Being a Caregiver can be a Bitch


Oh my God! I instantly get pissed off when I read crap about caregiver abuse.

I posted an article about a family member and the caregiver abuse that was involved. How can people do this?

I know from my own personal experience; being a caregiver for a patient can be very stressful. It’s even worse for a family member to be the primary caregiver.

Caregivers have to watch the illness take over the life and watch to the very end; which many times ends up in a sad situation.

Family caregivers fight with various emotions. They are watching their loved one become less than the person they knew.
Many times there isn’t enough relief and the hours turn into many long and lonely hours.
Sometimes caregivers fight the memories. Why didn’t they do more, say more syndrome?
Then there is the background noise. People suddenly start claiming property or trinkets as if the patient was already deceased.

Thoughts have to eventually turn to the future. Questions roaming in the mind can often be; how will I make it? Why didn’t we prepare burial insurance? Will I have to sell the house? I can’t keep doing this forever; I have a job!

So many questions, so much emotion, and yet we continue to move through the days. Why? Because we genuinely care about the patient or they are our spouse and we love them.

My brother, Al, was no easy piece of cake to take care of. He was mentally challenged in his thinking, especially. Having Multiple System Atrophy and Parkinson’s, kept him even slower with his thinking.

Various times I was screamed at, threatened, verbally abused, and there were even a few times I was hit by him. Sure, the normal part of me said, FORGET THIS CRAP!!!! I DON’T HAVE TO DEAL WITH THIS.

That thought entered my mind. For God’s sake; I am human, but the love I felt for my brother; kept me going on for those seven years. I was blessed with, from God, to be a caregiver.

I actually loved and still love taking care of people who need help, but let’s face it, every day isn’t a picnic. Next month will be four years since I lost my brother to MSA. I wouldn’t change a darn thing I did. I know I did a good job. Well there is my little part of patting myself on the back; if you wish to see it that way.

The point I am trying to make is; not everyone is born to be a caregiver. Some can’t face watching the patient decline. Then there are those who seem to have the gift. They put their heart and soul into it, and care about nothing more than giving good care and comfort.

If you find you can’t care for a person. Don’t continue to do so out of guilt. Bad things happen from guilt. Examples, anger builds, neglect can happen and so many other things.

Except you are not the person to be performing this type of work.. Look at alternatives. Ask for help. Seek Respite care, family members, nursing homes, elderly attorneys. Do what is right for you and the patient.

When I read about caregivers who abuse and neglect their patients, I try to understand how it happened, but the fact is; it happened.

Thank-you for letting me get this off my chest.

Terry Shepherd
A former caregiver for many years
Now dealing with Parkinsonism/ Ataxia/ Dystonia

#MSA#Parkinsons #Caregivers#Patientcare

 

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We Shall Never Give Up!!


The weekend is over, but is it really? I know, you are going to bed early, getting up and going to your job. Kids are going to school. Routine, routine; but for some of us, the weekend is no different from a week day.

Some of us struggle daily with walking, sitting, standing, talking, choking, swallowing, exhaustion, infections, diseases, receiving enough help.

We don’t get a day off. Tell you what. I bet there are many like me who feel and hate having to get help from the government or programs offered for the sick and disabled.

I will tell you another thing. Most of us who remain at home, once had jobs. We raised children and families. We did that routine from Monday-Friday. For me, most of my working hours came on the weekends or evenings.

Last thing I want to say is; I will trade you any day. I will work your job, your routine, and you take my position and do it 24/7.

Support and help fight for Multiple System Atrophy, Parkinson’s, Ataxia and any other disability or illness that keeps us from doing what once was our routine.

Thank-you,
Terry Shepherd

 

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Each Day We Must be Positive


I wish every day was like today. I had so much energy; I felt like my old self. I rearranged my living room, watered my plants, cleaned the hamster cage and swept. I admit, tonight I have some sore muscles, but I do know what it is from; today.

What is the magic ingredient I added today to be so active? If I only knew, I could cure everyone. I have no idea. I will have to just be thankful for a good day.

Tomorrow after six long months, I go to the dentist for my final fitting of my false teeth on the bottoms. I spent last year doing the same with the uppers. I will be glad it will be finally over.

For three hours tomorrow I will have no bottom teeth, while the dentist makes that final fitting with a much lighter-fitting plate. I should like that. To be quite honest, I hate both of them. The set still feels like I have something too big in my mouth, but my original teeth were bad. Every time I ate, I had to use floss to pick out every fiber of food or I would be in so much pain.

The gums had been receding for some time and the roots were starting to show. I am thankful for no pain any longer. The most embarrassing thing I endure from these babies, is biting into a sandwich. The  uppers begin to slip and I have to form my muscles around them and hold them in place. ( I can’t stand the gummy stuff to hold dentures in, I gag) Pain in my rear, but better than eating liquids the rest of my life.

Friday, I go to my brother’s neurologist and hopefully, I will be told I do not have MSA; just Parkinson’s. The neuro is very smart about MSA and would you believe he examined my brother once and diagnosed him with MSA?

Multiple System Atrophy is a rare disease that is neurological. It breaks all ties during the illness of nerves going from the brain to action. Eventually you end up with a frozen shell, who is very much alive inside. There is no cure. The life span is an average of seven years.

I teach Hospice groups about MSA and I am an advocate for the disease. On my Facebook page, I am very active with caregivers, patients and families. I so wish I could do more, but at this point I don’t know what. I would give my left arm to be able to afford to go to one of the National meetings MSA holds within the U.S., but it takes money to get there and money to spend the night.  My biggest hope ever is to meet a woman is has this disease, but carries herself high and has been a close friend of mine ever since my brother began his journey with MSA. Her name is Bonnie. I want to meet her so bad. She is from Canada, but does make trips here to the U.S.A. Perhaps someday, my dream will become a reality.

My Gift From God

When we wish upon that star

And we think with all our might

We hope that God or angels

Grant our wish tonight.

 

There is so much to achieve

For me upon this earth

I believe with all my heart

This is my gift since birth.

 

I am poor as poor can be

But helping others dream

Makes me the richest of all man-kind

I actually burst from inner seams.

 

A kind word I can lend

A question answered too

Helps others have less fear

It’s what I’m here to do.

Written by,

Terry Shepherd

MSA (Multiple System Atrophy)


MSA. (Multiple System Atrophy)

You have taken many people
To the heavenly steeple.

Here on earth we ask
For only one task
.
For you, almighty one
God, Jesus, your son.

Who is the miracle king
Let freedom ring.

Hear us sing
Provide the key.

For them and me.
Heal this disease..

We shall get on bended knee
And praises will go to thee.

Thank you for your gift
Amen.

Written by,
Terry Shepherd

 

Hello Dear Brother


Hello Dear Brother

I ride your scooter, you probably know
I use the walker, like you did bro.
I have a cane as you did too
Sometimes dear brother, I see me in you
You had an illness called MSA
Maybe I have it, some docs say
I have your Parkinson’s, no doubt of that
I tend to fall just like your past
People say this can’t be passed on to me
But my symptoms are very hard to flee
If you hadn’t gone to heaven so soon
We could share these scenes without the doom
I’m going to see your neurologist
The one who gave the song of bliss
He’ll ask me questions that he asked you
I’ll remember your answers that rang so true
I sometimes feel better because I know
You’re walking with me, every step I go
I feel so close to you these days
Because I resemble your MSA ways.
I love you brother, stay near me now
Because it is possible I’ll have to take that vow
To keep strong, and hold onto my faith
Just the way I made you when you paved your way
I’ll ask our God to guide me through
Just like the way I prayed for you.
And if the day comes I have to leave
Keep your promise and save a seat for me.

Written by,
Terry Shepherd

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When You Believe


When You Believe

When you believe
There is nothing left
When life has you down
Turn your ears to deaf.

Don’t listen to downers
Keep hope within your heart
Force a smile on your face
Tell Satan to depart.

Yes, what we have is real
We can’t pretend it’s not
When it comes right down to it
Faith is all we got.

Each morning ask for strength
Each night say your nightly prayers
For God is right there with you
In fact; he’s everywhere.

So straighten up and listen
We got this; you hear?
We’ll lick this; you and me
We will not live in fear.

Written by,
Terry Shepherd

 

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If You Have an Illness


So, you went to the doctor
You received the word
Now what ya gonna do
Shrivel up like a bird?

Hell no, you won’t
You can’t do that
You got to pull your panties up
And put on your hat.

You will get involved
You will tell all
You will do all you can
You will stand TALL.

You will have moments
Where tears will fall
Then you will dry tears
And stand for all.

You will eat right
Exercise too
Follow doc’s rules
Using all tools.

And if in the end
You meet heaven’s doors
You have left behind
People to fight this war.

Written by,
Terry Shepherd

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Say It Isn’t So


Say it isn’t so
This isn’t in the plan
I worked hard my entire life
I did all without a hand.

The doctor said it’s true
The test, he showed to me
I hid my head and heart
Fell down on bended knee.

Oh God, what did you do to me?
Didn’t I do what you asked each day?
How could you let this happen
How could you make me pay?

“My child, I didn’t place hand in this.
This comes from other than me.
I don’t give anything but my love
There is no price to pay.”

“I promise I will stay
I won’t let you walk alone
I will light the path before you
I will shine where you have shone.”

Sometimes bad things really happen
To those we love so dear
We must place our faith in God
Whom we trust and love so dear.

Written by,
Terry Shepherd

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The Time is Near


It is the third month
The days are creeping up
Closer the calendar moves
I remember like it was yesterday
Your smile, your tears, your silence.
Brother dear, I know you left me a penny
I found it on the floor
You probably see that I am wearing your IU jacket too
It is one way I can feel close to you.
I miss you baby brother
There will never be another
With big blue eyes
The color of skies
A grin so wide
No where to hide
I saw the questions you had
When you felt so bad
I couldn’t keep it away
MSA took you that day
March 24, 2014
It was a disease so mean
No matter what I try
I still cry
I miss you brother
There will be no other.
 
Written by your sister for you my dear brother,
Terry Sheperd
In memory of a warrior of Multiple System Atrophy

My Brother’s Flower


My brother has been gone for over two years. In fact, it will be three years next March. Still seems like yesterday, at times. I have shared plants and flowers that were at his funeral. I now have one.

This Lily has really fought hard to die this entire year. After giving it a new place to sit and the perfect soil conditions, I sometimes think it is trying to tell me, I am tired, I want to die. Just remember what joy I have given you thus far.

Well it is for that reason alone, I fight back. Once again, I will win, even if for a short season. You see, I am like so many others who have lost loved ones. Thanksgiving and Christmas are coming and the dreadful thoughts of my brother not being here weigh heavy on my heart.

So I believe with all my heart, Alvin lets me know he is happy and thinking about me too. I receive his gift of one bloom on his plant. It is the same time each year. Thank-you brother. I love you too.

 

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