I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

30 March 2011

Have You Ever Had One Of Those Days?

Shakti and Sammy with the thumbs
This morning, I woke up at 5 AM, thanks to Samster, our tuxedo cat with thumbs.

"Brrrbbbrrrr, meeeeeeeeeeeeee, eeeuuuuu, brrrbbrrrr... eeeeeeeeeeeeeeeeeeeeeeeeeeeee!" Sammy anxiously spoke and paced around me as I lay motionless in my bed.

I was hoping to trick him; it didn't work.  I woke up and he was gleeful.  Jumping up on his hind legs for my hand, he sang his morning song,   "Brrrrbbbrrrr eeeeeeeeeeeeeeeeeeuuuuuuuuuuuuuuuuuuuuuuuuuuu meeeeeeeeeeeeeeeeeeee!"

I patted his little head as I said, "Oh, Sammy's a good boy, want to eat?"

Sammy understands eat; he raced me up the stairs.  He was one hungry cat.

I woke my mom at 5:30 AM.  She couldn't open her eyes.  She walked with them closed and refused to walk into the bathroom.  Planting her feet into the floor, she stiffened her body and fought my guidance.  I knew that she needed the toilet, she told me.

"Don't get sucked in Sue," I thought silently.  Stay calm.

"Today will be a GREAT day!"  I exclaim to myself, hoping to help improve the events of the day.  Typically, I say this before my feet hit the floor when I rise out of bed; today I forgot, Sammy was talking way too much.

Mom didn't have a very good start this morning.  She would have preferred to stay in bed than get up, get dressed and be out the door by 7 AM; off to the day program.  My mom is much more confused today making care giving more intense.  We got through the morning and she was in the van at 7AM with Martha.

"Yay!!!!!  The day is getting better already," I thought.

9 AM Shakti and Sammy had an appointment at the vet for their rabbis and leukemia shot.  Neither were very thrilled with the ride.  They had excellent health reports and as we left, the doctor said, "Have a good summer, unless of course these guys get into mischief outside."

Ah, thanks Doc for putting that thought out into the ethers!

Around 11:30, I was going out for a walk in the neighborhood, I went out and whistled for the cats to get them to come inside... they always come to my whistle.

I went inside to put on my walking shoes.  I came back out and whistled again when I heard dogs barking.  On the next street over, I saw 2 big dogs chasing a woman carrying a little dog.  Immediately, I whistled for the cats to come inside.  Shakti, she was already on the deck, watching something that was scary, she stood with her escape stance as she waited for the door to open.

Sammy, he was no where to be found.  

I heard more barking near the creek on the other side of the fence.  Like a shot in the silent night, I heard more barking, a cat screech, frantic cat claws on a tree,  followed by lots of barking.


Sammy, stuck way up in the tree
I ran out back.  I saw Sammy WAY up in the skinniest tree in the woods.  How the hell was I going to get him down?

Opening the back gate, the 2 dogs were at the bottom of the tree.  I yelled, "GO HOME.  GET OUT OF HERE!"  They began to growl at me - yikes!  I shut the gate fast and found a big stick.

I yelled... "GET OUT OF HERE!  GO HOME!"  As I slapped the stick against the fence post... the stick broke in half.  I had no weapon...more growling, this time one showed me his teeth.


I needed a bigger stick.  I shut the gate fast and looked around for another stick that wouldn't break.

Sammy, watching me try to save him.
Sammy watched from above, perched in the tree as I said, "Don't worry Sammy, I'm coming!"

Cautiously, I opened the gate again.  The dogs were gone and I was able to get closer to the tree where Sammy was perched about 20 feet or more in the air.  I had no idea how I was going to get him out of the tree.

The extension ladder was too short.

The tree was too thick to shake him out.
Dog Claw Print!

I had an idea... I'll show him how to climb down.  I began to scratch the tree trunk, making motions like I was climbing down.  "Use those thumbs you got!"  I said out loud to the cat.  He cocked his little head from side to side; he seemed to understand what I was trying to show him.

Sammy made a motion to climb down the tree head first.  "Yay!" I thought to myself, until a big gust of wind shook the tree top where he was perched.  Frozen motionless, he stopped trying.

I called my husband in a panic.  "Brian, Sammy is stuck way up in a skinny tree.  I don't know how to get him down."

"Let me check if I have meetings scheduled... no meetings, I'll be right home."  Brian said in a cheerful voice.  Thank God for Brian, I thought as I ran back out to stand next to the tree where Sammy was stuck.

Tilting his head, this way and that, Sammy was trying to figure out how to get down.  It was a puzzle.  He's good with puzzles.  I like to make puzzles with treats inside that he has to figure out how to solve; he always does.

"It's OK."  I said to him in my high pitched cat voice.  He knows this phrase and will come to us if he's scared and we say these 2 words.  He wasn't budging.

"Think!" I thought to myself.

My blogger friend Kathy wrote a comment on a post from a different time when Sammy was chased up a tree by a fox and Shakti was stuck up in a tree.  Kathy's daughter's kitten was stuck in a tree, she used a pillow case as a net.


On that thought, I ran in the house for a pillow case, returning with a sheet instead; Sammy is a 13 pound cat.  I picked a hammer and nails out of the garage cabinet; my idea was to nail the sheet to the surrounding trees and make a net to catch Sammy if he fell.

I thought I could shake the tree...

Guess again Sue.

Brian on the 20 ft extension ladder
"You're going to have to climb down, Buddy."

Ta Ta Da!  Brian to the rescue!!!
Brian arrived, got the big extension ladder.

Sammy climbed down
I couldn't photo it, I was standing there with the sheet
ready to catch him if he fell
Climbed it and Sammy climbed down like a little Koala Bear into Brian's arms.

Brian and Sammy

Once inside....

The phone rings, "Hello, Sue?  This isn't an emergency, it's Denise at All Care, your mom wanted me to call her mother.{my heart sank}  She's having a rough day....  We even tried to bribe her with a piece of cake, she wouldn't have anything to do with it.... Can she come home early if we can't calm her?  Will someone be home?"

"Yes, I'll be here.  She can come home."  I replied.

I don't know if she's coming home early or not.  It's now 3:15pm, she's due at 4pm... maybe she ate that piece of cake after all and decided to stay?

Have you ever had one of those days where everything seems to be moving backward?

Tomorrow, is a new day with new adventures involving cats and demented mothers... stay tuned.

29 March 2011

My Trip Through The 5 Stages Of Grief

My family in 1968
visiting our Grandmother
Gardner State Mental Institution
When I first learned that my mom's condition was Lewy Bodies Dementia, I was in shock...

Denial; stage one of coping with grief.  

I began this blog when I was in my first stage of grief.  My husband suggested it would help me to cope.  It also stopped some of my complaining to him; the best way to destroy any friendship.

I wrote and wrote and wrote. 

I researched and looked for answers.  I found some, but never found the magic bullet that would cure my mom.  I was in total denial of her impending demise; it was only a matter of time before she expired.  I wouldn't allow myself to think about her dying.

I wrote more.

Caring for my mom became more difficult and my expectations caused me more misery than they helped.  I expected so much from my family and friends but I came up short.  Unrealistic expectations got the best of me.  I became angry with everyone, lashing out in horribly hurtful ways; I am so sorry for this behavior.

I was angry; stage two of grief.

Care Giver's, please take my advice.  You may be angry now with your family, but it won't last if you meet everyone half way.  We don't have any right to judge anyone or expect something from someone because of an ideal we hold dear to our hearts.

Looking back at my own experiences when I was fighting with my siblings, writing terrible blog posts that I'm sure hurt their feelings; it didn't serve me.  I didn't feel better.  Yes, it felt good to get it off my chest and lash out like a 4 year old, but once I calmed down, I felt really bad; totally not worth the price.

We search for peace, we pray, we beg God for help.  We are angry.  I became super angry and even questioned the point of life and if there really was a God.  Who is this God?  Why is all this shit happening to me?  Oh, poor me... pity party time.  No one came to my party, not even God.

God isn't external to me... I believe God lives inside of each of us, it's what keeps us all united as one.  We are created in the likeness of God, so in my opinion... we're all a spark of God.

Ok... so, I began to bargain with myself; the 3rd stage of grief.

"Maybe if Ma takes this supplement, it will cure her?"

"Maybe if Ma has Acupuncture, she'll be cured?"

"I'll create a hypnosis script for her, that will help."

"I'll do Reiki on her every day, that will surely cure her."

I asked myself all sorts of questions about things that I discovered through the power of Google.  I was bargaining with the Universe.

I prayed to Mother Mary for a miracle.

My cousins are back!
A miracle did happen, but it wasn't the miracle I was looking for; it was better.  My anger subsided and my siblings and my cousin came back into my life.  My loneliness was being lifted; I needed to hear their voices.

My big sisters and our mom
My sister, brother and Mom
I felt better being able to call them on the phone and talk.  I especially am grateful for the mending of my relationship with my cousin Maryann.

My older sisters, they always were my protector when I was a little girl; without them, I felt lost and scared.

 My brother, he started to come around; he took in our Aunt who couldn't live alone any longer.  He is now a Care Giver; I know his pains.

Every one was always here to help in the way that they could, not the way I wanted them to; each of my family members mourned the loss of our mother; I was too wrapped up in myself to see their pain.

I felt really bad about how things were in my life.  I became depressed.

Depression: the 4th stage of grieving.  

I didn't have thoughts of suicide, but I did think about how much better it would be if I just dropped dead.  I was freaking out over the fact that I crossed the line that I vowed to never cross; wiping my mother's ass.  I cried and became more and more depressed.  Everything bothered me... EVERYTHING.  The more upset and bothered I was, my thoughts became more troublesome.  I cried a lot.  I couldn't cope with the pressure of care giving and living with my Mother-in-law.

I reached out to my Spiritual Teacher, Prema Baba Swamiji.  I told him my story and how I just couldn't get myself out of the hole that I had found myself in.  He offered advice.

I began to do deep breathing exercises in order to calm myself.  I re-remembered how to change my life and that I hold the power within myself to overcome all trouble.  I re-remembered that I CAN CREATE MAGIC in my life through the power of my mind.

I changed my mind.  I am creating magic.

My mom was still pooping and peeing everywhere.  Crying was making me feel worse; I chose to dry up the tears and suck it up.  Instead, I bought a box of disposable rubber gloves, lots of paper towels and when a mess occurs, I clean it.

Acceptance, the final stage of grieving.

Today, I accept what's happening and magically peace is finding it's way back into my life.  There's nothing that I can do to change history, I can only focus on what I'm going to do right now that will make a difference in my happiness tomorrow.  I know that I control my happiness.

I hold the power to forgive and forget.  

It's up to me and you to forgive and forget, move on, step up and apologize to someone that we're feuding with even if we believe we are right.  Being right doesn't make you feel good when you are alone and right.

People matter...people in our lives makes us happy.

We need each other, especially our family; call them, forgive and forget.  You will feel like the weight of the world has been lifted.  There are still years of opportunities to make new memories with your family, memories that could help you overcome your own dementia someday.

Forgive, forget and move on, there's lots of life left for us Care Givers once our loved ones pass. 

Today, I feel free and my mom's still alive.  

I've gone through my grieving over my mom according to Dr. Kubler-Ross' theory.  In my opinion, her theory is a good one, I have moved through all phases.  Some folks don't go through all stages of grief; I did so I thought I'd write about my trip through the 5 stages of grief... I feel free.

Elisabeth Kubler-Ross, MD was a Swiss born Psychiatrist, she lived from 1926 - 2004.  Dr. Kubler-Ross, when she was doing her psychiatric residency in 1958 realized that the terminally ill needed different care.  She wrote a book in 1969, "On Death and Dying."  The book became a best seller with medical professionals learning the Kubler-Ross Model which outlined 5 stages of grief.

26 March 2011

Sue's Good Ole' Boston Baked Beans

Sue's Good Ole' Boston Baked Beans
It's Saturday and when I was a kid, Saturday was baked beans and hot dogs for dinner.

I grew to love baked beans;  Dad told me that they were "cowboy beans."

I loved cowboys thanks to Rex Trailer, a real cowboy who was a local TV personality in the 60's.  It was a kids show on both Saturday and Sunday morning.  Rex and Pablo were cool and I wanted to be like them so I ate beans.

Here's a recipe that I made up yesterday.  The beans came out really great cooked in a dutch casserole in the oven.

4 cups of organic dry beans (any beans will do, navy beans are traditional)
1 large onion diced
4 Tablespoons of organic molasses
1 teaspoon dry mustard
3/4 cup organic ketchup (Muir makes a good ketchup - get a ketchup that has only tomatoes as the ingredients)
2 Tablespoons organic Worcestershire Sauce
1/4 cup Organic dark Agave Nectar
1 teaspoon Turmeric
Sea salt and pepper to taste


Soak the beans in a lot of cold water (6 - 8 cups) for a few hours in a big sauce pan.  Start this early, this is a slow cooking recipe that is well worth the time.

After about 3 or 4 hours, turn the heat on under the beans and let them cook until they are soft.  This is an important step, nothing worse than a hard bean that looks like it should be soft.

The water will absorb into the beans.  Transfer the beans with any remaining liquid into a large Dutch Oven pot.  Mix in all the ingredients listed.  Put the lid on the Dutch Oven and let it cook in a 325 degree oven for 3-4 hours.  Stir occasionally; adding more water as needed so that the beans don't become dry and hard.

25 March 2011

Why Unions Are Important

I really need to understand why the folks who would benefit the most from Unions are the same people that are fighting to have Unions dismantled in the public sector.

Do people realize that it's because of Unions that we have 40 hour work weeks, benefits like health insurance and sick days?

Unions in the public sector set the stage for all workers, even those folks who work for a corporation.  Unions are the backbone of the Middle Class, they help give workers bargaining power; unions level the playing field.

Union busting has been on the forefront of Republican politicians for decades.  Why?  Because Unions are not good for a businesses bottom line; profit is king, it's all that matters.

People don't matter to corporations.  Even though a business entity in the US have the same rights as people, they don't have emotions like people.  Corporations have a fiduciary responsibility to their stock holders, not the people who show up to work every day and make it happen.  Business doesn't care, it's not in the design of the laws for business to give a crap about you or me.

We are left feeling like poo if we work 9 AM to 5 PM.  An unspoken requirement to put in 50 or 60 hours a week for no extra cash has been slowly seeping through the private sector.  Folks are required to put in more than 40 hours a week or we run the risk of being laid off.  More and more folks are kept from their families, slaving at a job that they hate just so their families can have a roof over their heads and food on the table.  No longer do people eat dinner together, kids are being short changed... all for the damn mighty dollar that will end up in the pockets of the extremely wealthy.

All the wealth in this country is at the top and regular hard working folks are actually fighting for the wealthy to become more wealthy while making sacrifices; choosing between heat or food.

I just don't get  it.  Where's the logic?  Is everyone insane?

Unions give the middle class a voice, it allows us to bargain for benefits like 40 hour work weeks so that we can spend time with our families, quality time like my parents were allowed when I was a little kid.  Time with ones folks is way more important to a kid than money or things.  I have memories of my dad because he was in a union that bargained for a shorter work week.

Time gives parents opportunities to get to know their kids, guide them and teach them right from wrong.  Isn't this why people have kids in the first place?  Time allows parents to do homework with their kids and show them through example that education is the key to personal freedom.

Today, I feel like my country has gone crazy; everyone seems to be demented, fighting against things that would benefit them personally.

Why not tax the rich and use the money to help build services that will help folks to get out of the hole that they have found themselves trapped inside?

Union busting sucks.  If politicians get their way, we'll all be back to how things were during the Industrial age, when folks worked for peanuts, long hours and poor working conditions.  Slowly, we are all being manipulated by the Corporate Overlords through mass hypnosis implemented by the news media that is owned by the Corporate Overlords.

TV tells us what to believe and people believe it.  Even when the stories change from one station to the next, people still believe the stupid stories.  Morning news shows, it's not news... it's all advertisements, trying to sell us something, working to take our money for some crap that will end up in the trash sooner than later.  Stuff doesn't last... memories last, memories matter.

Yes, I'm ranting.  I'm angry.

I'm mad because our Care Givers don't have unions to back them and fight for their rights.  Do you know that there's a game that agencies play with Care Givers that are caring for our loved ones?  The game is they don't give the care givers 40 hours... know why?  If they don't get 40 hours they are considered part time help and are not required by law to provide benefits.  What the hell?!  Care Givers are paid about $8 bucks an hour and the agencies charge $25 an hour!  How is this fair?  Don't tell me that there's a big cost tied to each worker, there isn't, you don't even give them benefits.

The Care Giver has no paid sick time; they all go to work when they are ill.  I know, I've gotten sick because a Care Giver came to my house when they should have stayed away.

Care Givers are important and deserve to be treated with way more respect.  Care Givers need a union to give them a unified voice.

Unions created the middle class and the American Dream... why on God's good green Earth are regular workers in the middle class believing the drivel on the boob tube?

People... please, WAKE UP and think for yourselves!!!

So... can someone who thinks Unions are bad, can you please explain to me how and why you believe this to be true?

24 March 2011

Shot of Whiskey with Ed

My mom hallucinates a lot; mostly about my dead brother, Ed.  I love Ed.  He was a good big brother, even if he did put salt in my eyes when I was a little girl and spilled milk over my head because I wouldn't get out of our dad's recliner; he "hozied" the seat as he ran to the fridge for milk during a commercial break.  I hopped into his seat, full well deserving the glass of milk over the head.  I didn't deserve the salt in my eyes.  He told me to look up, so I did and he sprinkled salt in my eyes... bastard.  But... I still grew up and loved my brother despite his sick humor.

Today, I was able to go along with mom's hallucinations.  The Lithium Orotate is working.  I don't feel high.  I feel calm and all of the pain in my body is gone.  I love this Lithium Orotate.  It's making care giving much more bearable when caring for my mom with Lewy Bodies Dementia.

"Where's Eddie?"  My mom asked.  "He was here a minute ago."

"Oh, he is very busy with all the dead folks in Japan; you know the earthquake and the nuclear meltdown...   He's got to work over time gathering all the souls and bringing them to Heaven.  Dad will be here any minute with Heaven's Bus."  I told her confidently as I prepared to have her take her night time blood pressure medicine.

"Come on, have your medicine.  Drink it down like a shot of whiskey.  (I laugh like I just heard Ed talk to me)  Ha, ha, ha... Ed just told me that he LOVES it when you drink your medicine like a shot of whiskey, he's got a shot too and said, one, two, three... GO!"  I was hoping that my talk about Ed and drinking whiskey together would entice her.  It worked.  Good thing, my mom never drank with Ed but she knew that he drank and smoked.

"Ma... Ed is laughing so hard, he's coughing.  Remember when he used to laugh so hard that he'd choke and cough?"  I said to her, in my attempt to live in her demented world somewhere between life and death.

"Hmmmm.  Who's that on the front porch.  Someone's there."  My mom replied.

"That's got to be one of the folks looking for Dad's bus."  I replied back.

"Where's Eddie?"  My mom asked again.

"He's on the front porch with that soul, he's showing him the back yard where Dad comes with the bus...  Ed told me that he'll see you tomorrow.  He really loved how you did the "shot of whiskey" tonight.  It makes him laugh.  He loves it when you drink the blood pressure medicine fast like a shot of whiskey."  I spoke like I was repeating a real conversation that I had with my dead brother.  My mom believes that I can see him because I am a Swami.  I go with it.

I tucked my mom in and she said to me,

"6, 9, 5... I want to go with him."  She had a beautiful smile on her face.  She mumbled more words that were incomprehensible.  I assured her that she was safe and sound.  I used some hypnosis on her, she was in the right place.  I told her how wonderful Susan is and how much she loves her.  It seemed to work.

Then she said, "I want to go with Ed... Naw... not really, but... well, yes.  I think I do."

Mom's eyes were closed.  She was seeing something in her minds eye.  People were coming, there were people everywhere.  She was trying to tell me about them, but was struggling to find the words to describe what she was seeing.

I pushed the hair behind her ear like she used to do to me and her mom did to her.  "Everything is OK.  You are safe and sound."  I reassured her.  "You can go with Ed when you want, it will be a happy time for you.  You will look like you did when you were 18 and had that little tiny waist."

"Sleep with God, Ma.  I love you."  I said to her as I left her room.

23 March 2011

Overcoming Grief

The Re-Enactment of the day that Ed died
white water rafting
June 30, 2001
Grief... we all experience it at one time in our lives.  We are born, we live and we die.  It's the way life works, it's cyclical and there's nothing that we can do to stop the inevitable; death.

It does hurt when someone that we love expires, emotional pain tends to linger.  Grief can take over our lives, bringing more sadness and physical pain.  We can become trapped in a prison within our minds, forgetting that we are still alive.  It's up to us to let the person go, we have the power within our minds.

Life.  It's for the living.  

It's healthy to grieve, but how long is long enough?  Why do we grieve?  Does our ego play a role?  The person we miss is no longer, nothing matters to that person, it only matters to us.  Our ego causes us to focus on our self, after all, we are the only ones that we know truly exists; it's always been about us.  What about me?  We always seem to relate to things in life based on how it will effect us.

As a Care Giver for my mom with a terminal illness, I know that she's going to die.  I'm preparing myself for the day that my mom leaves this Earth.   Happy memories with my mom throughout my life are helping me to let my mom go.

I think about death differently than most, thanks to my father and his infinite wisdom.  My dad taught me at a young age that when we die, it's not the end of our essence.  Life is energy and energy, it can never be destroyed.  Energy is transformed when life ends, it morphs into a new form.

Where did they go?  Where will we go?

Memories and thoughts are real.  We can relive experiences both good and not so good; memories can transport us back in time.  Thoughts propel us into the future, creating more memories.  Memories that last and can bring us back to happier moments in our short lives.

To me, the living people in our lives, matter more than the dead; we still have time to enjoy each others company.  Once we are dead... we're dead.

Our minds can help us to overcome grief, it's how we chose to think about the loss of a loved one that really matters to our personal happiness.

My loved ones who have passed, I believe that they are around me.  Memories keep them alive and well in my heart.  I have learned that the one thing that truly matters is spending time with folks when they are alive, because once someone dies, it's over; no more memories can be created for future recall.

Memories bring peace to the survivors.

I'm a Care Giver.  I have memories that will keep my mom alive long after she's gone.  No regrets.  No reason to cry because the essence that is my mom can not be destroyed.  Just like my grandmother, my dad and my brother... they still exist in my heart, memories keep them alive.

What memories are you making today with the people in your life that you care about?

22 March 2011

Lithium Orotate: My First Encounter

Gold panning with Joe and Drew
May 2002
I should have studied to become a Geologist; I love rocks, they fascinate me.  Nuns in Grammar school helped uncover my passion for gems back in the late 60's.  Field trips to local beaches and woodlands piqued my curiosity, precious gems and minerals at my feet.   Identifying stones gave me the sense that I was a scientist; conglomerates were my favorite with granite, sandstone, quartz and mica.

Decades before the internet, I searched and looked for gemstone books in book stores.  Score! I found a book at the Boston Museum of Science gift shop one year, valuable descriptions and sketchy maps that I treasured.  Unfortunately, I lent it out to a friend and she never returned it.  Bummer.

The book was awesome, it provided written descriptions where gems could be found.  I liked to use the book as a starting point for expeditions.  Rock hounding outside in nature looking for gems and minerals is still my favorite hobby.

One day a group of my work friends and I picked a place out of the gem hunters guide; Goshen, Massachusetts.  We set out on a mission to find Goshenite, a gemstone that was originally discovered in this little town, population 99.  Goshenite is beautiful, it's a form of beryl that is clear and white.

Driving out to the western part of the state of Massachusetts, we found the little town of Goshen.  We made our best attempt to follow the brief description that was written in the book, searching for a path that lead into the woods.  We failed.  We continued driving aimlessly, stopping and looking for landmarks that were long gone since the time the book had been written.

Darn!  What were we going to do now?

A fire station seemed to appear out of nowhere.  An old fireman, leaning back on the legs of his small kitchen type chair while smoking a pipe, sat outside the firehouse.  The scene was surreal, similar to the opening to a Twilight Zone episode from the 1960's TV series.

Fearless, we approached the fireman, who listened to us as we explained our reason for being in Goshen.  We were looking for gemstones.  He put his pipe down, let out a happy little giggle and began giving us instructions.

"You see that white house up there on that hill?  You take that road where it forks, there are big white rocks sticking out of the ground... now that's the road you want to take."  He continued, "... you knock on the door on the side and tell (whatever the guys name was, can't remember) that I sent you up to his house and he'll show you where to look for rocks."  The fireman put his pipe back in his mouth without skipping a beat, puffed on his pipe with a peaceful smile on his face and waved goodbye.

We thanked the man and off we drove with picks and shovels in the back of my truck, heading for the little old white farm house at the top of the hill.

The sky began to darken as we drove toward the farm, threatening to burst with heavy rain.  Slowly we drove up the dirt path to the farm, it began to drizzle.  I was beginning to become frightened.  My active imagination was beginning to feel like we were entering a scene of a horror movie or a Twilight Zone episode.  I wanted to turn back but my friends encouraged me to keep going.

"Strength in numbers!"  My friend Cathy exclaimed.  I drove on.

Walking up to the door, we noticed that the farm was in need of repair.  It began to drizzle.  I knocked on the door as instructed and we were greeted by the cutest little old man.  My fears melted away immediately.  He had a bright face with a smile that light up a very overcast day.  He was super friendly, opening his home to my friends and me; strangers.  It felt like we had gone back in time 100 years.

"Come in!  Come in!"  He exclaimed.

After we told him what we were there for, he led us out back, through a cow pasture that was full of holes made by over zealous woodchucks.  Holes that could have broken our ankles if we were not careful where we placed our feet.

The clouds in the sky were threatening, becoming darker, larger drops of rain began to pelt our faces. Our guide wasn't phased by the rain, he led us further into the woods.  Cathy, my dear friend whispered to me, "This is where he pulls out the knife and murders us."  Ah.... no wonder I don't hang with Cathy anymore.

Finally, we arrived at the edge of the cow pasture, along a stream is where we stopped.

"He he he he."  The little old man began, "lots of Geologist have been coming here to research this land.  Right where we are standing, the Geologist worked tirelessly for quite some time.  This is a good place for you to start."

He walked around, looking at the ground; stopping to pick up a stone that he held up for us to see.

"You see this rock here?  It's the mineral Lithium, like they give folks with mental troubles.  You can suck on the rock."  He said to us as he held a dirty rock between his dirt stained fingers.

Immediately, we all began looking for a piece of lithium; we figured what the hell, we washed the stone in the stream and popped it into our mouths like a piece of hard candy.  We had hopes that we'd become as happy as the only two people we had met in town.

The rain began coming down harder.  "I'll leave you girls to your digging.  Come knock on my door when you are leaving, I will show you my collection and make you a cup of cocoa.  I'll heat the stove so that you can all get warm before your long drive home."   He laughed a soft happy laugh as he walked back through the cow pasture to his humble farm house.

Each of us took a spot and we began our search for Goshenite, a beautiful prize for our efforts.  Rocks with lithium in them were everywhere, we found ourselves laughing like the little old man.  Was it psychosomatic?  Was it real?  We didn't know but we stayed in the pouring rain, we laughed and dug for minerals.  It was loads of fun, we all did feel peaceful that day, even in a torrential rain storm.

Darkness was beginning to set in, my friends and I headed back to the farm house where we were greeted with a hot cup of cocoa and a dry place to sit next to the heated wood oven.  Our friend made good on his promise and pulled out a box full of precious gems that he had found on his property over the decades of his life.  I have never seen such an awesome rock collection, EVER.

Years have passed since my first experience with Lithium Orotate in its natural form.  My mom now takes 20 mg of a Lithium Orotate supplement to help improve her mood and disposition.  Dementia confusion and associated anger have seemed to dissipate.  It's working.

Yesterday, I asked our ND if I could take some Lithium Orotate to help me with the stress of Care Giving.  He said yes, so I took 20 mg last night before bed.  I had aches and pains everywhere.  I woke up without any pain in my body.  It seems to be working for me too.

**NOTE: ** I wouldn't recommend taking Lithium Orotate without talking to a Naturopath Doctor.  It does matter if you are taking Ace Inhibitors or Beta Blockers.  Even though this is a non-toxic version of Lithium, it needs to be taken with care and under the supervision of a professional.   It is safer than the pharmaceutical version but it can also cause your body harm if not taken correctly.

21 March 2011

Fabulous Weekend!

Mom smiling and dancing while wearing her "bling" that she got from "school"
Mom had a super weekend.  She smiled.  She danced. She sang.

Stomp.  Stomp.  Stomp.

The sound of dancing to her favorite Frank Sinatra tunes filled my heart with hope.  No arguments.  No poop issues.  Life was peaceful for all of us.

Lithium Orotate seems to be helping my mom's mood a lot.  I love it when she dances.  I love it when she says, "YES!"  

Yesterday, late afternoon, I took my mom to Whole Foods with me.  She wasn't sleepy like usual, she was even finding her words.   She walked the aisles of Whole Foods, pushing the cart and picking out fruit that she wanted to have when we got home.  She danced and sang to the music that was piped through the market.  Mom was agreeable, she was remembering... Wow!  We had a great time shopping together; I thought our shopping days were over.

Mom is happy.  She is smiling a lot.  My pleasant mom has returned.  We dance all day, even as she's ready to climb into her bed, we dance.  I am psyched... we have more good days, more time for more memories with dear old mom before her last day on Earth.  

I am grateful for the extra time.  I am grateful for Dr. Barton and his lucky guess.  I am grateful for a fabulous weekend filled with song and dance.

20 March 2011

Bringing Back The Good Days

(This blog post has been modified since first publishing.)
Ma having Acupuncture
Last Wednesday, my mom visited our Naturopath Doctor for a follow-up visit.  Mom isn't on any pharmaceutical drugs to treat her Lewy Bodies Dementia, she takes natural remedies that Dr. Barton recommends.  Our goal has always been to help bring more good days than not so good ones.  We've had lots of success over the last 2 plus years.

The last month my mom has shown a dramatic decline in her cognition and ability to communicate.  Her mood has been a bit anxious; the word NO has become her favorite sound.  Past experience dictates that NO is her only way to control some thread of her life.  Even if the answer should logically be YES, she will say NO... frustrating for all Care Givers that provide care.

Acupuncture helped her find her voice, restoring her ability to speak sentences using the right words to express herself.  Communicating with ease always seems to reduce my mom's anxiety, replacing unwelcome behavior with singing and dancing.

A couple of months ago, my mom wanted to stop Acupuncture.  Treatments were 2 times a week for several months; her cognition improved.  Mom wanted to stop Acupuncture, no reason given, she just didn't want to do it anymore.

Gradually, without Acupuncture, she lost her ability to communicate and incontinent episodes became the norm; poop and pee often greeting me in the twilight of the night.

Tomorrow, she will have Acupuncture again, we are hopeful that it will improve mom's word finding as it has in the past.

During our visit last week with our ND, he recommended Lithium Orotate supplement to help with her cognition and mood.  Lithium Orotate is known to increase gray matter in the brain, often given to Alzheimer's sufferers.  Dr. Barton suggested that we give a small dosage of Lithium Orotate a try, so we did.

Lithium Orotate is an easily absorbed version of Lithium, unlike the pharmaceutical version that needs to be taken in large amounts and require blood tests to monitor toxicity.  Naturally occurring in nature, it's a mineral that is often used to help treat manic mental disorders including Alzheimer's.

Mom's had 4 doses of Lithium Orotate; yesterday was her best day in a long time.  She was dancing and singing to music all day.  I was downstairs and I heard stomp, stomp, stomp... she was dancing up a storm, smiling and talking to all of her friends, especially my dead brother, Ed.

I'm hopeful for another good day today.                                          

Mom slept through the night last night and didn't even remove her Depends!  She woke up this morning to use the toilet and went back to sleep for a short nap.  Upon awakening the 2nd time, she took her supplements without much hesitation; lately she has forgotten how to swallow capsules.

Mom's dancing again, day two.  Shockingly, she dressed herself appropriately today!  Picking out her outfit that matched and put her pants and shirt on without any help.  What a breakthrough for her, she feels like she can and she IS!

I am hopeful that I will be able to get through the wait time involved with placing her in a good quality home that we can afford.  With the help of Dr. Barton, we are bringing back the good days once more; I'm grateful.

18 March 2011

Watching Parents Die

My mom and dad on their wedding day
August 1956
January, 1979... the dawn of a new year.  I was a 2nd semester Freshman in college and life was more fun than it had been for me since I was 6 years old.  My dad was alive.  My mom was a mom, she took care of her family and loved them all very much.

Dad was finally getting ahead in life.  He was 48 and a recent college graduate; leaving school in 9th grade for the school of hard knocks.  My dad was a likable individual, he smiled and sang all the time.  He had a beautiful voice and would often tell me stories of winning singing contests.

One story he told over and over, laughing while he told it as though it just happened.  He was about 12 and there was a talent contest in Chelsea, the city where he lived.  He got up on stage, got so nervous that he pee'd his pants.  Instead of running off the stage, he began singing, "Give me five minutes more..."  He completed the song, got a standing ovation and won the contest.

My dad appeared fearless to me.  He taught me so much just by what he did and how he was in life.  He worked hard, loved his family and making people happy.  Dad was an excellent party host.

One night in January 1979, my dad took us all out to dinner to the Hilltop Steak House.  I was psyched.  I loved going out to dinner with my family, it was always a big treat.  This one night, the restaurant was crowded and we had to wait.  We waited in the lounge.  I was finally of legal drinking age so I was able to have a drink with my dad.  Yay!

My dad took a sip of his High Ball and he immediately became ill.  He broke out in a sweat and was feeling nauseous.  We had to leave, we couldn't stay at the restaurant, he was sick.  I remember coming home with my dad, making him saltine cracker sandwiches with a slice of butter slapped between the two crackers and a cup of coffee.  Food that I now know was the WORST food for me to feed him.  I was making his situation worse.

Dad went to the ER and he underwent tests and an operation; prognosis was Pancreatic Cancer with 6 months to live.  It was crushing news, but my dad, the fighter that he was, didn't let it get him.  He knew he was going to die and he felt bad that he was leaving my mom at such a young age.  Instead of becoming depressed, Dad prepared my mother.

My dad and my mom used to go for walks along the beach.  I'm not sure exactly what my dad was telling my mom, but I do know that my dad was preparing her for his death.  It was sad but also sweet to see them drive off for their daily walk along the beach.  Their days together were numbered and my dad was going to make them count.  He did.

Dad withstood chemotherapy and radiation treatments.  Both made him more ill and seemed to piss off the cancer cells; they spread like a ferocious lion eating it's way through a hen house.  My dad was fading fast.

His last words to me, which I believe changed the course of my life were, "Susie, you are partying too much.  You are going to drop out of school like your sister.  Please don't be a disappointment to me.  You are better than that, make me proud."  I never forgot dad's words.  Words that truly saved me.  He died the next day.

Dad died after 7 months of suffering; the day he passed was the worst day of my young life.  I lost the only person in the world who encouraged me and often approved of me.  He left this world disappointed in me; I didn't have his approval and that was crushing.

On the day that dad passed, I promised my mom that I'd take care of her when she became an old lady.  Maybe I was trying to seek my dad's approval from the other side?  My mom laughed at my promise, never believing it would come true.

I spent my life building a successful career.  I became an over achiever.  My dream of being a 3rd grade school teacher went out the window because the salary wouldn't afford me the opportunity to take care of my mom.  My mother NEVER thought that I would be here care giver, she expected it to be one of my other sisters.

Only when I bought a house for the 2 of us in 1998 did she believe me.  Years have passed since my mom and I became roommates.  I am now witnessing the slow death of my mother, which is just as heart wrenching as watching my dad die in gut wrenching pain brought on by cancer.

Often, I find myself praying for my mom's end day to come soon, it's horrible to watch her quality of life diminish.  Her loss of control over her life is the hardest part of her decline to watch.  She blames me for her inabilities and has begun to tell me that she doesn't love me.  It used to hurt and make me cry; not anymore.

I have done all that I can do for my mom.  I miss her every day, even though she lives in the same house.  I miss how she used to help me in the house.  How I would come home and my dishes would be done and the sink would be clean.  I miss how she used to make me mushroom soup.  I'd call her from an airport somewhere and tell her what time I'd be home.  She always had something hot and ready for me to eat when I got home after a long trip.  It didn't matter if it was 1 AM, mom was always up and greeting me.

I do wish my dad could have lived longer so that I could have had more memories with him.  Instead, I got the gift of my mom.  We have had some awesome times together and some extremely difficult ones too.  I'm sure if there's a life after death, my dad approves.

So... it's not easy watching ones parents die, but what I'm learning is that there's a blessing hidden in every relationship we have with other humans on Earth.  You, my reader, you too are a hidden blessing in my life.  Thank you for reading my words and encouraging me to write every day so that you can find my prose.

15 March 2011

What Made Me Do It?

View from the top of Haleakala Crater, Hawaii

Care Giving, it's not for everyone and at times, I honestly believe it's not for me either.  It just took me until the end of my time as my mom's full-time Care Giver to figure it out.

Lately, I've been reflecting on the experiences as a Care Giver for my mom, all the phases that we've made our way through. Thinking to myself, "Ah, now we figured it out," only to be disappointed by another decline and increased dependency; changes that steal a little more of my mom, leaving me with an 81 year old baby.

What made me do it?  Why did I chose to be my mom's Care Giver?  Why have I worked so hard to find a way to ease the progression of her illness?  Why have I been a carer for people my entire life?  What was my motive?

Now that I've gone through life as a Care Giver, I realized that I do it for approval.  I've always wanted approval from everyone around me.  I wanted to be noticed and to be deemed as a worthwhile person, someone who's needed.  I was searching for love and affection.

I chased approval but could never catch it.  I was looking for approval outside of myself... I would never obtain what I was seeking.  I had people all around me but still felt alone and empty.  I did more and became more miserable.

Approval.  We all want to be liked and accepted.  We want to be part of a Monkeysphere, where we feel part of a community and recognized for our greatness.  The race for approval will make us do things that we never thought we could do; the need for the feel good approval buzz is our driving force.

My mom is demented and the one person in this world that I have been chasing for approval my entire life.  It never came.  I realize now that it will never come from my mom, it needs to come from within me.  Only I can make myself happy and feel satisfied with my life choices.

Approval is like God, it's within.  You can't see it, you feel it and we always seem to look outside of ourselves for it.  Looking outside of ourselves for approval or God, rarely leads to a happy ending.  Even those who go to church all the time are seeking approval from a God that is outside of themselves... no wonder folks "sin."

We want the approval blessing from others in our circle, especially family.  Rarely does it come and when it doesn't, our feelings are hurt.  Words are spoken, words that cut and can't be retrieved; we find ourselves farther away from the very thing we desire.  Hard feelings begin to build a wall, sealing in our only chance for approval.

Some of us will try harder and then there are those of us who just say "screw it, I'll never be good enough."  I happen to be one of those folks who tried harder for approval.  I became an over achiever.  Even while my mom declined, sinking deeper into her demented world; I tried to gain her approval.  She isn't capable to give me what I want or need any longer; she never was capable because I held the key to what I wanted.

Chasing approval of others brings sadness.  Our expectations are never met because we are not even sure what it is that we expect.  We search.  We come up empty.  We do more and it brings more of the same hollow pit in our gut longing to be filled.

Love yourself.

What I've come to understand fully is to approve of myself first and then the rest of the world will also approve of me.  I need to have the approval of the most important person in my world... ME.  How can anyone else approve of me if I don't even approve of me?

My dad used to tell me when I was a little girl, "Susie, the only one that you know exists is yourself.  When I walk out of this room, I don't exist anymore, you don't know for sure if I do because you can't see me.  Be true to yourself and the world will be yours."

Finally, after so many decades, I understand what my dad was attempting to teach me.  I approve of me.  I love me.  My world is mine.

What made me do it?  I was searching outside of myself.  I was looking to other people to fill my void, even if it meant over extending myself, compromising my personal happiness.  I was never happy because I didn't feel satisfied, something was missing.

However, I did discover that the answer was always with me, it just took me 50 years to find approval.  I approve!

12 March 2011

The Compassion Pit

Steve Dean Art
Compassion is a deep emotion that has played my heart strings for as long as I can remember.  Folks that are ill or need help, always ring my compassion bells, catapulting me into action.

Why?  Not sure.

Compassion.  I like being compassionate.  Something about giving of myself to another human that really needs the help; it gives me a sense of well-being and goodness.  It can be addicting.

I read an article the other day about "The Monkeysphere."  It's an interesting concept about how many people you can actually care about; monkeys can care about 50 other monkeys.  According to the article, humans can only care about 150 people deeply; everyone else, not important enough for us to care.

I believe because of "the Monkeysphere" concept, we can flip people off on the road while driving.  We have no attachment to these strangers, we just don't care about them; compassion on the road?  No way.

"F-YOU!  Where'd you learn to drive?  The 5 and 10?" 

Compassion allows us to reach outside of the 150 people in our Monkeysphere.  Because of compassion we have the power to make our world a more peaceful place for all of us to co-habitat the planet Earth.


I found this website where you can practice the beautiful art of Compassion.

This is the place where one can be an anonymous listener or an anonymous venter.  Seems to be more listeners than venter's; perfect for care givers who need someone to offer some compassion during those really tough times of caring.

Give it a try... if you need to talk to someone, log in as a Venter.  If you are feeling good and want to show some compassion for a fellow human somewhere on this big blue planet that isn't in your Monkeysphere... log in as a Listener!

11 March 2011

Law of Numbers: Increasing the Odds

Hickory Hills Golf Course

Several years ago, I studied and took a test to become licensed to sell insurance.  I have believed that it was a huge waste of my time and in my opinion, a legal scam that I had bought into; until now.

I did learn one thing while studying and being trained to be an Insurance Agent, I learned about the Law of Numbers.  If you cast your net out far and wide, the law of numbers (averages) will work in your favor, bringing you something in return for the relentless hours of searching for a client.  In my case, it's in search of a bed for my mom in a nursing home.  It's way past her time to be in a skilled nursing facility.

The Law of Numbers is my new approach to finding a nursing home for my mom. By visiting as many places as I can and putting her on as many lists as possible, I am increasing our odds for a bed opening for her.

My husband made up a spreadsheet of all the homes that we will visit based on our careful review of Medicare and HSS ratings.  We will track calls, our home visits and our impressions of the facilities.

Today, I followed up and called all the homes where my mom's already on the list.  I'm pinging them to let them know that we are waiting.  I thank a Nun for teaching me that "the squeaky wheel gets the oil."  I'm using this approach too.

I'm also...

Praying to Mother Mary.

Visualizing my husband and me happily married, enjoying married life.

I am on vacation in my mind, enjoying a round of golf with my husband on a beautiful golf course in a pleasant climate.

In my thoughts, my future is happy and free of all worries because every day in every way gets better and better.

I love my future vision, it brings me peace and hope for better tomorrows even if the world appears to be going crazy.

10 March 2011

Where the Wind Blows

Steve Dean Art
Lewy Bodies Dementia is like the wind; it blows when it blows and can disrupt our lives when we least expect it.  

Certain types of foods seem to wake up Lewy, bringing this dreaded illness front and center into our lives.  From my experiences, Lewy can appear with a vengeance, especially after my mom eats something processed or white.  White bread made from wheat is a sure way to bring on the crazies as well as explosive bowels.

I've been cooking with more spices and herbs, ingredients that always seem to give my mom more good days.  Turmeric and black pepper combined is amazing how well it works with my mom's cognition.  She's less confused and can find her words more easily.  Communication is better after my mom eats a meal with thyme, oregano, cumin, coriander, rosemary, turmeric and black pepper.

Last night, I made her favorite, Eggplant Parmesan (gluten free.)  I added a teaspoon of turmeric to the tomato sauce; it added a nice kick of flavor.  My mom loved her dinner, eating ever speck of food off her plate.  

When my mom doesn't like her meal, she will move it all over her plate and cover it with a piece of tissue.  It reminds me of the old trick that my classmates and I tried when we were kids in Grammar school.  The nuns would walk around and make sure we ate our lunch, always able to detect the child like deceptions that more food was eaten.

Nuns would always say, "The children in Bangladesh would love to have this lunch.  You need to eat your food and be grateful that you have food."    Logic.  It didn't work on me as a kid and definitely doesn't work on my mom who has reverted to her second toddler-hood; thanks to Lewy.

Today my mom woke up in a good state of being.  She was alert and able to swallow her supplements without much coaxing.  She ate all of her breakfast, oatmeal and blueberries.  Dressing her was a breeze.  This morning, my mom was able to converse with me more than past mornings.  It's a good day.

Blood pressure reading was very good this morning; typically running 200/70 something in the morning when she wakes up.  Today, it was 150/70 and that was right after she had eaten breakfast!

I've always noticed that when my mom's Blood Pressure and Blood Glucose readings are low, she tends to have better cognition and her word finding is such that she can communicate.

Today, the wind has blown Lewy away.  I am grateful.  I wonder if it's the herbs and spices that I put in her dinner last night that chased storm Lewy out of town?

09 March 2011

The Midnight Horror

My mom seems to have an issue with chronic Urinary Tract Infections.  Just as soon as she finishes one course of antibiotics and her behaviors level out to near "normal," she has another infection begin to brew.  It's frustrating for her and all of us who care for her.

She needs to drink more water; she refuses to drink water most of the time.  She prefers coffee which is the worst thing for her, it's dehydrating.  If I don't give her coffee, she becomes a colossal bitch.

I've learned that UTI's breed more easily when sugar or simple carbohydrates are ingested.  Now that my mom is at "school" all day, I can't really control her diet and make sure that she eats only fruits, vegetables and lean meats.

I've learned that restricting her diet to avoid UTI's and other weird behaviors, is also counterproductive because she becomes unhappy and has weird behaviors come on anyway because she's upset.

UTI's, odd behaviors and bad moods are a vicious cycle that I don't know how to fix so I say "screw it."  I let her have some sugar and simple carbohydrates in the form of a Peanut Butter and Jelly on Udi's Gluten Free bread.  She is always happy when she's eating her PB&J; they put her in a good mood.

I know that my mom has a UTI brewing; we tested her with a home UTI test kit by Azo.  The nurse from her Day Program used it yesterday and told me that she does have one coming on.

I knew it... she always forgets where the toilet is at night when she's got a UTI.

Last night, we had an issue, she couldn't find the bathroom.  She has a horrible habit of taking off her diaper in the middle of the night and then running through the house, with feces dropping out of her pie hole all over the carpeting.  The worst is when she steps in it and tracks it all over the house.

Last night at midnight, we had such an event occur.  It was the worst shit storm I have ever seen and had to clean up.  I feel horrible that my husband woke up and helped clean up the poop off the carpet while I cleaned all the crap off my mom's body; poop all over her feet, between her toes and all over her legs.

Cleaning her up, I gagged so much that I still feel the ill effects of dry heaving this morning.

It's time that my mom goes to a home.  I pray that a bed opens for her soon.

I am asking anyone who wants to pray for a bed to open for her to please pray, your prayers are welcomed!

Today, I'll look at more homes and get her on more lists.  Maybe the Law of Numbers will work in our favor and get my mom into a home sooner than later; this works for insurance companies, maybe it will work for me?

Never did I want to wipe my mom's ass, which I do every day now.  Cleaning up a large dump of human feces is something that I could never get used to doing; not for ANYONE... not even myself.  I chose to never have children because I didn't want to deal with poop and pee on a regular basis.  Who knew I'd have to deal with my mom's?  God help me.

Last night was a true horror.  Even after we cleaned up the mess and I went back to sleep, I had a nightmare that my mom had woken up and taken a huge dump in her closet.  I gagged in my dream; it woke me up.  I had to check the closet... it was just a dream caused by the midnight horror of trails of shit throughout my home.  God help us.

Hello God?  Are you listening to my prayers?  I really could use a miracle where my mom's concerned.

06 March 2011

He Remembered Me!

Uncle Al recognizing Nikki,
"You are beautiful and getting so big, you are a big girl!"
It's been awhile since I visited Uncle Al.  I've felt bad that I haven't been able to get up to New Hampshire to see him.  On Friday last week, we visited him.

He was hallucinating like my mom.  Talking about the children on the roof and all the noise that they were making.  He would smile when he talked about the children.

Uncle Al was reaching out with his hand as though he was grabbing something out of thin air.  A few times we thought he was going to topple out of his chair and land on his face.

Uncle Al and Maryann
He needed background music
for his
Initially, Uncle Al didn't really recognize us.  Maryann and I talked to him, we held his hand and rubbed his back.  He smiled.  We put headphones on his head while his favorite Classical music echoed through his head.  Uncle Al loved the music.

Our little Nikki
She's such a good little girl
Uncle Al had lots of visitors on Friday, most were visitors that we couldn't see. He could see them;  all that really mattered because he was happy.

Nikki sat quietly in a chair with my iPad, pressing the screen, looking at all her pre-school applications that I had downloaded for her.  Maryann and I visited with her dad.  It was a good day.

Nikki was excited that her Grampy recognized her.  She turned to me after Uncle Al remembered his little Princess and said, "He said I was a big girl!  He remembered me!"

 All she could talk about after we left Uncle Al was how he recognized her.  Later she said to her mom, "Mummy, Grampy remembered me!  I want to visit him all the time so that he doesn't forget me again."

Maryann and me
Nikki was our photographer
not bad for a 4 year old!
I'm grateful for Maryann.  She understands the pains of care giving; she has lived it.

Maryann has walked the Care Giver's path before me; she understands and knows what I'm going through.  I really don't know what I'd do without her.

Maryann is my family and I love her.

I also believe that together we are getting through the pains associated with watching our parents fade into the light.  Maryann is a blessing in my life; I am grateful.

Thank God for all Care Givers everywhere; we understand and we really do know how to help fellow care givers who have found themselves stuck in a hole.

05 March 2011


My Mom's Bathroom
... at least she didn't pee in the bucket!
I've been very tired lately, not getting enough sleep at night being the main culprit.  Sleeping with one ear open for my mom is beginning to wear me down, it's causing me bouts with insomnia.  It's horrible to be sleep deprived, ones entire day becomes a blur and the ability to think positive becomes more and more challenging.

Last night, I couldn't wait to go to sleep.  I had visited my cousin Maryann yesterday, we swam in her complexes indoor pool and soaked in the Jacuzzi.  It was nice.  Driving home, I felt like that Simpsons episode where Homer was sleepy while driving.  Every car that he passed on the road began to look like a bed... that's how I felt on my drive home.  I just wanted to sleep.

I didn't sleep, I kept control of my truck and made it home safely.

My mom arrived at 4:30 yesterday.  I had dinner in the oven.  I have noticed that when the house smells like a home cooked meal, my mom is less confused.  Getting her to climb the stairs to her room is easier when she smells food on the stove.   The smell of food being prepared sets the stage for a peaceful evening with my mom.

When I'm tired, I have less patience with my mom which triggers unwanted behaviors.  I'm aware of how my mood affects my mom; yesterday, I put extra effort into keeping my emotions in control.  It worked.

Mom was tired yesterday too.   Bedtime was a welcomed event for her and me.  I love my mom's bedtime.

1:30 am...  "HELLO?!"  Over and over again my mom called out in the dark of the night, waking me out of a sound sleep.  Rushing up the stairs, I heard my MIL calling my mom's name, she had panic in her voice.

I reached my MIL's room to see my mom climbing into her bed.  My mom was sleep walking, she didn't hear a thing, she saw the bed and was getting into it.

I grabbed my mom around the waist and pulled her off the bed.  I led her to her room.  My mom had removed her diaper; a nightly routine for her.  I went in to her bathroom to get a clean diaper to put on her before I tucked her in bed.  The diapers are kept in her bathroom.

I was groggy.  Walking into her bathroom, I noticed her dirty diaper on the floor.  I picked it up.  It was heavy... she peed.  I took one more step only to step in a huge puddle of urine... in my bare feet!  Ewwwwwwwwwwwwww!  I totally hate it when I step in urine in the middle of the night.  I was pissed (ha ha... ya, a play on words.)  At least it wasn't poo... stepping in her poo is way worse.  Yes, I have stepped in her shit in the wee hours of the morning.

My mom, her night gown was wet, she didn't pull it up once she reached the toilet.  God help me.

Getting a diaper back on her was nearly impossible.  She stood with her legs locked and stiff; she wasn't here.  She was sleeping as she stood.

"Ma, lift up your foot!"  I repeated over and over again.  Tapping the back of her calf, something that always seemed to get her to lift her foot in the past.  It didn't work.  I couldn't lift her foot, I couldn't move her.  Finally, I was able to put her diaper on, a clean night gown and tuck her into bed.

1:45am, I was cleaning my mom's huge pee puddle off the bathroom floor.  I didn't cry.

It's time for my mom to go to a home.  I pray that a bed opens up soon.  I need my rest.  My mom needs help 24 hours a day.  I worry that she's going to fall; slipping on her own urine that she sprinkles all over the floor or loss of balance when she walks.

I pray that she can hold out at her current Day Program.  The rule is, once she begins to wander, she will need to go to a different place that is locked down.   This week, the nurse told me that they keep the door shut in the room where the old folks sit; mom is starting to wander.  SHIT!

A change in her daily routine and the people she sees will create a huge setback for us.  Change is hard for my mom.  Routines make her calm.  She likes to know what's going on, even in her demented state of mind.

Please Universe... hear my pleas... please open a bed in one of the homes where my mom is on the wait list.  I can't care for her any longer.  I've done all that I can, even with help coming into our home.  Mom needs round the clock help, something that is increasingly more difficult for me to provide with each passing day.

03 March 2011

The Challenging Day

A sleepy mom, waiting for her ride to Day Care
God love my sister Ann, she bought me a Llewelyn Calendar for Christmas this year.  It's an awesome Astrological Calendar; I haven't had one in a few years.

Subconsciously, I've been avoiding getting one because the calendar identifies both challenging and rewarding days for each sign of the Zodiac.  

Do I really want to know?

The calendar has driven me a little nuts in the past.  I used to become obsessed with it.  Knowing when my "challenging" days are coming or if I'm in the midst of a challenging day, does something to my psyche.  

I begin to brace myself for a challenge.  Caring for my mom, every day has challenges, some days more challenging than the next.  

"Oh man... do I really want to know my tougher days?"  I ask myself.

Yesterday, I don't know what made me check the calendar, but I did.  Today is one of my challenging days; this month, according to the calendar, I have 5 freaking challenging days!  I hate it when the month brings more than 2 challenging days but FIVE?  

I brace myself.

I woke up this morning, mustering up all the optimism that I could.  I even jumped out of bed stating to the Universe, "Today is a GREAT day!"  I felt pretty good, was I convincing enough?

I woke up a little late this morning, only 15 minutes later than usual.  My mom, she was sound asleep, not in the mood to wake up.  Getting her up was challenging.  

I asked myself, "Hmmm, was this my challenge for the day?"

She didn't wake up in the middle of the night and remove her diaper.  Bonus!  No poop or pee to be cleaned up, how challenging could this day be?  

"Don't taunt the Universe Sue!"  I heard my inner voice scream.    Have I overcome the shadow of the challenging day hanging over my head, clouding my mind with apprehensions; what will today bring, I thought.

Suddenly, like a light switch turning off, mom forgot how to swallow her small supplements.  She had no idea what I was asking her to do.  She would reply to me in one word answers as though she understood, "Ok."  or "Sure."  Next? Nothing, she'd sit there and stare off into space.  

It's beyond freaky when she goes to Lewy Land.  No matter how many times I've witnessed it, it never seems to get any easier.  

Lewy Land sucks.

The clock was ticking, the time was moving closer to 7AM when Martha is scheduled to take her off to "school."  My anxiety began to bubble as my mom wasn't able to follow my simple instructions.  

Sweat beads began forming on my forehead; worried that my mom wouldn't be able to handle leaving the house today.  She NEEDED to go today, I couldn't handle a full day with her at home.  After all, according to the calendar, it is a challenging day for all Leo's!

I remained as calm as I could, deep breathing helped.  I was able to coax her to take recommended daily supplements.  She appeared to awaken as she ate her oatmeal.  I made and packed snacks while she had her breakfast.  

"I haven't had a sip of coffee yet!"  I thought to myself in horror... a challenge.  I was running on empty; I too was sleepy this morning.  

I needed caffeine. 

"Dressing... was this going to be challenging?"  I found myself thinking a negative thought.  I screamed silently, with my inner voice chattering "Stop!  Happy thoughts, happy thoughts... visualize warm sunny beaches in Hawaii... happy thoughts!" 

I asked God to help.  "Please God, let this dressing go well, we only have 20 minutes before Martha arrives."

My greatest fear is that mom will soil herself and need to be changed at the exact time that her ride arrives?  Again, I forced myself to change my thoughts and I began to recall the vacations that I've had over the years; fond memories that are helping me get through the daily ass wipe for my mom.

God help me.

Dressed, coat on and waiting at the door for Martha, my mom breaks the silence, "Uh oh.  I got to go."

"Now?!  Are you kidding?"  I replied with a stressed out tone.  

"Here's the challenge!"  I thought.  My worst nightmare, a vision that I've had repeatedly over the last few months; my thought became reality.  Mom has to poop, Martha was about to pull into the driveway any second and the bathroom is upstairs.  

Please dear God, PLEASE let us make it to the bathroom!

I left the door open, my mom's coat on the chair with her lunch bag in view through the glass storm door.  Rushing in a panic, I nearly carried my mom up the stairs and to the toilet.  Cleaning her and changing her pants was not something that I wanted to do just as her ride was arriving.  "Oh, God!  Please help me!"  I cried inside, holding back my tears.  I know from experience that my tears make matters much worse.

My pleas to the Heavens were answered;  she made it to the toilet!  Ah... now that wasn't so challenging.  However I chose not to taunt the forces of the Universe and showed gratitude for the blessing that my mom's business landed in the appropriate location... the toilet. 

"Thank you God!"

Learning from past experience, I put on rubber gloves, wiped my mom's fanny and pulled up her pants.  Nothing worse than having a feces mess to clean when her ride is waiting.  I've done this once and hope to never have to do it again.  The thought makes me shudder in fear.

Although my calendar told me that today is a challenging day, we made it through the morning without anything nasty to be cleaned.  My mom is out of the house and I have the day to get things done for myself.  

"Hello, Universe?  I'm grateful for the morning we had, it wasn't as bad as it could have been.  Thank you."  Sue

One thing that I have to remind myself about the Lewellyn Calendar, challenging days are only as challenging as I chose to make them.  I need to use the calendar as a tool to raise my awareness; lay low and not take things so seriously, especially stuff that I read.  

Like everything, the challenges will pass and the skies will bring better days.  There is no good reason to hang on to the challenges, they don't serve my higher purpose to achieve happiness.

My God wants me to be happy all the time.

Today, I choose to expect the best and the best will come.  It's up to me to rule the stars and not have the stars rule me.  

A popular Astrologer from my teen years (loved his reports,) the Cosmic Muffin, used to say at the end of his daily Astrological forecast, "It's a wise man who rules the stars, but it's a fool who's ruled by them."  Words that definitely ring true for me today.  I choose to be the wise woman today and rule the stars.