A Hidden Road, Being A Caregiver


indiana sayingDo we really know our hearts? Do you or I have an inkling of who we are and how detailed we are made? We are magnificent creatures.

Each of us, having been designed with some hidden talent, just waiting to show the world. I was one of those for years that didn’t know I had a talent. I was brought up to never praise myself in front of others; to do this would be considered bragging.

I was not aware that some talents do not involve actors on TV or singers or playing the piano. It took Word Press for me to finally get it through my head that my hidden talent was caring.

Sounds pretty dull doesn’t it? It doesn’t get bring me stardom, so I will never be rich from it. No one notices outside of those who know who I am. But caring for others replaces the “Me” thought and places it on he or she.

I used to think over twenty years ago that being a caregiver was a piece of cake. I wasn’t in a factory. I wasn’t outdoors in the freezing weather climbing poles. I was inside a warm house, sharing meals and conversation with strangers.

Strangers is such a short-lived phrase. It doesn’t take long at all when you sit and listen to the patient talk that you are drawn into their earlier life. You learn to feel their dreams, and cry with their regrets of growing old and dying.

Yet not everyone can be a caregiver. It is one of those jobs that you best not take it if you are doing it only for the money. Care givers work from the heart for the most part. The physical load I carry is much less than the broken heart watching someone you love or respect or maybe both get worse and die.

Once I discovered the hidden path that makes up me, Terry, I was more content. I was never ashamed again to speak up and admit I am a caregiver, not “just” a caregiver. It is a proud position and I thank God that he chose me to do this type of work for him. When he made me, he put all the right ingredients and he knew I would not fail him.

I have taken care of strangers and I have taken care of family. Of course family is the most difficult by far. More love and emotions, strings attached from years gone by are naturally attached.

Now I deal with Multiple System Atrophy. There are days I cry. There are times I wish it was over. There are moments where I am beat and just want to sleep, but I always go back to the patient, who for me now is my brother, and I look at how brave, a real warrior, he is.

For I have only sat on the side lines and looked through the window and tried my best to understand how he feels. How can I possibly do that? I don’t have this terrible disease. He is the great and mighty fighter. He has fought greater wars than I have my entire life.

Each day when I hear his breathing as he struggles to get in that wheelchair  one more time I feel his will to live. Each day as I see him with fork or spoon in mid-air, and realize that inside he is telling his hand to continue to move towards the mouth, I weep.

The brain is not affected with M.S.A. Al remembers very well that he didn’t used to wet his pants. He remembers driving and working. He remembers having time to himself doing the things he enjoys.

Every second he is awake he is never alone. How humiliating it must be to have your own sister bathing you, changing you, feeding you, but he never says a word. I will ask him if he is enjoying his bath and he will say yes but then begin to cry.

M.S.A. sucks and any of us that are affiliated with it know this. But for my brother, he is a warrior, and for me, I have discovered that hidden road, that secret that was kept silent for so long; until I started to blog

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The Gift


As you all know because I have crammed it down your throats yesterday, today is National Multiple System Atrophy. There have been so many comments on my Face Book page that I haven’t been able to blog. Believe me I am not complaining. People have lit hundreds of candles in his name. Some have donated in his name. Others have worn purple as I still am today.

I was going through my comments and found this precious gift for my brother and I wanted to share with all of you. None of you have met my brother, but I believe in my heart you know him very well.

Dianne Cogar I see that man Al use to be
There in his eyes still strong and free

Though his heart yearns for better days
He knows deep down this is no phase

He fights through tears, through aches, and pain
And hides them well as his strength wanes

He knows too well what lies ahead
Though it is certain he has no dread

For in his heart I’m sure he knows
That as time passes his purpose grows

For from his experience, his loss and win
Those in the future will profit in

And in Al’s name there will come a time
When his legacy will be the sign

That those like him will face less dread
For answers will reach them just ahead

And in their hearts will always be
The man who brought the world to see

For Al’s a fighter, a leader, and more
A man with purpose we all adore

Without a doubt his heart stays sure
One day they’ll find the perfect cure

 

Here is the correct and easy route to the M.S.A. page if you want to light a candle for Al today.

http://www.msaawareness.org/

 

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Dedicated To My Friend Dianne Cogar


This past week I have been reading more of Dianne’s  poetry than ever before. Why, you ask? Because she writes about life. She writes about people. She writes from her heart and soul the same as I.

I have been lucky enough to have chatted with her over the phone and I am glad that I can call her one of my friends. She knows that I care for Al. She has also done this in her own family, been the head caregiver. She along with anyone who has taken care of elderly, disabled, or anything that others would consider out of the normal, know how tedious and    butterflies 2tiring this job can be.

She also realized as you do that I pretty much go it alone. The Hospice number is always at hand for me, and I greatly appreciate this as I am treading some new waters I have not waded in before.

I stress over things that haven’t happened and you can call me one silly worry wart. I do because of caring for my brother and my father. I can’t  help but  wonder what will happen to me. I know I have said this before, but it weighs on my mind. No one wants to lose their memory. No one wants to become ill.

No one wants to end up as  a stranger to their family. No one wants to die alone. Dianne has been writing poetry for years and this past week she has touched base on the caring for parents.

I was rummaging through U Tube waiting to give my brother his medications and bed time snack when I came across this video. It ripped at my heart as I could relate in so many patients I have cared for.

I don’t care how young you are. Some day you are going to forget things. You are going to wrinkle. You are going to get old no matter how much you exercise or  pay to look young. And I can promise you that one day, you will die.

I guess what I am getting at is- take a moment. Look around in your busy life. Do you have grandparents that are lonely? Do you have an aunt or uncle, brother or sister who is disabled? Do you know someone in your corner of life that is all alone.

My saying I have had for 23 years as a caregiver is “ treat everyone like you want to be treated when you become old. Don’t forget the elderly and the disabled.”

Take a look at this video. It is in a foreign language but read the bottom, it is in English. If you have seen it before, watch it again. If you have never seen it, watch it and then take mental notes.

Thank-you Dianne Cogar so much for coming into my life at the time you did. It was meant to happen. You, my friends can find Dianne on Facebook. She writes for Blue Mountains Art Backyard. She has had her poetry published and I am always astounded at what comes out of her mind onto white pages.

Here is the video.

http://youtu.be/N6_583_o54U

Daily Prompt; Viral


http://dailypost.wordpress.com, DP, Daily Prompt

The New York Times is going to feature your blog on its home page, and you’ve been asked to publish a new post — it’ll be the first thing tens of thousands of new readers see. Write it.

Photographers, artists, poets: show us FIRST.

Hi, my name is Terry. I started writing because God told me too. Before I started writing I spent many hours in elderly people‘s homes caring for them. Sometimes staying for days upon end at a time.

During the time I worked outside the home I was also caring for my Father who had Myeloma. http://www.lls.org/diseaseinformation/myeloma/

Somewhere along my journey in life I started questioning life. I wanted to know what my place was here on earth. What was my talent that God hath given to me. I would glance back at where I had been and once I became better at this I could see pretty much where God was leading me.

Today I would call myself a Professional Caregiver without the Nursing license behind it. Working with disabled children and adults, geriatric and Hospice patients I learned a lot. I can handle the care of a G-tube. I can use an aspirator. I can give medications and shots. I can take your temperature under the tongue, under the arm, or even in the you know where.

I can sit with you while you are sad. I can read you your favorite books. I can read Bible stories to you. I can cry with you and hold your hand in mine. I can place a cool cloth on your forehead. I can sit up, lay you down, change your briefs, take you for a ride or a walk. I can be your best friend. You can count on me to not tell any of your deepest secrets or your worst fears.

I will promise you that you will not die alone. I will be right beside you until your last breath happens. I can file your insurance papers. I can call in your refills, or make doctor appointments for you. I can clean and tidy your house, sorry but no window washing from this gal.

I can do your laundry, cook your meals, and fatten you up with home-made sweet treats. Yes, God has been good to me. He blessed me with a  heart full of love and compassion.

I have to admit not everyone sees me this way. It takes a special person to recognize this type of soul. I have been told I can be cold, bitchy, whiny and nagging. But most of the time I do act in that manner it is out of frustration. For having explained how I feel over and over and the one listening still not getting my point. I do tend to become a little edgy by then.

When you are ill, you listen. You crave for a voice, you desire someone to care. This I can offer.

So when you read my blog New York people, you will know that each and every word written is the truth and nothing but the truth. My blog will always be written from my heart and soul and I will always be speaking directly to you. Why, you ask? Because, this is my talent from God and when God makes people, he does it right.

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Daily Prompt; Life After Blogs


http://dailypost.wordpress.com, DP,  Daily Prompt

Your life without a computer: what does it look like?

Photographers, artists, poets: show us WITHOUT.

I wasn’t one of the first ones to get the new gadget called the computer. I went quite a while before testing it out. First I started with the Web TV. I am not sure if that is still around. Then I bought a second-hand computer, which I learned on but it was very slow, due to it coming with its own set of viruses.

For me, I thought  life was more exciting without the computer. I went outside more. I enjoyed nature, and walks and went to friends houses. I went window shopping and second-hand store shopping.

Through a nasty marriage and finally a divorce I bought my very own first computer. I had it built for my preferences. But what I didn’t know was my future and how important of a play my computer would play in it.

At the time when I got my computer I didn’t spend a lot of time becoming best friends with it as I was taking care of my Dad full-time and had a 40 plus hour a week caring for other patients.

When I wasn’t working I was cleaning house or grocery shopping. One day a week you could find me at the local laundry area chatting a way to strangers waiting for the machines to do their thing.

On free moments I tinkered with my computer. After Dad died, I dug more into the computer to comfort my broken heart. I visited chat rooms which I found to be perverted and a big waste of time. I started doing research on my hobby, slavery. I learned about internet games. I had fun.

I still didn’t spend a lot of time on it. I managed to walk several days a week on one of the hand-made walking trails. I loved raking leaves and sitting by the lake. I adored watching kids play on the playground at the beach.IMG_0253IMG_0273

I loved watching kids swim and laughing. It reminded me of my own youthful days.IMG_0270IMG_0231diving boydiving

But the time came when Al got sick. I was bored with playing games online. The chat rooms I had removed and I was down to a little of this and a little of that.

When I prayed for months to feel useful God turned my computer in to a  healing machine for me. Without having to face people face to face I was able to freely express my feelings.face2face I have been on a healing path that has helped me sort out my life. Although my parents are no longer here I have been able to understand a little easier what kind of family I lived in. I understood why Mom was so tired. I understood why Al is the way he is today.

God has helped me and I have been led by God to help others. He had a perfect plan and used my life to help another soul that I have never met.

If I didn’t have my computer I may not be able to reach out so easily to those needing a shoulder to lean on. Maybe I would go back outside and walk the streets professing my love for him.

Maybe I would go to the park and swing allowing my child to rise once again. Walking could be placed back in the picture. I don’t know, but I do know that I am doing what God wants me to do. I have grown through blogging. I have been able to take the stale band-aides off and let Jesus heal the wounds.

When the time comes and my life is no longer being a caregiver, I will look to God once more for the direction of where he wants me to travel. Who knows, maybe he will lead me to your city.

Sisters Aren’t Perfect Either


I don’t know why I have to be a perfectionist. There is no such thing as one, but I have always tried ever since I can think back to around eleven years of age. I think it stemmed in the beginning from always trying to please my parents.

If I cleaned house good enough they would acknowledge me. If I got good grades they would say something. If and if and if. It doesn’t work. It didn’t work in my younger ages, it didn’t work in my  marriage and it doesn’t work with Al.

But yet I keep trying. I still have my house as clean as possible. Don’t get me wrong. I still don’t do outside windows. I only clean walls and closets in the Spring and Fall, so I am not terribly bad, just bad enough.

It took me all morning to get over the incident with Al and the shower. I even had to lay down and take a nap because the whole incident wiped me out of energy. Finally I got it together as good as I do, and I read all the comments and sucked  in my sponge brain what they said.

I guess with Al the real issue is losing him. Not losing him to death, but losing him to the system. Those words from the hospital saying they were going to have to report his falls, even though they knew why he was falling still haunt me.

What if I make a mistake.What if I speak too loudly. Brother-and-Sister What if I accidentally hurt him or let him fall or anything? Abuse is a big deal into day’s world. Everyone has to prove they are innocent. I don’t want to ever have to go through that because deep down inside I know I am the best sister ever to Al. I love him with all my heart.

I need to learn that I am alright. I am doing a good job with him. I need to realize I can never make him truly happy and I can’t do everything he wishes. He is a sick man living or trying to live as if he is not ill.

I worried about what the bath aide thought as she observed the scene, but then I thought to myself, nothing happened. She just made me feel as if I didn’t do things right. Her telling me I should have sat him back down and explained was her thoughts. I didn’t do anything wrong, I just didn’t think of her idea.

After I woke up I went to the store and bought one more safety guard for the bathroom and a bath mat. There is nothing else I can do as far as the bathroom goes. I have done all that I can think of. There are now three bars in that little room, a bath mat, new lighting so we can all see better, a good bath aide and a loving sister. Anything else that is needed is up to God and Al.