Hospice... Is It The End?

Mom's in Hospice care as of today.  I signed all of the papers and met with a Hospice Social Worker.  I met Mom's Hospice nurse, he is awesome.  His energy is so calm, even while I felt like I was on the verge of falling apart, Mom's nurse helped me hold it together in front of my mom.

Comfort measures only.  No heroics to keep mom alive, just keep her comfortable until the end arrives.  It's all I ever wanted for my mother.

Mom could pass within six months, she could improve and be discharged from Hospice Care.  No one really knows.  All I know is that I'm grateful for the extra help to care for my mom.  I may get to take more time off from visiting the nursing home ever single day.

For three days, my heart has been in my throat.  I haven't been able to write, my words wouldn't come as easily as they do when I typically sit down and write.  During a rare moment, I was speechless; words choked and unable to come out.  Tears.  Few flowed but so many more remained bottled up inside, holding them in, fearful to grieve; I believed that I needed to stay strong.

Hospice will help not only my mom but me and my family too.  Any of us in my family who may need to talk to someone about our mom, her illness and her impending death; we have someone to reach out for counsel.

Today, mom was out of it when I arrived.  She was sleepy and slept during my entire visit from 10:30 until 2:30.  She barely recognized me.  I couldn't get her to wake up.   Driving home, I cried a little.  It's starting to set in.  Mom's declining, her days are limited.

Already I miss my mom.  I miss shopping with her.  I miss fighting with her like we did when I was a teenager.  I miss her shaking a wooden spoon at me.  I miss her hugs.  I especially miss her making me soup when I don't feel well.   Today would be a day that Mom would have made me soup.

Thank God for Hospice.  Mom's end days will be more comfortable because of Hospice.  I am grateful.  The reality is, the end is coming for my mom, me and this extremely long journey down the road of Lewy Bodies Dementia.

Life Decisions

Who knew what it would mean to be my mom's Healthcare Proxy?  I sure didn't have any idea that over and over again I'd have to make a decision to either extend my mom's life or let nature take its course to her demise.

Lewy Bodies Dementia is cruel, a true slow death with peaks and valleys of good days and not so good ones.  One day Mom is alert and dancing, the next day she is agitated, confused and hallucinating about my dead brother.

"Eddie's here!  See him?!  Where are you going?  What time will you be home?" She asked my dead brother yesterday with closed eyes.  I don't know what she was seeing, but I can tell you, my brother was with her.  Ed's visits always calm her and make her feel that she's not alone.  Friendly hallucinations have become her comfort and help get her through her days.

Last week, my husband told me about an article that he had read about Defibrillators (read the American Journal of Nursing article here); patients who don't have them shut off will be repeatedly shocked, even after they die.  I can't imagine what it is like for someone in hospice, waiting for ones last breath to occur, heart ready to let go but the Defibrillator causes the demented senior to be shocked repeatedly in order to keep the heart beating.

The night I read this article, I didn't sleep all night, worrying if my mom had a Defibrillator or a Pacemaker.  I never really paid attention to the type of device she had implanted back in 2005.

I called the Pacemaker clinic first thing in the morning and left a message, "Hi, I read an article about Defibrillators and want to schedule an appointment to shut my mom's device off..."  I became choked up, I was literally giving the order to pull Mom's plug.  It sucked to do it but I had to, prolonging her life with a Lewy Bodies Dementia prognosis is not going to happen as long as I am alive.

The clinic returned my call and assured me that mom has a Pacemaker which does not give electric shocks and are not shut off; we will wait for Mom's battery to die.

Yesterday, while visiting my mom, she suddenly was running a high fever of 102.  She was shivering and shaking, eyes closed, hallucinating about all of her family both dead and alive.  She sort of knew that I was there with her, although I can't be sure she didn't think I was my sister Donna.

The life decisions for my mom that I need to make over and over again are emotionally difficult.  I keep reminding myself that my mom is suffering, trapped in her mind with a body that is declining.  Telling the nursing home not to do anything extraordinary to keep her alive is a challenge.  "Comfort measures only," is my repeated request while I dance with mom and wait for her final day on Earth to come.

It would be so much easier if my mom hadn't lost her mind and could communicate her wish about life or death herself.  It would be so much easier if she had a terminal illness like Cancer that would take her quickly.  The long and slow drawn out end of life that comes with Lewy Bodies Dementia is brutal for everyone.

Lewy Bodies has ripped my life apart.  Few family members in site; I get angry.  I have trouble understanding why my Mom and I were left alone to face this horrible illness.  I needed to understand so I formed my own conclusion to give myself some peace.  I am now of the belief that my family doesn't know what to do or say; heads in the sand like an ostrich is easier than facing the long and slow death of our Mom.  I often wonder if I too would be scarce if one of my siblings was caring for our mom instead of me.

I have learned something through this heartbreaking journey with no happy ending, it takes courage to drop ones ego and replace it with compassion.  Compassion for others is possible, it can be done... I am doing it.  Me!  The girl with the ego the size of Texas.

Bittersweet, I wait for my mom's end to finally arrive while I cherish her good days; days that make her life decisions much more challenging for me.

Boss: New TV Series Where the Protagonist Has Lewy Bodies

MUST SEE!

New TV Series on Starz beginning October 21st at 10PM.

Kelsey Grammer is a high powered Mayor who learns in the first episode that he has Lewy Bodies.  I watched the first 5 minutes of this episode and immediately began to cry.

Hearing the words, what it is and what potentially is coming for my mom, was difficult to hear even though I've been living the nightmare with her.

But...

People need to be aware of this illness; it could happen to any of us at any time.  I do have an opinion about how this illness should be treated based on my experiences with my mom.  There isn't a cure but I do believe there are natural remedies people can take to lessen the scary effects.  Food, exercise, acupuncture, hypnosis, Reiki and homeopathic remedies have worked well for my mom.  I highly recommend seeking out a Naturopath Doctor who understands how to use natural remedies.  The results we've had with my mom have been amazing.

This blog is dedicated to my journey with our personal journey with LBD...

Sorry... No Beds!

(Previous title of this post - "Nursing Home Placement Discrimination", I like the new title better.)

My head has been spinning this last week.

I've been waiting to move my mom out of the facility where she currently lives to one that I had thoroughly checked out.

I did my homework where nursing homes are concerned.  My husband and I have check lists, lists that we used to prioritized our choices for Mom's final living quarters.  It was a grueling process while caring for my mom at home.  

Who knows if I am the reason that mom isn't getting into facilities that we've been waiting for over a year and a half.  Every time I call, I'm told the same thing, "no beds."  Even when I've walked through facilities and saw empty beds, I was still told, "Sorry, no beds."

Last week, one of the facilities that we had been waiting on, set up a site visit to see my mom.  Mom was out with me when the nursing home arrived to "see" her.  Mom's day nurse told me that she gave my mom a good report.  She also told the nurse who arrived that I am very involved with mom's care, that I come and help out every day.  Mom's regular nurses like when I come because they have more time to help other residents.  One would think this was a good thing, family that pitched in, right?

WRONG!

I called the facility after they had "seen" my mom.  The admin person was nasty, her tone changed when she heard it was me and then said, "We don't have an appropriate bed."  

When I had called, I didn't know they had not seen my mother; I would have asked how they had made their decision.  Mom's nurse told me that my mom was out with me when the nurse arrived.

Not sure if I'm being paranoid or if my suspicions are true; nursing homes don't want family snooping around and causing their ratings to go down because of reported violations.

Makes me start to wonder about the damn rating system.  Have nursing facilities figured out how to circumvent the rating system by refusing potential residents who have involved families?  Involved families are encouraged to report neglect and abuse as indicated by signs posted around the home.  How else can it stop if we don't tell someone what we see?

I did think that it's because my mom has LBD and it's a difficult illness to manage.  Even the nursing facility that is supposedly very good with Lewy Bodies Dementia, keeps telling me that mom needs to wait 6 more months.  I've been waiting 6 more months for a year and a half.

Personally, I've come to the conclusion, nursing facilities with higher ratings on paper, may not be the best choice after all.  I can see the loop hole that the "so called good homes" use, discrimination that can not be proven.

No Problem.

I don't want my mom in a home where families are not welcomed.  

Today, I look at my mom's facility with new eyes.  Although the place where my mom lives has it's downfalls, they didn't discriminate against my mom and me.  The facility is willing to work with me to make life better for all the residents.  Albeit slow progress, I do see a light at the end of this long dark Care Giver road that I've been traveling for so many years.

If I had to do the exercise over again, to find a home for mom, I would not have waited as long as I did.  I would have talked to my mom years ago when she was more mentally with it and explain to her that she needed to move in to an assisted living facility.  

I have discovered that it's easier to get someone placed in a facility if they are not crazy with Lewy.  Lewy seems to be a big skull and cross bones, a label that scares the be-jesus out of facilities that know the face of this illness.  

Something has to be done to help Lewy Bodies sufferers and their primary Care Givers.  The system isn't working.  Could I be right?  Are nursing homes secretly discriminating against potential residents because of their illness and or their Care Givers?

Taking Rides From Strangers

Mom's Great Grandson
... looks a lot like dad.

It was March 1977 and I was 16.  I had two nephews, one was about a year old, the other was 3 years old.  I will always love my nephews, Joe and Drew.  We grew up together.

It's because of the boys that I had learned the responsibility tied to children; children are forever; not in my cards.  I am grateful for my nephews Joe and Drew for being a guidepost on my life's journey.  I love them.

Tonight, I was thinking of the seniors at the home where Mom lives.  I began to reminisce for all the old folks that left an impression on me... there were so many; most never told me their names.

One freezing cold day in March, I was babysitting for my nephews.  I was bored with their house and decided to hop the bus from the side of town where they lived to City Hall Square in Lynn where I lived.

I bundled the kids up as best that I knew how at age 16.  Andy (now Drew) was about a year old, barely walking and cute as a button. His massively big blue eyes got him lots of action figures when he was older.  Joe was 3 years old and my little buddy; Joe was my first 'real' doll who looked like a little cherub with his pudgy cheeks.

Waiting at the bus stop, it was freezing cold.  The wind was horrible and the kids were crying.  An old man pulled up to the bus stop and asked us if we wanted a rid.  He saw how cold it was and worried that we would freeze waiting for the bus.  It was wicked cold so I said, "OK."  My nephews and I hopped into this strangers car and he drove us to my home.

No problem.  No issue.  Just a sweet old man who helped me.  No wonder I love seniors.

My entire life, seniors have been my guardian angels... now, I get to pay it forward and become the guardian angel for a senior.

Isn't life grand?

Taking a ride from a stranger isn't always bad... it is more than likely dangerous and thinking about it now at the age of 51, it's freaking scary that I even did that with the kids.  I don't even know if my sister knows... well, she does now.

The lesson I hope to teach is sometimes it's OK to take a chance.

Lately, life at the nursing home feels like I'm taking a ride from a stranger...

Change Your Thoughts... Change Your Life

Mom and me at Whole Foods
September 2011

The collective mind of many individuals tends to either create or solve problems.  It takes one person to start any thought, birthing an idea that permeates other minds.

The mind is simple, emotions make it complicated.  

People are followers by nature, no one wants to be singled out and viewed as a freak.   It's why it's so easy for one negative person to spoil life for everyone.  It's easier to talk badly about ourselves than it is to build ourselves up.  I feel that fear of being different is the root cause to our personal flagellation.

Why follow when you can lead?

Based on my observations, a follower is someone with a low self-esteem.  Armed with a sour view of the world around them, folks wonder why their lives are miserable.  It's easy to fall into negative thinking, it seems to be everywhere.  Sadness prevails and more of the same is ushered into lives that are already stuck in a ditch.  

Being down and troubled clouds our thoughts, keeping us captive in a belief system that just doesn't work to bring us happiness.  Negativity is everywhere and it's our choice to either bath in it or take a daily emotional shower.

Visiting Mom's home, I have observed the behaviors of all the employees from the top down.  Like an ocean tide, the emotions of one will suck in everyone in it's path; negative and positive.  Knowing what I know about the mind and how to create my own personal happiness when the world around me seems to be crumbling; I find it painful to watch.

Initially, I too was sucked in to the madness of the wild emotions that fly around Mom's home.  I found myself sad every single day; crying... again!  I began asking myself how having my mom in a facility was good if I was crying every day and beginning to get physically sick again?

I had to do something to change how I was feeling.  I began to use self-hypnosis on myself.  It works.  I know how to change my mood.  I know how to make myself happy, after all only I can make myself happy.

I began practicing a simple technique that I had learned while studying hypnosis.  Each morning, I throw the bed covers off as I jump out of bed and exclaimed to the world around me, "Today WILL BE A GREAT DAY!"

The mind is suggestible.  Whatever we hear, whatever we hear ourselves say repeatedly, our subconscious mind hears. It's the basic principle behind why bad things seem to happen to good people.   I believe in the subconscious mind.  I believe that I hold the power within myself to change my circumstances in life.  You do too.

My belief comes from my personal experiences using this simple self-hypnosis technique; using one's voice to create the belief that transforms your life into a paradise.  It's possible, even when the proverbial poo is hitting the fan.

I could explain in detail how this works but instead, I'm going to show you HOW to do the simple self hypnosis technique, so that you can experience the explanation.

It takes strong emotion and feeling to help manifest a thought into reality.  That's why it's so easy to manifest crap in our life.  When we worry about something with strong emotion and feeling, when we fuel the idea with thought; we are creating the very thing we want to avoid.

Think about the stuff you are worrying about right now?  Is it helping to make your life any better or is your greatest fear manifesting?

My personal example:

My greatest fear in life was putting my mom in a nursing home.  I worried for decades about the day that I would need to take her to the place where she'd probably die.  I thought of all the guilt trips that she had inadvertently placed on me.

You see, Mom worried about the crazy gene, the inherited gene that seemed to make everyone in her immediate family, nuts.  Mom worried so much that she gave me her worry, her fear was implanted in my impressionable mind.  The result?  I became my mom's Care Giver and worried about nursing home placement.

My thoughts became obsessive with worry as she became more ill; strong emotion and feeling made my worst nightmare become my new reality.  I cried.  I sobbed.  I created my own misery with the thoughts that I had chosen to hold.

I knew how to solve my problem.  

I was burned out, I couldn't get myself out of my own personal hell.    Something had to change...

I chose to change myself.

I took slow deep breaths.  I practiced breathing again and was conscious not to take shallow breaths.  I filled my lungs with as much air as I could hold.  It felt good to expand my chest cavity with fresh oxygen.  My thoughts began to calm.  I began repeating positive affirmations that created a good feeling within.  I felt like I was coming home.

EVERYTHING IS GOING MY WAY!

I repeated this phrase out loud and with strong feeling.  I am passionate with my belief in this phrase.  Every day on my drive to visit my mom at the nursing home, I drive and repeat my affirmation.  On days when I'm feeling a bit blue, I have to make an effort to do this exercise.

Something amazing happens ... everything begins to go my way.  It feels good.

EVERYTHING IS GOING MY WAY!!!

It works.  Try it.  Believe in the power within YOU and YOU can transform your life.  Happiness is looking for you.  Change your thoughts and you will change your life in so many ways and on so many levels.  Repeating positive affirmations will keep your thoughts from drifting into the weeds.  You deserve to be happy, everyone does.

Visiting the Nut House

Dr. Clown

It's never easy to visit the Nut House, people screaming and attempting to communicate; sounds that blend together like it's own symphony of insanity.  On the surface, it is down right frightening to enter the Unit where my mom lives.

Why do I go everyday?

Over the hundreds of hours that I have spent at the nursing home since my mom has been admitted, I've gotten to know my mom's friends.  I have a few favorites; they've got personality even in their demented state of mind.

The most rewarding aspect of visiting the Nursing Home is seeing the folks smile.  My mom is usually happy to see me.  Occasionally, she is pissed off and declares her disdain for me.

Recently, I spent the entire day with her, took her out for a drive, bought her a coffee and had a few good laughs. Only later did I get reprimanded for not being with her; she believed she was with my sister Ann.  I can't win with my mom, she redirects her anger meant for my siblings, toward me.

Mom feels better thinking that she's not been abandoned by her children.  I'm glad I can fill the void.  I fill the void for a lot of the residents.  It gives them better days and keeps the Nut House a bit more peaceful.

I love the Nut House, I love all the residents and seeing their smiling faces.  It's easy to make a difference in someone's life.  I am on a mission to teach the world how to embrace a senior.  A little goes a long way in the Nut House!