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.

1 comment:

Unknown said...

I must say, I am so glad I stumbled upon your blog. I am sorry to hear of all the stress you are going through, and I'm sorry my saying sorry won't help at all. But, let me just say this, your blog is refreshing. I value your honesty and unflinching look at life related to dementia. Everybody's experience w/Alzheimer's and dementia is different, but yet, we all experience this overwhelming feeling of,not just stress, but loneliness and isolation. I want you to know, you are not alone! Even though my current famiy care giving days are over (I cared for both of my Grandparents) I still stay connected to the Alzheimer's community by volunteering and I've started my own business aimed at helping caregivers. I really just want to say, "Thanks" for doing what you are doing. I don't know if your family appreciates it (many of my family didn't in my case, but they sure came out of the wood works when the funeral came...go figure), but I will voice what you should hear constantly. "Thanks for being a family caregiver. You are doing an amazing job." I look forward to reading more of your blog as time goes. If you want, check out my blog. I've just started. :)
All the best,
Barbara Worthington
Founder & Owner of Caregiver Cards