Parkinson’s and Delusions

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Elephants in the Basement

Pink elephants, the ultimate of delusions

If you spend any amount of time with a person with Dementia you may start to doubt your own sanity.  Or at least question everything you think you know about reality.

My mother had quite a cast of characters in the ever-evolving  play happening in her head

The delusions started, in my opinion, shortly after having her horrible teeth pulled for dentures.  She had to be completely sedated so she wouldn’t move during the procedure. About a week later she started seeing teeth in her food. It would usually be the oatmeal or chicken soup that would set it off. She’d see the teeth in the food and refuse to eat it. And I would have to make her something else. We didn’t think much of it at the time as we figured it was just her remembering the dental surgery. But as time went on it got worse.

Children are common delusions, especially among women

I’ve noticed that the delusions that occur in many women with dementia have a theme. Children running up and down the stairs or getting into the bed with them is quite common. I would try to convince her she was just hearing squirrels on the roof. She would look at me with disdain and say, “so you’re saying I don’t know the difference between a child and a squirrel.”   She had me there. Just because I didn’t see them didn’t necessarily mean they weren’t there. So I told them to settle down and stop running around so much.

There was the family that lived in her bathroom.  She felt they should be paying rent. I agreed.

Is Woody a delusion, a squatch or maybe just a wood spirit

One other visitor made frequent visits.  His name was Woody or the Green Man. He would hang out in the shadows of the trees and keep an eye on things.  Woody was quite tall, green complected and covered with leaves. He never spoke, just watched the house. Not too creepy. She liked him though. Maybe there’s Squatches keeping an eye on the house.  We are in the mountains, it could happen. Then I found some lore about the Green Man, a nature spirit. I showed her the picture and she’s like, “Yup, that’s him.” Now I’m really freaked out. “Woody came by last night. He didn’t stay long.” she’d say. “That’s nice. Tell him I said hello.” “Okay, let’s play Words with Friends.” And we’d move on.

You realize this isn’t the only DIMENSION, right?

String Theory in Physics suggests that there are multiple universes all around us.  Who’s to say that these dimensions can’t be glimpsed by those who are open to it.  

Recently my father’s nurse told me how when her grandmother was nearing the end of a long bout of cancer and heavily drugged she’d request a day off just so she could be lucid for a while.  She was a nurse as well and understood what was happening. They would talk about various things, seen and unseen.

The Other 5th Dimension

One day her grandmother looks her dead in the eye and says, “You realize this isn’t the only dimension, right?  There’s the 4th and 5th one after we leave here.” Dad’s nurse looks at her and says “What? What do you mean?” “I just didn’t want you to worry about me,” she replied.  Then she suddenly looked around, startled, like she’d realized what she had just said. “Oh shoot, forget what I just said. You weren’t supposed to know that.” No amount of prodding would get her to clarify further.  Just makes you wonder, doesn’t it?

My favorite of all the delusions were the elephants in the neighbor's basement

I remember one day sitting on the porch.  Mom looks at me and says, “The elephants were out again last night.” Without missing a beat I reply, “Really, how many?”  “Only 2, the little one stayed in the basement.’’ “Whose basement?” “The neighbors, they keep them inside during the day so they stay out of trouble.” “Interesting”  “Yep, that’s why their garden is so nice, all the elephant poop.” “Well, that’s convenient. Wanna play Trivia Crack?” “Sounds good.” Apparently, the neighbors always waited until I had left to let the elephants out.  Very thoughtful.

Sometimes you’re not crazy

Sometimes it's not a delusion

One day she looks at me and says, “The baby was crying outside my window last night.” “Really?” “Yeah, for about 10 minutes. I yelled at Dad to bring it in, but he didn’t hear me.”  “Well, that’s troubling.” “It finally wandered away towards Wayne’s house. It stands outside my window every night.  It’s very annoying. Someone should feed it or something.”

Later that day I run into Wayne. He says that our other neighbor’s wife, who had stroke-related dementia (and burned her last house down, so they’re renting next door now) had gotten out of the house while her husband was at work. (He works the night shift.  She’s usually asleep by then and doesn’t normally notice.) She woke up and couldn’t find him and became frightened. Then she went outside to look for him and became disoriented. She had been to my parents’ house before so tried to wake them apparently.

Wayne found her wandering around the cul de sac, crying, and brought her back home. It would happen several times a week. She would go to my parents’ house first then Waynes if Dad didn’t wake up.  Her husband finally decided to get her a night caretaker after she fell down an 80-foot ravine. A few weeks later Mom told me the baby doesn’t cry outside her window anymore.

Initially, in spite of the doctor’s warning that I couldn’t change her reality, I still felt I had to try.  This woman is intelligent, has more degrees than shoes and knows the difference between what’s real and imaginary, dammit. I would get so frustrated with her. “Why can’t you see what I’m seeing? It’s right in front of you.” She’d be like, “why aren’t you seeing what I’m seeing?”  It was easier to agree with her sometimes which made me feel a little guilty. It felt like allowing her to maintain her fantasy world was keeping her from being able to join the actual one.  But who’s to say hers wasn’t better. Then one day I saw it too.

Sometimes you see it too

One day, we went down off the mountain at my old trailer we call the Annex. She named it. We thought it was weird, now we can’t think of it as anything else. She liked to come down to Townsend as it’s relatively flat and she liked to putter around the yard without the fear of rolling away.

Sometimes delusions can actually be based in reality

She looked at me and said, “Why is that man dancing with that boy?  It’s so inappropriate.” I looked in the direction she was pointing and saw a 3-foot tall man dancing with a 2-foot tall boy.  After a moment’s freak out, I blinked a few times and realized I was looking at a bird bath in the neighbor’s yard. It was supported by seahorses.  The shadows of the seahorses created the shapes of the dancers.

That’s when I finally understood. Many of her delusions were real objects. She just couldn’t get to the next step of seeing past the initial illusion.  It was like living inside one of those Magic Eye paintings. Once you see it, you can’t unsee it.

I understood her delusion when I saw the golden man under the tree

“There’s a golden man under that tree.”  Yes, there was. I could see him. Then it became sunlight on sycamore leaves.

“Why is there a Chinese Man sitting on Wayne’s fence?”  For the life of me, I couldn’t unsee the man. I just couldn’t figure out what I was actually seeing.   I finally had to go over to Wayne’s house to see that it was a pail of flowers next to a step ladder.

Just Because You’re Crazy Doesn’t Mean It Isn’t Real

We live in the Great Smoky Mountains, near Cades Cove, a favorite tourist destination.  We often have our lunch in this little, out of the way cemetery near the Visitor Center.  It’s quiet and peaceful and most of the tourists just drive by.

“We have to move the car.  There’s Indians in the trees”. I checked to make sure it wasn’t bears. They love Subway tuna sandwiches. “Don’t worry about the Indians. They’re just keeping an eye out.” “Probably watching those deer heading for the car, they want in.” , she replied. “Mmm-hmm, just eat your sandwich.” “No, seriously, the deer want in the car.” “There’s plenty of room in the back seat with me. Don’t worry about it.  The Indians are taking care of …”

Cades Cove deer, not a delusion

That’s when the doe stuck her head in my window and grabbed my sandwich. Apparently, Mom had been watching them sneak up on the car in the side view mirror. Just because you’re crazy doesn’t mean things aren’t out there.

To be completely honest, once I realized that I could see what she was seeing, it made the delusions easier to deal with.  Sometimes I would just run with it, sometimes I could redirect her to see what was really there. It helped with her anxiety.  

Just Roll with it

The doctors will tell you not to argue over what they see and hear.  You will not change their mind. Ever. Everything they see and feel is 100% real to them.  Just as everything you see and feel is real to you. And let’s be honest, which one of us really understands what reality truly is.  We all live in a Matrix of our own choosing. Just watch the news for 15 minutes then ask yourself how so many people can be so wrong and out of touch.  The problem is, they’re thinking the same thing about you. Each of us perceives the world through our own experiences and no two people are alike.

Sometimes it is easy to explain away what dementia patients are hearing and seeing. Sometimes you just have to run with it. Who’s to say at the end of our lives, when our brains are most open to all possibilities, we can’t sometimes get a glimpse beyond our own reality.

I gotta go. Woody is stopping by later.

Parkinson’s and Regret

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The Rooster in the Hen House

Don't be the chicken of regret.

I regret many things about my Mother’s journey with Parkinson’s Disease. Instead of living out her Golden Years traveling and enjoying life, she became homebound and afraid of strangers. I regret that she isn’t going to get to know her Great-Granddaughter, Emma, who’s a firecracker like she was. I regret that I wasn’t more patient and understanding with her. But the one thing I regret most of all is that she never had a chance to enter the rooster crowing contest at the Great Smoky Mountains Heritage Center’s Blue Ribbon Country Fair.  

Parkinson’s stole everything from Mom. It robbed her of her quick wit, her love of hiking and eventually it even took away her ability to care for herself.

Time to Get Big and Loud

Parkinson’s slowly robbed Mom of her voice. (Not always a bad thing, mind you). The hospital nearby had just created a program called Big and Loud.  It’s a fun series of therapeutic exercises designed to help Parkinson’s patients regain their voices and mobility. It would have been an amazing program for her. Sadly, her mobility had degenerated to such a degree that at that point it was physically impossible to get back and forth to the hospital.  The program was new and they didn’t do house calls.

So we had to come up with our own version of Big and Loud. Whenever she would get sick and end up in the hospital they would send a physical therapist home with her for about eight weeks. It was awesome as she liked Sandy, her physical therapist. Sandy was a local girl and didn’t put up with her baloney.

It Feels So Good When You Stop

Sandy left us a packet of exercises to do and we’d work it into our daily routine. I figured even a little bit of exercise is good. Even if it was just standing up and sitting down and walking side to side at the sink. At least it was something.  In the morning Mom’s hands would be cold and stiff so I’d give her a daily massage, which sometimes turns into four times or five times a day depending on how cold and damp it was. Mostly I’d just rub her hands, arms, and shoulders just to get the kinks out.

It was funny when she was laying down and I’d massage her legs because they were so stiff. She’d holler like I was torturing her (maybe I was, a little) but then yell at me to keep going.  It was one of those feels good when I stop situations but it did help release the knots in her muscles. That took care of the Big part of the equation.

Crow like Peter Returning to Neverland

We did come up with a solution for the Loud part, though. Every year the Heritage Center has a Blue Ribbon Fair with all of the sheep shearing, cast iron pan throwing and hog chasing you’d ever expect at a little Southern Country Fair.

One of the things Mom always wanted to do was participate in the rooster crowing contest. She would practice crowing for weeks as soon as the banners went up saying the Fair was coming. I figured the neighbors either thought we had a coop of chickens or were just plain crazy. It didn’t matter because she loved it. For someone who whispered all day long being able to crow like Peter Pan was a treat. At one point my daughter whispered to me, “Did Grandma have a stroke?”, after listening to Mom crowing to herself in the corner.

Every year I’d say, “If you’re feeling up to it, I’ll get you over there and you can enter the contest.” As the time for the Fair drew near, we would rehearse every day. We’d pick out her rooster crowing outfit, and look over the schedule of events to see what else would be fun to see and do at the fair.

Pack Up the Car, We’re Heading to the Fair

The day of the contest would arrive, and we would pack up the car and hit the Fair around 11 in the morning, her optimal moving around time. One thing you should know, we live about 2 miles from the Heritage Center. But no trip is complete without drinks, snacks, meds, a change of clothes and the wheelchair in the back. We would arrive with plenty of time to check out the crafts, the apple butter making and even watch the blacksmith for a while.

Sadly though, every year the contest was always later in the afternoon. Mom would be fine in the morning but by 2 o’clock she would be exhausted and her meds would have worn off. She would always be so tired and cranky we just couldn’t stay. I would tell her we could go home, take a nap and come back later, rested and ready to go. We always tried, but she just couldn’t make it back.

I will always regret that her body would always fail her when she needed it the most and she never got to show the world she could crow.

Parkinson’s and Guilt

I Am The Polar Bear

Don't let guilt keep you confined.

When my daughter was young there was a polar bear at the Roger Williams Zoo in Providence, Rhode Island.  They had just created this big beautiful polar bear habitat. All the bears were splashing, romping, doing polar bear things. All except for one. That bear would walk four paces, nod its head, turn, walk four paces, nod its head, turn, over and over and over again. Never deviating from its pattern. never joining the other polar bears.  

I later found out that the bear had been rescued from a small cage in Alaska where it spent the first 20 years of its life. It had spent so long pacing in a tiny cage that even when it was given the opportunity of more freedom he couldn’t stop.

I am the Polar Bear (Written April 2017)

I am the polar bear from Roger Williams Zoo. Here’s why.  Like the polar bear, I was frustrated at doing the same thing day in and day out for Mom. Showing up every day, knowing that she was getting a little bit worse and there wasn’t a single thing I could do to change it. I felt guilty all the time. I felt that if I wanted time away for myself, I’m letting Dad down. How could I go out and have fun when Mom’s trapped at home? And how could I leave Dad alone to take care of her? So, I would pass on whatever event was happening. It was my choice to decline, but I would be angry and frustrated about it. I just kept pacing in a cage that didn’t even exist.

Now that she is gone, I’m out and about and missing the small cage that had become our lives. There were so many times when she drove me so crazy I could have happily snapped her neck and tap-danced to the electric chair.  I’d give anything to hear her whine at me one more time.

It’s Scary Out There Without My Cage

Slowly I’m getting out and about, leaving my cage behind.  My daughter helps with that a lot. She makes me go out and we’ve been painting, shopping and trying out all the new hard ciders in Knoxville.  There are a lot. It may take a while to sample them all.

My first instinct, when asked to participate in various events, is to say no, I’d love to but I can’t. (That would be the polar bear talking.) Then suddenly it occurs to me that I can, there’s no reason not to.  I will look at Tiffani and say, “I am not the polar bear, let’s go do it!”

Next week for the first time in what might be years I actually have things on my calendar. Haircut on Tuesday, grant writing class on Wednesday and a Board Meeting with Historic Ramsey House on Thursday. When asked to help out Ramsey House with their grant writing, my first thought was, “I can’t.” My second thought was, “why can’t I?”. So I did. I am not the polar bear anymore. (OK, mostly I’m the polar bear but I’m working on it.)

That was Then, This is Now (Written April 2019)

I wrote the section above shortly after my Mother’s death in 2017. The first year was very hard. All of the routines my father and I were used to were gone and we spent months trying to find a new normal.

He started to go to church again and I even got a part-time job (at the Historic Ramsey House of all places.) I still went to Dad’s house every day, but without the stress of dealing with Mom’s dementia, it was a more relaxing, companionable situation. If I had to run into town, I would. He would come along and we would make a morning of it, complete with a trip to Sonic.

Then last Summer, on his 80th birthday, Dad found out he has rectal cancer. He wasn’t eligible for surgery due to his age and past surgeries. That and the fact he would have to be put on a catheter and a colostomy bag afterward made that choice impossible. Radiation was also out due to his prostate cancer and radiation treatment 20 years ago. Apparently, there is no double dipping in radiation.

So Chemo it was. The doctors said it’s not a cure but more palliative. If it just gives him relief from the abdominal pain, then it would be worth it.

The Polar Bear Returns

So, the Polar Bear is back. My Daughter and I had to cancel a birthday trip because Dad was in the hospital. Going out of town is very difficult. I had to go to Florida for my in-laws 50th anniversary last August. My sister stayed with him, which was nice. I didn’t have to worry about him for a whole week. Then on the way home, he ended up hemorrhaging and ended up back in the hospital. I don’t think my sister is ever coming back. (It ended up that the bleeding was a good thing, evidence that the tumor was shrinking. Who knew?)

It’s nice to see that some things just don’t change. The guilt is strong with this one. (Thank you, James Earl Jones) When I’m at work and he’s home alone, I worry that he’s alone. What if he falls again? I keep finding out after the fact that he’s fallen in the bathroom or kitchen. Easter Sunday he almost face-planted at church because he stepped on a pebble. Luckily I was there and grabbed him. I swear I want to wrap him up in bubble wrap. (Both for the protective layer and the amusing noises if he falls.) When I’m hanging out with him, I’m anxious about not getting stuff done at work. Wherever I am, I have something I can feel guilty about.

Isn’t it funny how quickly we go right back into caretaker mode? It’s almost like I never left.

Just Keep Pacing Your Cage

So I pace my cage again. I can put off my needs for a little while longer. Truthfully, there’s nothing I’d rather do. Without the added drama dimension of dementia, it’s so much easier this time around. And maybe I learned a thing or two taking care of Mom.

Dad just finished his 12th round of Chemo. Dad was found NED (No Evidence of Disease) after 6 treatments. They gave him 6 more treatments just to be sure. We’ll find out if it’s still gone tomorrow after his PET scan. If it is, then we no longer have multiple trips to town every week, just a scan every 3 months. The Polar Bear is watching.

Update

Well, the good news is, the tumor is still shrunk. The bad news is, chemo needs to continue to keep it that way. Indefinitely. Instead of the hoped for one and done, we’re looking at a permanent situation.

Good thing I’m the polar bear.

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Parkinson’s and Dementia

Every Journey Begins with a Single Hop

Mom Before Parkinson's and Dementia

This is my Mother.

Mom after Parkinson's and Dementia

This is also my Mother after year’s of dealing with Parkinson’s.

The mother I used to know once dragged me through the Smoky Mountains, refusing to turn back even though she knew we were lost. The mother I grew to know dragged me through the smoky remnants of her Parkinson’s ravaged mind, refusing to give up even though I knew we would lose.

Parkinson’s is Especially Cruel to the Sporty Types

My mother was athletic before being athletic was cool.  Back in the day, in the 1950s, girls were called tomboys if they preferred sports to dolls. At her top height of 4 foot 11 (she always said she was 5 feet tall, Grandma said that was a load of crap) she always felt she had to play twice as hard to be thought of as half as good.

When she was 18 she met a boy who loved to ski. She didn’t have the nerve to tell him she didn’t know how. So, one warm sunny day in May, she ended up following along on a ski trip to Mt. Washington, New Hampshire. She was all decked out with her brand new skis, black and white striped capris (think Mary Tyler Moore pants) and matching jacket. After hiking and sweating for 2-miles up the side of the mountain, her friends took off down Tuckerman’s Ravine leaving her to follow.

And Then it Got Interesting

She did great the first few hundred feet or so, then it was face-plant and roll for the next thousand. She remembered distinctly the sound of the skis smacking her on every roll. When she finally stopped she laid there in the snow for a few minutes wondering if she was dead. She turned her head and noticed a plaque on the rock next to her commemorating the life of a young man who died on that spot. Mom finally got up, realized she’d sprained her ankle, lost a ski and the most tragic of all, ripped her brand new capris. (She showed me the capris when I was in High School, still ripped). Mom had to hike herself out the last half mile to the lodge, limping and cursing the whole way. She dumped the boyfriend, gave up skiing and stuck with hiking after that.

She was a feisty girl from South Boston that never met a challenge she couldn’t win.

At least that was until she found out she had Parkinson’s Disease. Both her Father and Aunt had died from the complications of Parkinson’s so she knew from the beginning what was ahead of her.

Parkinson’s Dementia Sneaks Up on You Like a Frog in Hot Water

Having a family member with a progressive neurological disease is like the story of throwing a frog in hot water. Of course, he’d jump right out.  But let the water warm gradually and he’ll never notice until it’s too late.

If I’d encountered my Mother the way she was at the end, I would’ve run screaming out the door and not stopped until I hit the Bahamas. Oh wait, I did do that. But I came back, didn’t I? Sometimes the only way to escape was to actually leave the state, if not the country.

That is the insidiousness of Parkinson’s Disease and the Dementia that follows.  It’s a slow progression. You’re so focused on just surviving day after day you don’t realize how far down the rabbit hole you’ve gone.

It’s the Hope that Kills You

And then we’d have a good day and I’d think maybe I was wrong, this isn’t so bad. Yeah, right.  But it was those good days that kept me going. In spite of everything, I knew she was still in there and every once in a while she’d come back out.  I could put up with anything just for the glimpse of who she used to be.

I knew it was bad when I called my sister once and instead of “hello”, I got a “what’s wrong with her now?”.  She said she started to hate seeing my name on the Caller ID. When I asked why she said I only called if Mom was driving me crazy.  I became more aware of that and tried to call more casually. (That way I could sneak in the bad calls and catch her unawares!) 

Having been there from the beginning, each stage of the disease would freak us out but then we’d adapt and it became the new normal.  

Even the craziest life can feel normal after a while. So, be like the frog slowly simmering in the pot of water. Make it into a hot tub instead and enjoy the time you have.

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Parkinson’s and Denial

It’s Not Just a River in Egypt

In 2015, I left my job to help care for my mother who had Parkinson’s disease and severe dementia. Years of being in denial about her condition took a heavy toll on everyone who loved her.  She passed two years ago tomorrow and I can finally write about our time together without crying. (Probably.)

The Real Smoky Mountain Diva

So, for now, my blog will have two themes as eclectic as my life. Parkinson’s Disease and Crafting. I won’t be writing in chronological order. Basically, it’s whatever memory bubble pops to the surface.  I will try to list them on the page in order though. (Think Star Wars order, without the Jar Jar Binks)

This is the Real Smoky Mountain Diva at Dollywood Amusement Park in Pigeon Forge, Tennessee.  

Denial was not just a river in Egypt

Meet my mother, Betty.  She was diagnosed almost twenty years ago with Parkinson’s Disease, the same disease that afflicted both her Father and Aunt. At first, her Parkinson’s had been considered little more than a nuisance than a consideration. So we slow down a little, try different medications, to no avail, and just keep plugging along.

Fast forward a decade and a half. Is the house handicap accessible? No, other than the ramp leading into the house. Does she have a hospital bed or any kind of bed that would help her get up and down? Nope again. She just used lots of pillows that must be propped into position every few minutes. Can she enter her bathroom? Negatory, her walker wouldn’t fit through the door so she used the port-a-potty in the corner of her bedroom.

Is There a Zip Code for Your State of Denial?

She would freak out every time one of these options was mentioned. “I don’t want anyone tearing up the house”, she’d say.  “Hospital beds are too high and uncomfortable.”, she’d complain.  (Okay, she may have been right about this one as she was four foot nothing.)

My father did his best but he wasn’t young anymore either and none too strong. That’s why I left my job in order to help him out more.  So I figured once I was able to be there more often, I could enforce encourage a few changes. The trick was to make her think it was her idea. (It was a ploy that had worked well for decades as far as I was concerned.)

For example, she liked to sit on the edge of her bed and watch TV. Well, she’d rather lay and watch TV but she couldn’t always get back up and that freaked her out. So she would sit on the edge with pillows propped around her to keep her up. (It worked for a few minutes, but then she’d start to list to the left, or right, or on her back like a turtle). She mentioned once that she wished she had something to hold onto to keep her up other than her walker (which had wheels and tended to roll away on her). 

Quick, Before She Changes Her Mind

I jumped on the comment and suggested we Google some ideas. Safety Bed Rails? Nope, too confining. Security pole? Closer, but looks an awful lot like a stripper pole with a handle and it was way too intrusive she thought.

And then we saw the Bed Assist Rails that slide under the mattress. She could pull herself up when she’s lying down or hold herself up when she’s sitting. Bingo. Finally, an actual item that she could use to make her life more comfortable and convenient. (For us more than her, really.)

She loved it and used it often after it was installed.   Her only complaint was that I waited so long to get it for her. 

My mother and I created this abstract painting, Sunset Dreams. I wanted to prove to her that she could paint.  And she did.

You can have Parkinson's and still be Crafty


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