The Freedom Buzz

Care Giving for my mom with LBD had become oppressive; especially when she started falling all the time.  Every day, she would fall.  She needed someone watching her 24 hours a day, 7 days a week.  Even with help from the MassHealth Community Based Program, it wasn't enough to allow me to keep her at home with me any longer.

It was not safe for my mom or me.  She was a heavy 136 pound woman.  Lifting her off the floor was challenging, but I managed every time.

The stairs were becoming more and more frightening; I worried that she'd fall down the stairs when she was chasing her hallucinations.  Helping her up the stairs, I never knew when she'd freak out and try to push us both down the stairs.

Life as a LBD Care Giver is not for the weak of heart.  We lose our freedom to live.  Our lives are slowly consumed by Lewy, waiting to wreck havoc in any life that it can touch.  I was beginning to feel as though I was losing my mind.

Sleep deprivation.  I have it.  Sleeping with one ear open, always listening; never able to rest.  Falls. Odd behaviors and exit seeking, add to the stress of a Care Giver.  Lots of tears are shed.

Care Givers, we feel forgotten in this battle with Lewy.  No one understands the needs of the Care Giver, doctors rarely ask how WE are... health care professionals seem to not even know that treating the patient and Care Giver jointly is beneficial to the overall health of both.

When our loved ones start to fall, Care Givers are initially looked upon with suspicion because of bruises.  False accusations come to a head like a big zit on your nose.  Investigation by Protective Services, all add to the stress of a Care Giver... I know, it happened to me when my mom began to fall and get bruised.

I was a prisoner in my own home.  All that I was doing to help my mom was going unnoticed by everyone.  My heart was heavy.  I was left here alone, forgotten, left to carry my mom.  I cried.  I got mad at my family, again.   I was beginning to feel resentful.  I wanted to run away and even began to think that if I died, it would be OK.  I didn't want to live.

I heard my dad's voice, "Susie, wait.  Time heals all.  You will never fail unless you quit.  Wait."

I waited.

I sucked it up and found some strength.  I called everyone.  I cried.  I begged and pleaded for help.  Elder Services Case Manager asked me why I couldn't watch my mom for 24 hours, why did I need more help.  I couldn't believe I was hearing these words... are you kidding me?  My reply, "I can't do this for another second."

"God!  Please HELP me.  PLEASE!  I beg of you... please help this nightmare stop."  Looking up to the Heavens above, hands in the prayer Mudra, I pleaded.

I prayed to Mother Mary.  I had repeated the "Hail Mary" so many times, that I can still hear the prayer in my head.  It's like a record on replay, over and over, I hear her prayer.  I see her image when I close my eyes.

My mom is in a safe place.  I'm grateful that she isn't able to speak right now, she'd surely say something that would hurt my feelings.

We have the Freedom Buzz, all of us in our home.  All 3 of us can't stay awake past 9pm.  The house is quiet.     We are enjoying going out when we want, not worrying about finding someone to stay with Jo.  I can go out in the back yard, I can sit on the patio and drink a cup of coffee or a glass of wine.  No jumping up every second that I think I hear my mom.

Brian and I can have conversations again, full conversations that are uninterrupted by my need to check on Jo. We can watch an entire episode of American Pickers or Top Gear together.  We haven't been able to watch TV together, an entire show that we both enjoy for a very long time.

Laughter is returning.  Brian makes me laugh, he's so funny.  I don't have to cook every day.  We can have just a salad or go out for ethnic food to spice up our lives.

Yesterday, we had Indian food.  I never liked the smell of curry.  Cooking with cumin and coriander over the last few years, it helps cognition; helped me to acquire a taste for curry.  Oh my God... the food was amazing.  I LOVE Indian food.

We are free, sort of.  Freer than we had been.  I still visit my mom every day.  I'm off to visit her now and help her eat breakfast.  I'll bring all her nutrients that I had been giving her.  Maybe it will help her to find her ability to communicate.

The freedom buzz is amazing.  The relief is like nothing we've ever experienced.  We did it.  I did it.  I learned a lot about myself.  I also learned that everything is possible if we keep our eye on the goal and ignore all the buzzing bees around our head.

I am grateful for my freedom.  Thank you God, Mother Mary and any other supreme being that answered my cries for help.

Mom Settling In

It's been surreal.  My mom is in a facility. I was unable to care for her another minute; I was spent.

Blood pressure through the roof; a weird headache that I've never experienced was the tell tale sign that there was something wrong.  I cried every day for months and on and off for the last 3 years.  This journey with my mom has been intense.

Relief from care giving; exhaustion leaving my being as sleep restores my inner battery to keep on keeping on.  I feel more alive.  Life was difficult this last few weeks.  My mom was falling repeatedly.  Her balance was way off, jumping up to chase hallucinations, with agitation from her inability to speak.

Just in the knick of time, a bed opened for my mom.  Friday, she started exit seeking at "work"; the indicator that she had outgrown the day program.  I picked her up from the program and drove her to the nursing home.

Knowing that external emotions affect my mom, I decided to go alone to the nursing home with her.  I held it together, I had to.  I didn't shed one tear, even though my mom gave me the old Italian "Stink Eye."  She is mad at me.

Abandonment issues from her childhood are prevalent, she is depressed.  I have visited her every day since she was admitted.  Yesterday, we brought her an iPod radio with our old iPod so that she could listen to Frank Sinatra.  Music calms her and blocks the noise of sirens going off in other patient rooms.

Today, I visited Mom and fed her applesauce with all her vitamins.. B12, Applpoly, Vitamin D3 and a 50 Billion probiotic.  She loved the applesauce.  I think it helped her to realize that I wasn't leaving her alone in this place.

I drove her around the grounds in a wheelchair.  She couldn't speak to me.  I showed her where the cows and horses had once grazed.  Her nursing facility was built on old farm land.  It's very pretty outside.

The breeze was nice this morning.  I could tell that my mom enjoyed getting out.  She held her little stuffed black cat; a toy I had bought years ago when her cat, Savita was a baby.  I couldn't help myself, it looked just like my mom's cat.  She was patting the cat this morning and when we went for a ride, she held her stuffed black cat like a little girl.

I had met a few other residents.  I introduced them to my mom.  Angelina is my favorite.  "Do you like Italian food?  Come to my house!  I'll make you a nice Italian dinner when I get home."  Every day, she says the same thing.

My mom enjoyed meeting Angelina; she looked like her cousin Angie, her favorite cousin that has been dead for years.  Angelina invited my mom to her house and said, "Would you like that, Josephine?"  My mom smiled and nodded to Angelina.

Mom spoke for the first time today.  I asked her what she needed and she said, "toilet."  Wooo hooo!  I raced her back in to the home and 2 aides helped her.  I didn't have to do it.

Off we went when her business was done.  I took her to the dinning room where they were having donuts and coffee.  My mom and I sat with Angelina and her friends.  They were funny.  One lady, Anna was such a bitch toward me... it made my mom laugh.

Our new found freedom is like nothing I have ever experienced.  Silence.  We finally have silence.  I can hear myself think.  I can relax knowing that someone is taking care of my mom, someone way more capable than me.

Thank God

Today I got the call.  My mom's insurance approved the out of network home that I found for her.

Placement is all in the works RIGHT NOW!

I'll bring my mom to the nursing home at 2:30 today after I pick her up from the Day Program.

Tonight... I will get to sleep without a baby monitor.

Thank you everyone who prayed or sent positive thoughts out to the Universe... IT WORKED!

Thank God!

Found A Bed, But....

It's been hell on Earth.  I am sick again; exhaustion has captured my being.  I cry more than I don't cry.

Yesterday, my mom nearly pulled both of us down the stairs.  I was attempting to help her walk up the stairs when she got home.  One stair from the top, she had some sort of hallucination.  Suddenly, she straightened her legs, stood on her tippy toes and bent forward as she pushed backward.

"Ma!  We're going to fall.  Stop.  Please, stop!!!"  I screamed as I hung on for our lives.

Out of breath, I managed to get us off the stairs.  My Polish Grandmother was right, I am "strong likem' bull."

My mom's paper thin skin got a tear on the top of her hand.  My blood pressure shot up and my head began to pound.

"How am I going to do this?"  I cried.

I called everyone yesterday.  I tried to get her in on a short term bed somewhere.  No one would take her because of her condition.  Then, I started searching Google, looking in areas that I didn't look before... I found a place where someone was being discharged today and a bed would open TODAY.

9AM, I visited the home and met the admissions person.  The facility is beautiful and perfect for my mom.  She will be in the rehabilitation unit and moved once a bed opens in the dementia unit.  She'll have physical therapy and speech therapy.  She'll have someone watching her round the clock.

I was excited.  The admissions person was checking with my mom's insurance to get her admission approved; I jumped in my car and drove home.

"I can see clearly now, the rain has gone..."  

The radio had an appropriate song on the radio when I started up my truck.  I opened the windows and sang along, out loud and with feeling.  I had hope.

Little glitches.  Phone calls all day.  I sit and wait for my mom to come home, hoping that today is the day I can move her somewhere safer.  It's not safe for her or me any longer.  Mom's way, way, way too much for one person to manage.

No more day care for my mom.  She's too much for them to handle too; they are afraid she'll be hurt.

I am praying.

Care Giver Sentence... Almost Over?

Caring for my mom is the greatest burden I've ever carried alone.  No word can describe it; if you want to know, live the life of a Dementia Care Giver.  It's heavy.

Mom has no idea who I am, needs assistance with everything, hates living in this house, wants to go with my brother Ed (who's dead.)  She fights anyone who tries to guide her; pushing back, digging her heels in the ground and making it impossible to direct her anywhere, especially toward the toilet.

Lewy Bodies Dementia is nasty.  No matter how much reading and research that I did on my own over the last 3 years, nothing has prepared me for this leg of the journey with my mother.

My one hope is that my experiences helps someone someday to prepare themselves emotionally for what is coming.  It's not pretty.

Mom has a new behavior; whenever she has to use the bathroom she pulls her pants down and proceeds to "find a toilet" ... wherever she stands.

Cleaning shit off the floor is horrible; seeing my mom prepare to relieve herself in an inappropriate place is akin to living ones worst nightmare.  I am stressed.

My mom needs a bed to open.  Sorry to sound like a broken record; I can't think of anything else that we need more.

I have NO idea how I am caring for my mom with one hand.  I'm amazed that I haven't ripped my stitches.

I'm grateful for the Day Program Director acting as our advocate; doing what she can to get my mom placed or get more hours of in home help while we wait for a bed to become available.

Mom is back to half days at the day program, returning home at 2pm every afternoon.  I am not ready for her to come home early.  I need more respite, not LESS!

I sob.

Will my prayers be answered?  Will I ever be released from the Lewy Bodies Dementia prison?  Hello Universe?  Hello? ... Please help end this horrid dream.  Is my Care Giver Sentence almost over?  Please send reinforcements!

The Mary Statue Mystery

Mother Mary in my garden.

I love Mother Mary.  I pray to her when I need help.  In the past, she has always come.  However, I have felt abandoned lately, even by Mary. 

Mary hasn't visited me in years.  Her signs, if she's been leaving them for me, have gone unnoticed.  Care Giving seems to dim my sixth sense.  Typically, Mary visits me in dreams.  I haven't been dreaming.

My mom is super challenging, often interrupting my sleep.  Cognition fluctuations are more and more frequent with greater intensity.  Hallucinations are back with a vengeance; scary hallucinations that require me to pick up the phone and dial Dream Master.

Talking into the air at my Mom's hallucinations help calm her, but sometimes not even my acting impresses her enough where she relaxes and can be redirected.

Most times I have no idea what my mom is asking me and often she answers questions opposite of what she intends.  The most important question that is often answered incorrectly is, "Ma, do you need to use the toilet?"

Today was challenging.

I cried after my mom left on the van this morning.  The pressure of caring for her while we wait for a bed to open in a home that is LBD qualified is indescribable.  My heart bleeds for Care Givers of LBD patients; we are often forgotten even by health care professionals.  No wonder so many of us get sick.

Saturday was a beautiful day.  I took my mom outside in the backyard and we walked.  My goal was to wear  her out so that she'd sleep at night.  I need to dream.  I need to solve my problems and dreaming is one of my most successful methods.

While we walked, I stopped in front of my new $16 find, a cement Blessed Virgin Mary statue.  My mom had her arm around me and rested her head on my chest, just like a little girl. 

Bowing my head in reverence, arm around my mom, I recited Mary's prayer; taught to me when I was a very small child.

Hail Mary, full of grace, the Lord is with you.
Blessed art thou, among woman
and blessed is the fruit of thy womb, Jesus.
Holy Mary, Mother of God,Pray for our sins, now and at the hour of our death...
Amen

"Thank you."  My mom said as she bowed her head.  We continued our walk.

I begged Mother Mary in my thoughts to help me and my mom.  I told her that I am scared.  I asked her for a sign.

The Mary Statue Mystery
... my sign

This morning, I looked out the back window and got my sign.  My Magic Mary had turned around and was facing the window.  I had her looking over the backyard.  I didn't turn her.  Brian didn't.  Who did?  Was it Mary?

I got my sign.  Mary hasn't abandoned my mom and me.  I believe that relief will come for us soon.

"Thank you, Mary!"

Who Knew?

Mom, exhausted one morning... waiting for Martha to drive her to "work."

Lewy Bodies Dementia is cruel, not only for the patient but the Care Giver. 

My personal goal over the last 3 years was to help my mom have more good days.  It's required vigilance on my part, watching and observing how everything from food to environmental changes affect my mom's mental state. 

Constantly, we need to modify our treatment plan.  It changes like the wind.  One day something will work and the next day, it won't.  It's becoming more and more difficult; fighting the battle with Lewy Bodies Dementia has compromised my health.

I'm not feeling great.  I don't know if it's my fight with depression, lack of sleep or if I have something going wrong inside my body.  It's a little scary.  I do find myself saying when I am worn out, "So what if I die... at least I won't have to worry about Lewy coming for me one day." 

It's horrible to lose hope.

Exhaustion did get the best of me.  The changes that Lewy brought with my mom's latest decline have begun to interupt my sleep once more.  I can't live without sleep and rest; it causes me to lose hope.

One of the Day Program workers recommended that we get a baby monitor so that I could hear my mom at night and know when she woke up.  My brilliant husband suggested that we check the 2nd hand children's store in our town.  We stopped in yesterday during our 3 hours of respite and low and behold, one sat on the shelf for $10!

Yesterday was a rough day for my mom.  She hallucinated a lot.  She was sleepy and slept most of the day.  When I got home at 2:30, I had her get up and get dressed.  I knew that I needed to tire her out.  My plan was to take her outside for a walk.

She wasn't able to walk in the sun, it seemed to make her stand frozen in place.  We walked around in the shaded part of the back yard.  I carried my music player around the yard with us so that we had background music to go along with all the birds chirping.  I sang and danced while we walked.

My mom even started to dance on the patio!  Her frown was turning upward into a smile.  She remembered the back yard.  We sat outside for a few hours, walking and sitting in chairs that we placed around the yard for resting spots.

Last night, it was tough to get my mom to go to sleep.  She was looking for Al, her brother who passed last month from his long battle with this horrible illness.  We didn't tell her that Al died, we kept it a secret because I worried that she couldn't process the news.  It is amazing to me that she sees Al all the time now, like she does my brother and father.

The baby monitor worked great.  I slept very well and actually woke up feeling rested today.  I'm sure this will help lower my blood pressure, a health issue that has recently made it's way into my life. 

Listening to my mom's light snore, I drifted off into a deep sleep.  At one point, I felt like I was sleeping in my childhood home with my mom in the other room snoring; such a soothing sound.

Mom didn't wake up all night.  My heart didn't pound and race in the middle of the night with every sound that I heard above my head.  No wonder my blood pressure is high these days. 

My husband got to enjoy a snoring concert between my mom and me.  We snored softly in unison and more importantly, we slept and I woke up feeling rested for the first time in way too long.

I highly recommend Care Giver's get a baby monitor, it will help ease the night time worry so that you can sleep.

Who knew?  I wonder why no doctor has ever recommended a simple device like this baby monitor to help me with my sleep disturbances? 

Patience Is A Virtue

Waiting for the van

Just when I adjust and settle in to new behaviors that come with Lewy Bodies Dementia, the proverbial rug is pulled from under me.  The stress caused by the uncertainty of this horrible illness is beyond overwhelming.

Dementia feels like it's contagious at times.

Am I NUTS?

When will this nightmare stop?

We deserve to live a better life.  We deserve to have happiness and fun.  We deserve peace.   My problem these days is how do Brian and I get from where we are right now to the freedom land?

Mom's declining more and at a faster pace.  She could not eat last night.  She was agitated.  Nothing worked to calm her, not even the homeopathic remedy, Hyoscamous... this always worked in the past.

2:39 AM... I woke up.  I didn't hear anything but I had a feeling.  Opened the door... night gown on the floor.  "Oh NO!"  I thought it was my mother.  It was just her night gown.  Mom, was laying at the foot of her bed, naked and curled up in the fetal position, shivering.  All I could ask myself is, how long has she been laying here like this?

The day program called me twice this week.  "Sue?  Mum's having a bit of trouble.  Can we send her home early?"  A call that I received on Monday which created a pool of tears large enough to fill an ocean.

Only one good day this week; Tuesday.

Yesterday, I was exhausted from the episode with my hand wound.  I laid down for a nap while my mom was gone and being looked after by a team of professionals.  Just as I was drifting off into a deep sleep, the phone rang...

"Hello, Sue?  This is Denise.  I was thinking, your mum is having difficulty more and more often... maybe we should cut down her hours.  I'm calling transportation to see if we can arrange it to start next week."  A message that took a few minutes to register.  Was I still dreaming is all that I could think initially.

I have always known this day was coming, where the Day Program wouldn't be able to care for my mom.  It's not a dementia specific Day Program.  The dementia program that she had attended initially was a lock down type places which my mother hated.  The program that she attends currently, is awesome with outstanding aides and nurses that my mother has grown to love... they are not trained in dementia.

We need a bed to open NOW, Universe... do you hear me?

Patience has never been my virtue.

Multiple Lacerations



 Yesterday was one of those days that I didn't think could get any worse... but it did.

My mom had a doctor appointment; I picked her up after lunch from the day program.  She was having depth perception and balance issues, picking at something in the air with hallucinations making frequent appearances.

Like getting a cat into a cat carrier to take to the vet, my mom planted her feet spread out her arms and screamed at the top of her lungs..."NOOOOOOOOOOOOOOOOOOOOOOOOOOOO!"

Standing at the door to the office building, my mom was in a full blown panic. I didn't know what to do so I started talking.

"Ma, I promise you, I will take you home... we are just seeing your doctor.  It's a routine visit.  Come on.  Please, Ma.  I'm begging you.  I promise you, I will take you home with me."  I reassured her in the calmest voice that I could muster out of my mouth.

Mom walked through the door... sort of.  I guided her, locking my arm under hers as I reassured her that she was coming home with me.

Fighting me all the way, my mom was difficult to move.  My pleading didn't really help much.  We got to the doctor's office door and she wouldn't go in.  She kept mumbling something and then saying, "Oh, no... you aren't getting me in there."

The doctor visit was uneventful; he agrees that it's time for my mom to go to a home.

Leaving the doctor's office, my mom now didn't want to walk out the door.  She had fixated on a door in the doctor's office, she wanted to know what was in there but I wouldn't let her open the door.  I guided her to the exit.  My mom was unhappy and mad.

In the parking lot, she wouldn't walk.  She planted her feet.  I told her that we were going to the truck so that we could go home and see Belkis, her Care Attendant.  She didn't believe me.  I moved her along, getting her out of the way of traffic.  My mom got madder and started to scream..."YOU ARE GOING TO BE ARRESTED!  Don't touch me!" 

By now, we had people looking at us and I was expecting the police to show up.  Hurriedly, I got my mom in the truck and drove away.  Driving for several miles, I found myself looking in the rearview mirror for blue flashing lights of a police cruiser.

My mom was OK when she got home.  She had poor balance and wouldn't sit still.  She kept jumping up and bending over to pick up an imaginary item.  My mom fell again.  I left her for 1 minute and BANG!... down on the floor.

Finally, with Mom tucked into bed, I headed downstairs to have a glass of wine and some sushi.  I left the sushi in the garage refrigerator earlier in the day; it was a special treat dinner for Brian and me.  The garage was dimly lit by the dusky sky. I didn't turn on the light. 

Walking toward the fridge, I tripped on something and flew through the air.  I put my right hand out to break my fall.  As luck would have it, there was a broken bottle on the floor of the garage.  The base of the bottle, with it's jagged edges was in the right place to slice my hand open.

"Oh no!!!!!!  Brian!  I gashed my hand!"  I exclaimed as I rushed into our room.

Blood gushed out of my hand.  Two slices.  It was gross.  I freaked.  I worried about my mom.  She hadn't had a bowel movement in two days and was due to have one any minute.  After not going for 2 days, her bowels are usually explosive... SHIT!  How was I going to go to the hospital for stitches?  I began spinning out and started to cry.  I was panicking.

"It will be OK Sweetie.  Rachel will stay with Jo.  It will be OK."  My husband comforted me with his steady confidence.

Rachel left in charge to listen for my mom waking up, Brian rushed me to the ER.

Thank God it was a slow night; the hospital was able to take me right away.  One hour and 4 stitches later, we were heading back home to have that sushi and the glass of wine that I had poured before I cut my hand open. 

The doctor told me that alcohol would slow down the healing process and recommended that I not drink wine (alcohol.)  I got home and drank the glass of wine, screw it!

My mom never woke up.  She slept through the night.  Sometime during the night she even woke up and used the toilet unassisted.  I love it when poo makes it in the bowl... it did.

Mom was alert this morning and having a good day.  I didn't have to help her out of bed like I have had to do days previous to today.  She was steady on her feet.  She remembered how to use a spoon.  She ate with out any coaching.  She had a massive dump that landed in the toilet, just before her ride arrived.

Not sure how I'm going to cook food or clean up after my mom, but I'll cross that bridge when I get to it.  Thinking about it is very worrisome.

Looking back at yesterday, it wasn't all that bad.  We were in and out of the hospital within an hour, my mom never woke up, Rachel proved to be a fabulous Mom-sitter and I was able to eat sushi with chop sticks, washing it down with a nice glass of Pinot Noir.

Raising Mom

Who knew that I'd end up parenting my mother, as I usher her toward her death day?

It's no secret.  I have NEVER wanted children.  The thought of wiping poop off another human's behind was never on my "bucket list."  I was a new teenager of 13 when my first nephew was born; he showed me that having a baby is way over rated.  Way too much poo and pewk!  Definitely not for me; I chose to have a career.

Thank you Joe and Drew (my 2nd nephew, born when I was 15.)

Instead of children, I befriended seniors.  Somehow I always managed to have one in my life; I always welcomed aging friends.  Looking back, seniors were the few people who seemed to accept me for who I am... they filled my cup with approval. 

First there was Walter, then Aggie and Tommy; folks who I believe prepared me to be Care Giver for my mother with Lewy Bodies Dementia.

Countless co-workers along my journey of life, warned me about the burden of caring for an aging parent.  I will never forget my friend Mary Lou's reaction when I told her in 1998 that I was buying a house; one big enough for me to move my mom in with me... "Sue!?  Are you out of your mind?!"

Yes Lu, I am.

Blinded by my desire for approval, I willingly entered into what would later become my personal Twilight Zone; raising Mom.

Here I am, 50 something and I have a baby that weighs 140 pounds; too heavy to lift.  Poop happens daily.  It's gross.  I'm sick.  My throat is always sore; my gag reflexes are definitely working.  Life has become more difficult for us, especially me.

My mom is fading like the tulips.  Once, magnificent and beautiful, the tulips and my mom are withering back into the Earth. 

"Where's my brother?"  My mom pleads with me for an answer. 

Diapers and drool fill my life.  Loss of balance and falls frighten me.  In abilities, new ones showing themselves daily.  Blank stares at her oatmeal bowl and spoon; no understanding of how to operate the spoon in order to feed herself. 

"Here Ma, open up... yup, that's it.  Open your mouth and try this..."  Every day I have to coach my mom, remind her how to eat.  Once I get her started she can do it herself.

Every day I have no idea what will greet me.  Will it be a trail of poo smeared into the carpet?  My mom laying on the floor?  Will she remember how to get out of bed?  Will she be alive?

Raising Mom is sad.  She can't learn, she forgets.  Every day, she requires more when my emotional and physical well of life is running on empty.   Yesterday, she forgot how to walk up the stairs at the top with only one more stair to climb.  Instead, she pushed backward... nearly sending both of us topling down the stairs.

"Ma!  You have just one more step... step up!  Just one more.... please, I am losing my grip and we will both fall.  Please!  Just take one more step up."  I pleaded with her yesterday when she got home from the day program.

Out of breath, holding on for my own life; I found the strength to lift my mom up the last step.  It was frightening for me.

My mom NEEDS a bed to open sooner than later.  I call every week, checking and reminding the admissions people that we are anxiously waiting.  I am gracious when I call, even though my mind is spinning with questions that could help give me an indication as to how much longer we need to wait.

I bite my tongue, wanting to ask... "So, is there anyone dying?  How far along in hospice are they?  Any ETD's (estimated time of death) that you can share with me?"

Raising Mom is no fun.  I need help, not just the day program help but help on the weekends.  Weekends are the hardest for me.  My mother gets bored.  She requires 24 hour care, care that is overwhelming.   Loss of balance, chasing hallucinations and pulling her pants down wherever she stands when she needs to use the toilet. 

My mother fights me. "No!  The bathroom isn't there... hurry!  Come on."  My mom will scream at me when I try to escort her to her toilet.  She plants her feet and pushes back, refusing to move forward and demanding to use the toilet that she believes exists.

It is stressful.  My mission in life is to get my mom's waste to land in the toilet.  Wiping her ass is the least of my worries these days.  I never wanted children and now, I don't think I want a mother anymore either!

My mom is having difficulty at the day program.  Sent home early on Monday because she was wandering and difficult.  I needed Monday to chill out because the weekends are extremely difficult with caring for mom.  My mom can't handle going to the supermarket with me anymore.  It's too much stimulation and it sends her into weird states of being.

Raising Mom is challenging and heart wrenching.  I can't help but feel alone in this nightmare... because I am. Watching my mother die a slow and confusing death, I wish for good health for myself or to die before I get an illness that scares people away.

Time Passes By

My Mom when she was 18, her favorite time of her life.

It's been quite some time that I've sat down and wrote a blog post. 

Life has been insane for me.  Cautious to avoid sounding like a broken record to all my readers, I opted to not write.  What can anyone do for me?  Not much these days, so what's the point of writing about my emotional pain?

I have learned that Care giving does not get easier when raising a demented parent as it seems to get when raising a child.

With children, they are inquisitive and learn... seniors with dementia, they are inquisitive and they are unable to learn.  Seniors move backward, children move forward.  Frustration becomes a regular part of the lives of both the demented patient and the Care Giver. 

Each day becomes an adventure, never knowing what new behaviors will become part of our daily routine.  Fluctuation of cognition, loss of balance, poop, pee and diapers, is now our new normal way of life.  It is challenging.  Will I survive my mom?

"Ma, do you need to use the toilet?"  A statement that is asked often in an attempt to avoid a hazardous waste clean up off the floor.  Making my mom's poo my business is unpleasant... how did this happen?

Time passes by quickly, thank God. 

How much longer do I need to endure caring for my mom?  I pray every day for a bed to open in a home. 

Today, I do feel like I am living a prison sentence.  I am not free to enjoy my life and do things that I want to do.  It's a struggle to stay happy and positive. 

Life is short and can end at any time for any of us.  Care Giving for my mom with Lewy Bodies is sucking the life out of me; I fear that Care Giving is making my life shorter.  I beg the Universe to end this lesson of my life; I'm done and I need to live before my end comes. 

Time, it passes by quickly!

I have been forcing myself to do things that normally bring me joy. 

Gardening! 

I have been weeding, digging in the dirt and building gardens that are beginning to come to life.  For the first time since my mom went nuts, I'm starting all of my plants from seed.  The rewards and the good feelings that the garden will bring me during harvest time, will surely lift my spirits; an infusion of life into my tired soul.

Uncle Al and Mom
February 2009

Mom's been seeing Uncle Al a lot.  Last night, she started to cry, "Where's Al?  Where did he go?  I miss my brother; I want to know where he went.  I love him, you know." 

"I'm going to die."  My mom exclaims repeatedly. 

"If I'm here tomorrow..."  Another statement that my mom makes often.

I wonder if she can sense death coming?  I wonder if it's why she's always looking for doorways that don't exist?  She wants to be with her brother Al, but she's scared to die. 

"It's OK Ma.  When you do leave your body, you will begin an eternal life; you will look like you did when you were 18 and had a 22 inch waist.  Your body will be healed and free of all pain.  Everything will make sense to you and you will more than likely want to come and tell us what you've discovered.  I promise to pay attention and see you when you come to me."  I hoped that my mom would be happy to know that in the afterlife, she will appear how she looked during her favorite time of her life on Earth.

Time passes by and brings new beginnings with each end.  I am anxiously waiting for the end because I am beyond ready for a new beginning.

I'm worn out and need a miracle today.