Sunday, October 06, 2013

Chicken Soup for the Soul; Living with Alzheimer's and other Dementias

I just submitted a story about my dad to the new Chicken Soup for the Soul book, which is dementia/Alzheimer's themed.  I'd like it to be in the book, of course... but if it doesn't make it, I'll post it here.  Wish me luck.

Alzheimer's Aunt: A diagnosis

Almost two years after Alzheimer's Aunt started showing signs and symptoms of being extremely ill, something has finally been done.

Before I explain that, I want to tell you about my last major encounters with her and her illness.  I haven't been writing about her much because frankly it makes me so sad and angry and it's all so pointless when nothing is being done.
Alzheimer's Aunt went on a trip, by herself, cross country, early this summer.  Direct flight (the thought of her trying to change planes is terrifying).  I ended up going along to navigate when one of my cousins drove her to the airport in New York City.
The night before, I talked to my cousin.  "Are we making a Dunkin Donuts run before we pick her up?"  "We'll make it after."  "Um, do you think that's a good idea....?"  They don't like anyone to point out the vomiting so I tried to imply it delicately.  "Oh, she won't eat, it will be fine."
6:30 a.m. we picked her up and headed to the donut shop.  Of course she wanted something.  I stayed in the car with her while my cousin went inside for everything.  He came out with my muffin and her donut, and our waters, went back in for his coffee and hot sandwich.   Alzheimer's Aunt opened the bag with her donut in it and held the donut over the top and proceeded it eat it in the most disgusting manner possible, literally shoving it into her mouth and chewing loudly with her mouth open--nom nom nom.  She ate the whole donut before my cousin came back with the coffee!
We drove out of the donut place heading for the highway about a mile away.  About 150 yards from the Dunkin Donuts, she started to hiccup and choke.  We gave her water and pretty much immediately after that she spewed vomit all over herself and the passenger side of the car and the console of the car.  I was in the back seat looking at the rest of my muffin and thinking how good of an eating deterrent Alzheimer's Aunt is. The car filled with the smell of vomit.  I wanted to cry.  We hadn't even left town yet.
My cousin said, "Don't you think you should go home and change?"
"Oh, should I?"
No, we want to sit in the vomit-filled car with you, while you are covered in vomit, for a 100 mile drive to the airport.  Then some lucky people will sit next to stinky puke-covered you all the way to California.  That will be a real treat for them.  At the other end, your friend will pick you up and you'll get vomit in her car too and won't she be happy to see you then.
She finally agreed to go home and change while we mopped out the car, gagging.
The trip to the airport started 40 minutes late because of this.
All the way there she talked about things that happened over 40 years ago and neither of us cared.  I just sat in the back seat checking WAZE for traffic jams while my cousin used a regular GPS unit for navigation. 
By the time we go to the airport, I really had to use the restroom.  My cousin was extricating Alzheimer's Aunt from the car with all her luggage.  She moves in slow motion.  I was hopping--I need to pee!--while she stood there confused looking at her bags. Finally we started to walk to the terminal.  We had to walk through a glass hallway, then across a street.  I was across the street and at the door (and remember that I walk slow because of a chronic leg problem) and they weren't even into the glass tunnel yet!  Finally they were close enough for me to shout that I'd meet them at the bench by the door after I used the bathroom and I ran before I embarrassed myself.
The bathroom was in the opposite direction from where they went so it took me a few minutes to get to it. When I was done--ahhh--I went to sit at the bench I'd designated.  My cousin wasn't there.  Curious, I walked into the terminal a little way and there they were at the desk with the bags.  An argument was clearly in progress.  I threaded through the ropes past people.  Alzheimer's Aunt was clutching her ticket and other papers asking the same questions over and over.  The attendant looked like she didn't know if she should laugh or cry or get angry.  My cousin wanted to walk her all the way through security and to the gate but without a ticket that's not allowed.  But just as clearly, there was no way she could do it alone.  The gate was a high number, in the 20's, which means she would have to walk  more than 10 gates length of hallway to get to the correct one.   Finally they called for a wheelchair.  A nice man came with the wheelchair.  Alzheimer's Aunt stared at it.  "I don't know," she said, "I don't know how to do this, I haven't been in a wheelchair since I had my children," and stands there clearly vacillating on what to do.  Finally the guy grabbed her shoulder and kinda pushed her down into the chair.  It's a chair.  You sit in it.  How can this be puzzling?
My cousin had to give all kinds of instructions to the guy with the wheelchair.  I was thinking, "he's going to walk her to the gate, dump her in a regular chair, and leave her.  He's not her keeper." but whatever.
My cousin was so exhausted from the long drive and everything that we just sat there on the bench for about 15 minutes not moving.  He was almost crying, saying that he didn't know how she was going to make it through the flight and other airport alone.  But still, not admitting that MAYBE SOMETHING IS WRONG and of course I have to keep my lip zipped and cannot comment or make suggestions.
My hope, no matter how mean, was that in California she would display enough problems that her friends and family out there would demand something be done.
But two weeks later after she was home, no one was saying or doing anything different.  I shrugged, gave up again, went on with my life for a couple more weeks.
Then I got a call at 9 a.m. to go over there and check on her.  I refused.  "She could be dead!  You have to go! She hasn't answered the phone in two days!"  "I don't want to.  She won't answer the door for me anyway."  "You have to!"  "Okay, say I go there and she doesn't answer the door.  So then I call the police and they break in.  If she's okay, they see the hoard and report her.  If she's not, now she's dead and then what should I do?"  "Oh no don't call the cops if she doesn't answer, call me back."  I went there, banged on the door (no doorbell), yelled, knocked, generally was obnoxious.  No answer.  Took out my phone: "she's not answering, was here banging for 10 minutes, your move."  That cousin tapped another cousin to "rush over".
I had a lot of errands to run (which was one reason why I didn't want to waste time on Alzheimer's Aunt's false 4-alarm emergency) and I went and did them.  On the way home, I decided to drive by and if my other cousin was there, to stop in.
No one was there, nothing looked different.
When I got home, I called the first cousin and asked if the second cousin had found Alzheimer's Aunt okay in the house.   The answer?  "She's going over around 6 pm."  Wait, but it was urgent that I drop everything at 9 a.m. and go?  I felt very angry.  Walked away from the situation again.  Found out later that she did indeed hear me knocking but "didn't know who it was" (me yelling "It's Bert!" perhaps should have clued her in?) so didn't answer.

Then last week, everything changed.
First, somehow, some of her local friends got her to a doctor who decided she needed a colonoscopy and upper GI endoscopy to find out what was happening with the vomiting.  I was floored when my cousin told me.  Apparently she'd been vomiting copiously when out with those friends and lying to them saying she didn't have that problem anywhere else.  She said the same thing to the people in California and of course said it to family here.  My thought is that some of the California friends called the Connecticut friends and spurred them into action.  Of course me suggesting that same course of action months ago (look back through my blog and see!) was derided and met with hostility.
I've had a colonoscopy and they aren't fun--but the day before is much worse, when you have to not eat solid food all day and have to drink the 2 gallons of snot-like concoction.  I vomited half that stuff up, what was she going to do?  My cousin said, as if it made perfect sense, that she had to call her mother at 6 a.m. to remind her not to eat that day and continue to call her all day and tell her not to eat and then at night call her about mixing and then drinking the purge.  Any normal person would put a note on the calendar; who needs to be called all day to be told these things?  Again, I bit my lip.
She also had another appointment with an eye specialist.  Don't forget her being blind!  Although the eye doctors all said her vision was perfect, she complained constantly that she couldn't see or read.
Monday one of my cousins called her to remind her that the eye appointment was that day.  Alzheimer's Aunt was even more confused than usual, arguing that it was another day (the day of the colonoscopy) and also slurring her speech.  Alarmed, her daughter raced over there (at least she didn't call me).  One of her friends happened to be in the area and dropped in on her at virtually the same time.  They piled her into a car and drove her to an emergency clinic, where they took one look at her and put her in an ambulance.
She had had a stroke.
When she got to the hospital, finally she had the CT scans and MRIs I'd been saying for TWO YEARS that she needed, since she collapsed.  And, amazingly, the scans showed that she had been having strokes all this time.  And the brain damage was in her visual cortex causing her blindness.  And one of the signs of stroke is vomiting.  And weakness in the legs.  And mental confusion. (see handy graphic)

Now her family springs into action.  They have to be at the hospital with her every minute of every day.  Her copious vomiting is rebranded as "spitting up." (I refuse to say it and get stared at angrily every time I say "vomit" and corrected in a frosty voice "Spitting up.")
Now the house is going to get cleaned.  Now she is going to move out.   Now they all admit how worried they've been for 2 years but didn't know what to do (and wouldn't listen to me).  I really want to be a total bitch and scream I TOLD YOU SO but I won't.  What will it accomplish, nothing.
Now she needs speech therapy and occupational therapy and physical therapy and has to go into a rehab facility for 100 days.  Now she can never live alone again.
That her family quickly went into a weird denial again once she got into the rehab facility.  "Well the therapists say she could 100% regain function, maybe she can go home."  And cleaning gets put on hold.  I ask, "but isn't some of the damage from two years ago?"  "They said they can fix it all."  Glare.  How dare you, puny cousin who knows nothing about anything, say different.
One of my cousins actually said "I was secretly worried about dementia but she just had a stroke, thank god."  I said, "Brain damage from a stroke is called vascular dementia; she did and does have dementia."  Oh, the looks!  The anger!   I just have to be the one who says dementia instead of stroke, who says vomit instead of spit up.
Right now the family's reaction is schizophrenic.  On the one hand, it's all "She had a STROKE, she can't be LEFT ALONE."  On the other hand, "She will be JUST FINE and HOME in NO TIME."
Cognitive dissonance at its finest.
I tried to explain that the nursing home doesn't want family members with her for every minute of visiting hours.  I paid, with my own money, for an MP3 player and loaded it with books and pointedly said, "Now she has something to occupy herself so she doesn't have to be bored and people don't have to be with her, entertaining her, at all times."  They actually said to me that they thought the audio books would DISTRACT her from getting better and they didn't want her to have them. But she was so happy she almost hugged the player.  I fully expect to find it smashed or lost within a week.
Some of my cousins and I went out with some friends right after it happened.  These friends recently had a close family member have 7 strokes in 2 weeks and also had a grandfather in a nursing home for 22 months.  The talk was of Alzheimer's Aunt.  I spent the meal drawing on my napkin and chewing my inner cheek as they said things like "Hindsight is 20/20"  "who could have known something was wrong?"  "if only she had a CT scan two years ago" and other platitudes.  I said all that, all along, and was silenced all along, and now they pretend I never said a word.
Alzheimer's Aunt had to spend a certain number of days in the hospital before she could get transferred to a rehab facility.  A local one agreed to take her and she was moved there a couple of days ago.  Family in constant attendance at hospital and now nursing home.
I got woken up just before noon today with a screaming phone call. "No one was there with her all morning!  Why aren't you there?"  "I'm asleep, I was up late, and I'm about to go out with my mom and I was there until after 7 p.m. last night."  "Well you better be there by 3."  "I won't be home by then."  "She can't be left alone!"  Yes she CAN, she is in a NURSING HOME with professional staff all around her, she is not alone!  If you expect her to go live alone again, you need to give her some space now.
So that's the status as of today.  I'm here writing this and not visiting because I am an evil selfish bitch (yes, I was told that more than once) and everyone associated with Alzheimer's Aunt hates me because I don't do my share (she has several children and direct nieces and nephews, and I'm not one of them, btw--I'm another layer out) and I'm so mean and bossy always telling them what to do.  The fact that I was RIGHT all along, that she needed a brain scan, is ignored.  
I was hoping that once she was diagnosed things would calm down.  But her family seems to thrive on drama. 
(image source)