No, there's no proof of that, but when you spend hours every day monitoring a parent with a degenerative disease that they haven't proved one way or the other has or hasn't got a genetic component, you get a bit paranoid.

Having done all the research on Parkinson's disease, I know all the potential precursor symptoms. I have many of them! Of course, so do a majority of the average adult population, so it doesn't mean a dang thing....except to that worry-farm in the back corner of my brain.

Here's my worrywart list of symptoms:

My hands will shake when I'm any combination of tired, hungry, and/or stressed.
My legs get twitchy in the evenings sometimes(i.e. restless leg syndrome) which is related to PD.
My left eyelid has been twitching for hours every day for weeks now.
My extremities go tingly or numb a lot easier than they used to when I was younger...the beginnings of neuropathy?
I get constipated sometimes.
I have a sniffly nose year 'round.
My handwriting is not as smooth as it used to be.

Here's my commonsense rebuttals, in order:

Well duh, of course your hands shake when you have low blood sugar and other stresses.
Doing vigorous exercise (like zumba) one day and sitting around the next might do that.
The eyelid is probably related to stress or allergies.
You have low blood pressure, doofus, not to mention longer arms and legs.
Who doesn't when they don't eat enough fruits and vegetables?
You just might be slightly allergic to your cat or house dust, stupid.
And just how much do you actually write anymore? Hard to stay smooth with no practice.

I know I'm just being neurotic. There's absolutely nothing there to take to a doctor that they wouldn't come to the same conclusion as my common sense does. But stress can do strange things to you, including nearly all of the 'symptoms' my worrier likes to point at.

Don't let anyone tell you that caring for an aging/ill parent isn't stressful. No matter how much love and respect there is between you, it can drive you to the edge of sanity. Add to that the pressure from loved ones who thinks said parent should be in a nursing home, as if that would remove ALL the stress from your life...NOT!

Bah. I'm going to go look at pictures of funny kittens now.

Mom, that is.

We had a really fun week a short while ago when mom had a reaction to a supplemental antidepressant that was prescribed for her. She started seeing whole groups of people who weren't there. A dozen middle-aged women and teenagers that chatted amongst themselves and kept wandering in and out. Three extra-tall people, two men and one woman, and one of the men had a triangle for a head. Two little mechanical men that hung out on either side of her walker. Two african women, one of which was sleeping in the bed in the studio. And she heard disembodied arguments, too! The worst of it is over now, but I had really hoped that once the medication had cleared her system that it would disappear completely. But no, she still has the occasional hallucination that there's a third cat in the house, or an occasional not-real person around.

The most problematic delusion lately was that the doll club ladies entrusted the club dues check to her (NOT!) and that it was A) on her desk somewhere, entailing a shuffling and un-sorting of the piles of crap thereon, B) it must have fallen behind her bookcase, so I should empty and move the heavy thing to find said check, or C) it's in her purse somewhere, so she must empty the contents of her purse all over the bed and floor right before bedtime and then forget what she was looking for. That one took three days to clear up, until the ladies were over for a sewing day and I was able to get them to tell mom that it didn't happen.

Her ability to know what's important is completely skewed. She will bellow like a wounded rhinoceros when she wants some dessert, but neglects to mention that she spilled a half a can of soda on the floor. Instead, she wandered around the house for 20 minutes to get a cookie before returning to her room and mumble mentioning that there's a puddle on the floor. (They beat it into our heads at caregiver training that spills are a huge fall hazard that need to be cleaned up immediately, and I've explained that to mom dozens of times.)

I also have to remind her nearly every day of the utter basics of walker safety. She needs to pay attention to where she's walking, instead of staring off to the side at something. She needs to have her hands empty and on the handles when using her walker, not full of cookies or leaning on the brake levers. Those brake levers lock with just a light pressure, and she really doesn't need to mash them with her full body weight repeatedly every time she goes to lock them. Walk forward around the room rather than backing up, because once she gets started going backwards, she can't stop. And for Gawd's sake, PLEASE use those brakes when you're standing still reaching for something, leaving only one hand on the walker. Her favorite imperilment trick is to stop with her walker way too far away from her destination, then walk around and away from said walker. You'd think after five years of using a walker that this stuff would be automatic...

Oy. She would be safer in her power chair, but the walls and furniture would pay a heavy price. Plus, she needs to keep walking as long as possible. Either way, I'm a wreck every time she decides to move around. Bill mentions nearly once a month that she should be in a nursing home. I don't know how much longer I can handle this myself, especially with the new psychological problems. But I know that a facility couldn't give her the tailored assistance she needs for best quality of.

Truly, there are days when she does just fine with only minimal assistance. But those days are getting fewer and farther between all the time. I guess all I can do is continue on and wait for the next crisis to come along, and do whatever's best from there.

I return home from my Zumba class at the YMCA to find a wet paper towel and a sandwich spreader on the floor in front of the cookie jar counter. Puzzled, I clean them up and then I go in to check on mom. She's sitting in her recliner, reading. I ask mom what the stuff on the kitchen floor was about.
"Oh, I was using them to pick up the chocolate chips I dropped."
First off, they're chocolate chip cookies, and I can't see how a soggy paper towel would help, much less a small spreader. Maybe she intended to open up the drawer with the long cooking spatulas and got the wrong drawer, then grabbed what she thought she was looking for? Who knows.

Time passes....

I'm curled up reading on the sofa, when mom comes tottering out of her bedroom with her walker. I look up from my book with an inquiring "Yes?"

"I'm sorry I didn't come when you called," she says.

"I didn't call you," I reply, puzzled. "Why do you think I called you?"

"It's dinnertime."

"Nope. It's only 4:30, mom. Not dinner time yet."

*blank look* (At this point you can practically hear gears grinding and smell the smoke from straining neural systems trying to make sense of this.)

I try again. "I didn't call you for dinner, it's too early in the afternoon. If you want to walk around a bit, though, that's fine. Just let me know so I can spot you."

"Thank you," she says and shuffles back to her bedroom without another word or even looking at me.

In the house of my mind, thoughts are like neurotic guests that won't go home when the party is over.  They pace the floors, wearing holes in the carpet of my mental rooms.  With great effort, I separate one from the throng.  But no more than I push it out the front door, than its twin cousins sneak in the back.  
I've left many messages for Morpheus, but he won't return my calls.  Oh fickle one, to poke and pester me all day long, but refuse to come visit when invited. 
I try turning off all the lights and going to bed, but they won't relent.  Oh no.  Instead they start singing rounds, mumbling their separate tunes over the top of one another, endlessly repeating.  When it gets to be more than I can bear, I call in the big guns.  The soporific enforcer!  But no; even this aid comes to naught against these tenacious pests.  
Reading can temporarily silence them, as if they quiet to listen to the story.  But my eyes grow heavy, weary.  When the book is set aside, they resume their chatter.  They refuse to believe that what they have to say isn't important right now.  If you try to ignore them, they just repeat themselves, getting louder if less coherent the longer they go.  But dare to focus on one and listen to it alone and it drops it's voice to a whisper like a stage-frightened child.   Meanwhile,  the others shout all the louder to fill the gaps in the wall of sound.

Wow, that was an unpleasant end to my evening. I was just relaxing in a hot bath when I heard a crash from mom's room. Knowing that nothing good comes from a noise like that, I climbed from the tub, grabbed my robe, and went to check it out.



Mom is standing in the doorway to her bathroom, the walker in front of her, and a great litter of broken dessert bowl and remnants of dessert on the floor, as well as her lower dentures. She's shuffling around, trying to figure out how to pick up her lower plate. I just hustle her away from the mess, taking her hands and leading her to her chair (which, incidentally, is also liberally smeared over with dessert spillage). STAY! I order, because she's still worried about her teeth when there's broken glass all over the floor.

(Another aside: Don't ask me how she managed to shatter a pyrex bowl. Them suckers are nearly unbreakable, and usually if they do break, it's into two or three big chunks, not lots of little shards.)

As I carefully swept up all the visible bits with a dustpan and broom, I asked her why she was taking her dessert dish into the bathroom in the first place. "Oh, I must have forgotten I had it in my hand," was her response.

Um, using the walker is supposed to involve BOTH HANDS holding onto BOTH HANDLES. I've told her repeatedly that she should never ever have anything in her hands when she's using the walker. I remind her of this, then after doing a wipe-down of the floor with a damp cloth to make sure there were no slivers of glass left, I bring her the walker again so we can get her in to get cleaned up and ready for bed.

Uh oh, I spotted a smudge of blood on the floor where her foot had been resting before her dystonia pulled her lower legs up, lifting her feet off the floor. (Yes, she has amazingly strong quadriceps.) It seems she had managed to find one little chunk of glass that bounced out of the bathroom and stepped on it. The neuropathy in her feet is bad enough that she didn't even notice. I thoroughly cleaned the tiny cut and inspected it with a bright light and tweezers, luckily finding no embedded glass.

Walking back across the room, she suddenly stopped and started wavering. I asked her what she was doing, and she said she was preparing to make the sharp turn. Huh? She's in the middle of a straight line shot from chair to bathroom door; no turn at all, much less a sharp one. Unfortunately, that sort of nonsensical reasoning is becoming all too common from mom nowadays.

I finally get her in to get changed out of her food-smeared clothes and we joke that at least there's no spills of dessert in her underwear. :) I did find some in her hair, though!

When I cleaned up the mess on the floor, I had gently tossed her lower plate into the sink for her to rinse off when she put her dentures up for the night. Then she asked me where the upper plate was. It hadn't been on the bathroom floor, so I asked her where she was when she took it out. "Oh, it must be over by my chair." Apparently, she took her upper plate out before eating dessert, and it had fallen down beside the chair. Gee, ya know Mom, if you'd keep your teeth in your mouth where they belong, you wouldn't loose track of them. *sigh*

I tossed her clothes, the pillow from her chair, and the chair cover in the laundry, took the trash out to the can to dispose of the broken glass and the rags I used to wipe up with, and her mug (plastic, thankfully) out to the kitchen. As she was settling in to bed and I got ready to give her the last dose of pills for the day, it occurred to me that the spoon she had been eating dessert with was missing...

Oh well, that'll just have to be a mystery to solve another day.

Rather than flog you with more ways that mom is declining (and more rapidly every day), I thought I'd have some fun with this list of questions that a cyber-friend posted.
So there.

1: Do you sleep with your closet doors open or closed?
Closed. Always.
2: Do you take the shampoos and conditioner bottles from hotel?
Nope. I'm usually allergic to them or think they smell funny.
3: Do you sleep with your sheets tucked in or out?
In, although Bill constantly kicks the foot out on his side.
4: Have you ever stolen a street sign before?
Nope.
5: Do you like to use post-it notes?
Sometimes.
6: Do you cut out coupons but then never use them?
Sometimes. Mom's the one who always pulls out coupons for stuff we don't use.
7: Would you rather be attacked by a big bear or a swarm of a bees?
Depends if I have a gun handy or a pond nearby...
8: Do you have freckles?
I used to when I was young and lived in a sunny place. Now I just have 'reverse freckles': white spots that show up when I get a little color.
9: Do you always smile for pictures?
I hate having my picture taken, but I try to smile in case it might make me look less like a moose.
10: What is your biggest pet peeve?
People who spout off without doing their research, not so much lying as willful ignorance.
11: Do you ever count your steps when you walk?
Often, and I count other things too.
12: Have you ever peed in the woods?
Yup.
13: What about pooped in the woods?
Nope.
14: Do you ever dance even if theres no music playing?
Sure!
15: Do you chew your pens and pencils?
No, but I do tap them on my lips.
16: How many people have you slept with this week?
One, unless you count the cats. Then three.
17: What size is your bed?
King size, baby!
18: What is your Song of the week?
The chorus for "Stronger" by Kelly Clarkson is running through my head.
19: Is it okay for guys to wear pink?
Sure, why not?
20: Do you still watch cartoons?
Not as often as I'd like to, but yes.
21: Whats your least favorite movie?
It's a toss up between Total Recall and Team America.
22: Where would you bury hidden treasure if you had some?
Nope, not telling!!!
23: What do you drink with dinner?
Usually juice.
24: What do you dip a chicken nugget in?
Sweet & Sour sauce.
25: What is your favorite food?
This season, it's Loaded Baked Potato Soup.
26: What movies could you watch over and over and still love?
Ask me Again, The Hunt for Red October, Indiana Jones and the Last Crusade, almost anything Disney.
27: Last person you kissed/kissed you?
My hubby. <3
28: Were you ever a boy/girl scout?
I wanted to be a boy scout because they got to do all the cool stuff.
29: Would you ever strip or pose nude in a magazine?
Not anymore. Maybe when I was younger I might have.
30: When was the last time you wrote a letter to someone on paper?
I write a handwritten note to go with every mini quilt swap I send out.
31: Can you change the oil on a car?
Yes, but I let Bill do it since he's the car guy.
32: Ever gotten a speeding ticket?
Twice, but not for over 20 years.
33: Ever ran out of gas?
Yup, but only once. Been close a few times...
34: Favorite kind of sandwich?
It'd be a tie between PB&J and open face toasted cheese (Longhorn colby).
35: Best thing to eat for breakfast?
Something cinnamon-y and sweet.
36: What is your usual bedtime?
Between 11 and midnight.
37: Are you lazy?
Oh yeah.
38: When you were a kid, what did you dress up as for Halloween?
I remember a cat, a gypsy, and a pirate.
39: What is your Chinese astrological sign?
Not sure... I think it might be the rooster.
40: How many languages can you speak?
Just english, but I know a little ASL and spanish, and a smidgen of five or six more.
41: Do you have any magazine subscriptions?
Nope. That's what libraries are for. :)
42: Which are better legos or lincoln logs?
Legos, hands down.
43: Are you stubborn?
I can be.
44: Who is better...Leno or Letterman?
Leno, because he's a car guy.
45: Ever watch soap operas?
I watched one for one summer and that was enough for a lifetime.
46: Are you afraid of heights?
Only in a sensible way. Being at the very top of a tall wobbly ladder=bad. Sturdy high place with solid railings=just fine.
47: Do you sing in the car?
All the time!
48: Do you sing in the shower?
Nah, nothing much to sing along with.
49: Do you dance in the car?
As best I can if something that demands to be danced to comes on.
50: Ever used a gun?
Sure. I could use more practice, though.
51: Last time you got a portrait taken by a photographer?
That would be my passport photo in 1999.
52: Do you think musicals are cheesy?
Only some of them.
53: Is Christmas stressful?
Sometimes, but it's balanced out by the joy.
54: Ever eat a pierogi?
Nope.
55: Favorite type of fruit pie?
Green grape pie is awesome, but cherry and apple are better for everyday.
56: Occupations you wanted to be when you were a kid?
Gymnast, boy scout leader, race car driver, dog or cat breeder/trainer.
57: Do you believe in ghosts?
Definitely.
58: Ever have a Deja-vu feeling?
Yup, but not as often as I used to.
59: Take a vitamin daily?
Yes.
60: Wear slippers?
Slipper socks, does that count?
61: Wear a bath robe?
When I get out of the bath, yes.
62: What do you wear to bed?
Tank top style undershirt and panties.
63: First concert?
The seattle symphony in 5th or 6th grade.
64: Wal-Mart, Target or Kmart?
Wally world is closest, but I like Target a little better.
65: Nike or Adidas?
My Zumba shoes are Adidas.
66: Cheetos Or Fritos?
Tough call. I like both a little now and then.
67: Peanuts or Sunflower seeds?
Peanuts.
68: Ever hear of the group Tres Bien?
Nope.
69: Ever take dance lessons?
Yes; ballet as a squirt, then Charleston and East coast swing in my college years.
70: Is there a profession you picture your future spouse doing?
N/A, but I can't imagine Bill doing anything that doesn't have to do with cars.
71: Can you curl your tongue?
Yes.
72: Ever won a spelling bee?
No, but I came in second once.
73: Have you ever cried because you were so happy?
On my wedding day.
74: Own any record albums?
33-1/3 and 45's.
75: Own a record player?
Yes, and it's hooked up, too.
76: Regularly burn incense?
Never, but I do like some scented candles.
77: Ever been in love?
Every day. :)
78: Who would you like to see in concert?
Joe Bonamassa, Clarence Gatemouth Brown, Jack Johnson
79: What was the last concert you saw?
Dave Matthews Band at the Gorge
80: Hot tea or cold tea?
Neither. I prefer lemonade both hot and cold.
81: Tea or coffee?
Blech! to both.
82: Sugar or snickerdoodles?
Snickerdoodles most of the time.
83: Can you swim well?
Yes, but not for as long as I used to.
84: Can you hold your breath without holding your nose?
Yup.
85: Are you patient?
Not nearly as much as I ought to be.
86: DJ or band, at a wedding?
DJ; they can play a wider variety.
87: Ever won a contest?
Just once; I won tickets to a Sting concert.
88: Ever have plastic surgery?
Nope, but I wouldn't mind loosing the bags under my eyes.
89: Which are better black or green olives?
*shudder* Icky on either count.
90: Can you knit or crochet?
I can crochet a single strand, but that's about it.
91: Best room for a fireplace?
Living room/library.
92: Do you want to get married?
I am and it's good for the rest of my life.
93: If married, how long have you been married?
14 years this June.
94: Who was your HS crush?
Oh geez, I can't hardly remember it changed so often.
95: Do you cry and throw a fit until you get your own way?
I cry and throw a fit occasionally, but just to blow off steam. My way? What's that?
96: Do you have kids?
Only two fur kids and my mom.
97: Do you want kids?
Nope. Never really have, except for a vague sense that I should in my mid-30's.
98: Whats your favorite color?
Teal
99: Do you miss anyone right now?
My grandpa, Bill's brothers, and my distant nieces and nephews.

Mom had her annual review by her case manager last week. I just got the report, and even she can see in her half-hour visit that mom's declined. Mom has been upgraded from needing 105 hours a month of care to 135.

One thing that came up that surprised the heck out of me was during the usual depression questionnaire. The case worker asked if mom had had thoughts of suicide, and mom answered yes. Mom even said that she knew how she'd do it, but never really thought seriously about it. She said she got the idea from one of the books she read. Blew my hair back. let me tell you!

Just today, mom's having another low blood pressure episode. I had to haul out the power chair for her because she was having so much difficulty with simple things (putting glasses on, standing, putting dentures in) that I sure didn't want her to be trying to walk. This was supposed to be shower and hair wash day, but I don't think she's capable when her BP is 82/49. And that was after breakfast and two glasses of juice and a cup of coffee. I've got her reclining with her feet up and more juice and tea to drink.

I hope she recovers a bit before it's time to go to her C-PAP appointment this afternoon.

As many of you know, I've been taking care of my mom in various capacities for the last ten years or more. For the last four and a half, I've done little else. No doubt about it that my being here has enabled her to keep a decent quality of life longer than if she had been put in a nursing home as was recommended to us when she busted her second hip.

But there are days like today when I wonder. In the last few months, mom had markedly and rapidly declined. People who haven't seen her on a daily basis since, say, September, would be shocked.

Here's a quick summary of the changes:
Decreased ability in: decision making, problem solving, vision, speech, memory, stamina
Marked increase in: falls, neuropathy, incontinence, dystonia, postural instability

Mom has become more withdrawn; she doesn't want to go places, do things. I can't get her to go to the YMCA for exercise or even to play pinochle or other card games. She tells her friends that she wants to go on an outing with them, then when the day comes, doesn't want to go and has me tell her friends no.

Her balance and walking has become so scary I've considered encouraging her to use her power chair again. But then I think of how she crashes into furniture and walls with the walker and how unreliable her motor control is and think of the damage she could do to herself and the house with the power chair and decide not. Also, if she goes back to the chair, she might completely loose her ability to walk. Oy.

She's also become completely unreliable when it comes to taking her medication. She's got a beeper that goes off when she's supposed to take her pills. Which she can and does ignore. And then is quite certain if you ask that she has taken her pills, when she has not. Occasionally she will take her pills, but the wrong ones; for example, taking her 3:00 pm pills at 11:00 am. Or she will take them at the wrong time, like taking her bedtime pills an hour early because she thinks it's bedtime.

I blame each and every problem she's having on Parkinson's Disease. It's ruined her. She has bouts of low blood pressure that rob her brain of oxygen because the PD has goofed up her autonomic systems. The PD has damaged her balance center to the point that her body tells her that a 10 degree rearward lean is vertical. PD has caused the nerves in her feet to go numb so she can't feel when she's stepping on her own feet, which happens because of the constant tightening of the muscles on the inside of her right leg by PD that causes a cross-steping pigeon-toed gait. She falls asleep constantly during the day because even with a C-PAP machine to keep her breathing when she sleeps, she dreams so vividly that the thrashing around wears her out.

Parkinson's has robbed mom of all the things she loves to do best. She can't sew because of the tremors and neuropathy in her hands. She has difficulty reading because the PD affects her eye muscles. Even watching musicals on her TV is hard because she falls asleep, and has extreme difficulty working her TV and remote to get a movie to play even after repeated step-by-step instructions. (Power on TV, push 'DVD' on remote, put in disc, press play.)

The worst thing is that aside from the PD, mom is remarkably healthy. Without this rotten disease, she would need only a few medications to stay well: thyroid, blood pressure, calcium, and liver pills, with maybe some pain reliever for her arthritis. It's crazy.

I really miss being able to have a conversation with mom. What I'm taking care of is just a shadow of the strong woman that raised me. I'm glad I can be here for her, but I hate HATE HATE this stinking disease.

My 'Positivity Project', that is. Life decided that some irony and tragedy were called for and dumped a deceased brother-in-law on us. I spent most of the last two weeks in California helping out the new widow before and after the memorial, and if I've learned nothing else from the experience, it's that I really, REALLY need to work on developing some friendships.

My poor sis-in-law, although devastated by the loss of her husband, was a prime example of the benefits of having lots of good, strong friendships. Between family, friends, work, AA, and church, she had literally dozens of people pitching in and helping her to cope with the situation. Dinners were delivered each day by someone different for over three weeks. One friend organized the reception food and beverages, another group brought all the desserts. Neighbors spoke at the service, designed the program, and donated free lodging for family. Her brother put together the slide show. Her best friend and niece live next door and one door down respectively, so they were there to make phone calls, take her for walks, listen, hug, and just be there. The outpouring of love and support from the community blew me away.

It made me think and assess my life. If something drastic and sudden like that were to happen to me, I got nothing. No support group. Nada. Bill is my best friend, and practically my only friend. Sure, his family would step up, but they'd be just as wrecked as I would be. I've witnessed that first hand twice now. Taking care of mom has isolated me to a terrible degree. What few friends I had, I had because I saw them all the time at school or work. Now that I'm not there, we haven't spoken in so long I don't know what I'd even talk to them about. We have nothing in common anymore.

I may not be suffering from a sudden tragedy like her, but this slow-motion disaster of watching mom decline is somehow just as hard. Think of the band-aid analogy. I know I'll be sad when mom finally goes, but I'll also be relieved, which will make me feel guilty for feeling relieved. I know it. It's just going to be that way and there's nothing I can say or do to change that. The only thing I can do is to find me some elephants.

Elephants? Say what? No, I haven't completely lost it. It's from something my sis-in-law told me. In her AA group, they have chosen for their mascot the elephant, not because they 'never forget' but because of one particular social behavior. When one elephant is weak, sick, or in trouble, the other elephants will press close around her and hold her up, supporting her until she can make it on her own.

Right about now, I'd be happy with some aardvarks (or insert other silly-named animal here). Just some people that are my friends, not my mother's, not my husband's. People to be a vaguely normal 42 year old with, instead of my mother's caregiver. People to actually have a conversation with about things that interest us. To share my time and ideas with and who might help me remember how to be me.

And maybe, just maybe, some of them might like the idea of becoming elephants together.

I just had the joy of picking my mom up off the floor for the second time in two days. Thank gawd she's got bionic hips or she'd surely be breaking things right and left. To counteract this loveliness, I shall enjoy the thought of:

FIXING SOMETHING JUST BY HITTING IT

My first car was fondly referred to as "the primer mobile". When I bought it, it had a primer spot covering maybe 1/4 of the hood. After every visit home, my dad would touch up any new rusty areas. By the time I traded it in, I think there was more primer than paint showing.

It wasn't the greatest car, but it was transportation and it was mine. The radio was defunct. It leaked oil due to mushroomed head studs. (Coincidentally, the lack of radio meant I could hear when it was needful to add oil.) But my favorite bit of that poor car was the passenger-side headlight.

If the car had been off for a while, when you fired it up and turned on the lights, that one would not come on. But, and here's the cool part, if you gave the car a nice thump on the fender right next to the light, it would come on! And it would stay on until the next time the car sat for a while.

Once I even had a complete stranger thump it for me. :)

I could have replaced the headlamp, but it was just too nice to have just one thing in my life that I could fix just by hitting it.