I wouldn't have been at the ER or clinic as soon as it happened.
I told her the doctors were going to give her antibiotics, maybe a shot, most likely a pill, and prescription burn cream. The over-the-counter burn cream is for when you have a little 1st degree burn that's a couple of square inches. Honestly her burn is square FEET and third degree.
I wish my grandma was still alive because she would have called me, like she did when the dog attacked my mom and she drove herself to the ER last summer. Instead I found out by accident. If I hadn't gone over spontaneously to fix the computer, I never would have known and she wouldn't have sought treatment.
And my mom is sane. She hasn't a hint of dementia. I don't know what her excuse is. Being strong and not wanting to bug someone is stupid when it comes to a serious life-threatening injury like a 3d degree burn over an entire limb!
The women in the office at the clinic were dumbfounded as well to hear that my mom thought this burn was no big deal, mouthing to me behind her back that it was a good thing I'd dragged her in.
Two doctors consulted over it. The only good thing they had to say was "at least it's not charred." I had to learn how to clean and bandage this oozing raw mess, twice a day until Saturday, when she has to go back and find out if she's got to go to the burn unit. Yes, burn unit. And she wasn't even going to go to the doctor's office until I forced her!
We had to get prescription cream, and not a tube of it, but a TUB, and prescription pills. Then we had to buy all kinds of bandages, gauze, tapes, and everything needed to bandage the arm 4 more times.   She kept insisting she felt fine and she wanted to take me out to dinner. I had a run one more errand and then we stopped to eat. She started to shake, going into shock, and we ended up getting the food to go and going home so she could take more pain killers and go to sleep.
I'm really worried.   This is one of those times I wish I had a brother or sister to help. I guess i should be glad my dad isn't around to see this because he'd be completely freaking out. And he'd grab her arm, I can't imagine how bad that would be. I am shuddering to think that I have to touch it, clean it, salve it, gauze it, bandage it, then sleeve it 4 times in the next two days.

my cat and my dad

2013-02-21T12:30:00.000-05:00

My rescue cat, Romeo, was doing something today. I don't even remember what it was--begging for food probably because he's on a diet. But for some reason I thought about my dad and tried to remember what my dad had to say about Romeo.
Then I realized, he never met this cat.
And that made me feel really, really sad.
I got Romeo almost 2 years ago shortly after his 9th birthday. He had had, as well as I can tell, 5 homes in the last year (before that, 1 home). He was afraid of everything, with severe PTSD to the point where he had to be sedated for six months or have a fear-induced heart attack. He's got some poor litterbox habits (hence the "shaming" picture). But now that he's figured out we are keeping him even if he has litterbox issues, he is really sweet and loving and adorable and I am totally his "person" and he follows me around and constantly rubs his head on me so the other cats know I am his.
I think my dad would have liked him.
But realizing that, although Romeo is 11 years old and dad's been gone only 5 years, they never met, made me think of everything else my dad will never see and never know.
That made me alternately sad and angry. I don't MISS my dad much anymore, but when I do, it always knocks me for a loop. And I have to wonder if I'm angry because he died or if I'm angry at how he died. Would I have felt such anger, started this blog, if my dad had cancer, or died of a heart attack (what probably would have happened without the Alzheimer's, since he had at least 1 heart attack that we know of while he had dementia. I don't think so.

Alzheimer's Aunt falls down

2013-02-14T18:38:00.004-05:00

The view from my font window; beyond the fence
is a sidewalk and on the other side of the tree is the street.

Unless you've been living under a rock, you know that we in New England just got walloped with a huge snowstorm. My town got 38 inches of snow in one day and at one point supposedly snow was falling at 6 inches per hour. Lotta snow.
If you want to watch it in action, there is an awesome video (less than a minute) in time-lapse.
So you can imagine what it was like to shovel out of this insane mess, even with a snowblower.
After 3 days, I finally got my car out. I called my cousin and said "I'm venturing out, does your mom need anything?" The reply was "well she's not shoveled out so she wouldn't be able to get anything you brought." Okay.
I called my own mom who said she was going to walk to Wal-mart to buy dog food. I told her no, that I would buy it and bring it. But her street wasn't plowed yet (cul-de-sac) and neither was the street leading to it. I convinced her that the dog could survive on just dry food for a few days and set off on my own adventures.
Of course who do I see wandering down the street on foot, clutching a bag of dog food? MY MOM! I get her into my SUV and get her as close to home as I could (not very, unfortunately) and promised to take her to the store for real the next day if the street's still unplowed.
The next day I am waiting for her to call me about going to the store together and my cousin calls wanting Alzheimer's Aunt dug out and driven around. Of course everyone has a million reasons why they can't do it and I have to. I was pretty angry; I said "I've got my own mom to deal with, her street isn't plowed and neither is the street that's attached to." So then I had BOTH of them in the car. And later my mom complained how bad Alzheimer's Aunt STUNK. She REEKED. It's her breath, like death, like a dead animal under the porch in the summer, combined with an unwashed body and dirty clothing.
My mom was actually coming over my house after shopping to help me dig out my husband's car, so he could finally go to work rather than keep working from home. So that's my mom, who does stuff. In contrast, this is Alzheimer's Aunt once she's in the car:
"I tried to go outside and I fell down."
I just clamped my mouth shut. When there's almost 4 feet of snow, it doesn't make you fall down. It holds you up.
"I couldn't get up, I laid in the snow for 15 minutes."
I just don't believe her. I don't believe she even went outside.
"No one came and shoveled my sidewalk."
Finally I spoke. "Who did you think would come when every road in the state was closed?"
"I thought my neighbors would do it."
"Did you ask them for help?"
"No."
"Then why did you think they would shovel for you?"
"They would see that I didn't shovel."
Well, for all they knew, you weren't even HOME. And I bet if she had gone outside and made the slightest effort and others were outside shoveling, someone might have come over and asked if she needed help. Sitting in the house, no doubt with the stuck-out lip face, pouting, isn't how you get your walk shoveled.
I announce, rather loudly and passive-aggressively, that I need gas for my car.
The silence is deafening.
So I have to shovel you out and drive you around but you can't pitch in for gas money?!
The next day, I was talking to my cousin about her. I learned that Alzheimer's Aunt has spent approximately $6,000 in the last few months that can't be accounted for. Part of it may be her house taxes, but even if she paid the whole year, that wouldn't be that much money. I said, "Do you have power of attorney? It's simple. Invoke it. Take her checkbook, take all her credit cards. Call QVC and cancel her account. Have new credit cards issued so any cards she has saved online (like at Amazon) won't work. Go to the bank and say that she cannot take money out of her accounts anymore or get any loans. Give her $200 cash for groceries and nothing else." Then my cousin said that Alzheimer's Aunt has been going to her bank and opening $5,000 lines of credit like they are free money. She has a mortgage on the house (she's lived in it for over 40 years) too, we don't know for how much or what she spent that money on. But no one wants to invoke the PoA and "deal with all that" so they will let her spend herself into the ground.
I suggested (I know I'm not supposed to suggest) that it's time she move into senior housing. "No, it would cost more." I did the math and I think it would be significantly less. The mortgage payment is about what rent would be. She would no longer have to pay house taxes, water/sewer, oil, gas, or electric. How would it cost more? Oh, but she can't live in a simple 1 bedroom senior apartment because she's got a 3 bedroom house hoarded to the brim with stuff she won't give up.
Is she going to the doctor anytime soon? Getting tests? Anyone care what's really wrong with her expect me, the person she cares about the least?
Nope.
It's all very sad.
Also, in an aside, 1 year ago today my grandma had her (final) stroke and we pulled the plug. I will write about her later.

alternate universes, or the "maybe" game

2013-02-04T13:39:00.001-05:00

For some reason I started thinking about alternate universes today. Forgive my lack of scientific words, but there is a theory (not science fiction or fantasy, but a real actual scientific idea) called a Multiverse, that posits that everything that ever could have happened, did happen, just in some other world that lies parallel to ours. That makes me wonder if that place (those places) are the afterlife we dream of and hope for. In some of those worlds:

My dad is still alive and clear-minded and we visit Aunt Bert every Friday because she is also alive and clear-minded at 94 years old.
My grandpa didn't die of cancer 25 years ago.
My grandma didn't have a stroke a year ago.
I am thin.
I am a paleontologist with a dinosaur named after me and I have held the claw of a raptor and the tooth of a t-rex.
I have run my fingers through a tiger's fur.
I have written best-selling novels and I hobnob with famous writers.
I am working with elephants so I can clone a mammoth.

That is something that can sustain me. Every once in a while, I get a hint of cross-over, I feel like just there, so close I can touch her, Another Bert has done something amazing, and I get an echo. Maybe on days that I feel sad for no reason, something bad has happened to one of my Others. My pet lived, but hers died. She has lost something that I got to keep. And I have lost so much, and perhaps they kept it. (They can all keep the weight I've lost, that's for sure.)
I am reading Terry Pratchett's newest book, Dodger. To think this came out of the mind of someone who was diagnosed with Alzheimer's 5 years ago is amazing. I know he has some help writing now, but his voice is still strongly there. And maybe, for this world, the trade-off was my dad died and Sir Terry got to live. Maybe in another world, my dad lived and they lost Terry Pratchett.
We should know all this, shouldn't we? We are living in the future, aren't we? The original Cyberpunk game was set in 2013 (then moved to 2020 and now it's being reborn in 2077). 1984, 2001, they were all supposed to be amazing futures. Cell phones are amazing, the internet is incredible, but where are the flying cars? Why don't we live on the moon? Why don't I have a port in my head to connect my computer? Why don't we have awesome cyborgs and laser weapons?
Why can't we see into those other universes? Just to KNOW, not to communicate. Even if he's dead now of a heart attack, to know that somewhere my father didn't suffer and die as a virtual vegetable. That my garden is beautiful because my grandpa lived long enough to help me with it. That maybe everyone I know who is boring and ordinary, like me, is extraordinary somewhere else, even if it's only on one world out of a million.
Maybe there are other worlds where dementia and cancer don't exist or have been cured. (I imagine they are even more grossly overpopulated than this world, though.) Where there are no Alzheimer's blogs or awards for them because they aren't needed.
And maybe in all of them, my dad is dead. I don't know if I'll ever know. But I like to think that it's possible he's still there, somewhere, even if it's just at the Elsewhere Bar.
(image sour ce)

click to give $10,000 to Alzheimer's

2013-01-31T15:13:00.003-05:00

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!

two more awards, need more votes!

2013-01-23T09:44:00.000-05:00

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

2013-01-23T09:42:00.001-05:00

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.

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+.

please vote for this blog!

2013-01-08T21:39:00.001-05:00

You can vote once a day, until February 15.

Healthline

5 years gone, and Alzheimer's Aunt strikes again

2012-12-01T14:18:00.003-05:00

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.

Alzheimer's Aunt in Limbo

2012-10-30T20:09:00.000-04:00

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

2012-10-30T19:29:00.001-04:00

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 NursingAssistantGuides.com 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: http://nursingassistantguides.com/senior-living/We 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.

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

2012-09-25T10:10:00.000-04:00

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.

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

2012-09-21T19:23:00.001-04:00

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.

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

2012-09-17T18:52:00.000-04:00

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?)

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

2012-09-11T12:57:00.004-04:00

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.

I don't wanna

2012-09-03T19:14:00.000-04:00

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

2012-09-03T17:22:00.001-04:00

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.

Alzheimer's Aunt?

2012-09-01T11:33:00.002-04:00

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."
(confusion)
"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.

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

2012-08-17T13:28:00.000-04:00

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.

Another Award for Had a Dad Alzheimer's Blog

2012-08-06T18:49:00.001-04:00

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

Healthline.com 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!

Alzheimer's song

2012-07-25T18:34:00.006-04:00

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

http://www.youtube.com/watch?v=tyY5y7Eiyr4

Lyrics:

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

dementia from the inside

2012-07-03T14:24:00.001-04:00

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)

Alzheimer's Navigator

2012-06-24T21:55:00.000-04:00

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 (www.communityresourcefinder.org) to help you complete your Action Plan.

I highly encourage everyone to try out this free, valuable resource.

successful vaccine/treatment for Alzheimer's

2012-06-07T21:54:00.000-04:00

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.

"Had a Dad" Alzheimer's Blog

Stick N Find Bluetooth Location device

bad burn for my mom :(

my cat and my dad

Alzheimer's Aunt falls down

alternate universes, or the "maybe" game

click to give $10,000 to Alzheimer's

two more awards, need more votes!

Xmas and Alzheimer's Aunt, and more awards

please vote for this blog!

5 years gone, and Alzheimer's Aunt strikes again

Alzheimer's Aunt in Limbo

top senior site award

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

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

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

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

I don't wanna

Alzheimer's Aunt, the continuing saga

Alzheimer's Aunt?

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

Another Award for Had a Dad Alzheimer's Blog

Alzheimer's song

dementia from the inside

Alzheimer's Navigator

Complete the Welcome Survey

Answer focused surveys

Receive a customized Action Plan See sample

Implement your plan with help from local resources

successful vaccine/treatment for Alzheimer's