If I am content then why oh why
Is everything I am doing for him
Eating me just under my skin
Forcing me to keep my eye lids dry.
The whole weekend long
He cried and cried
No matter what I tried
He is still wishing he would die.
I know I can’t give…
If I am content then why oh why
Is everything I am doing for him
Eating me just under my skin
Forcing me to keep my eye lids dry.
The whole weekend long
He cried and cried
No matter what I tried
He is still wishing he would die.
I know I can’t give him what he used to do
It is only me and he takes the work of two
I realize his Day Program lights his life
But here at home it’s nothing but strife.
When he needed to go the number 2
I gave him his time to do the do
But when I went back to check on him
My face turned sour and I felt so grim.
He had decided to help himself
The evidence was clear from the towel on the shelf
Mess was on his skin and clothes
I felt like I needed to use the power hose.
I talked to him about how this ain’t cool
The germs he can pick up, a nasty tool
Of course he cried and I shut up
I cleaned him up and tears filled my cup.
I love my brother but I hate this disease
I can’t take it out on him even though I please
It isn’t his fault that his days are not
The way he remembers is all he’s got.
A sister, a caregiver is who I am
Doing what I need to do for him
So why am I kicking my butt all around
Causing myself grief, landing on the ground.
I pray for this to go a way
I can’t afford to feel this for today
I have no choice but to go to God
For I am not perfect, I am greatly flawed.
Written by,
Terry Shepherd
08/04/2013
What Others Say Can Harm You
Bay to Breakers “AmBEERlance”. A kegger a day keeps the pain away. (Photo credit: Wikipedia)
Today…
Bay to Breakers “AmBEERlance”. A kegger a day keeps the pain away. (Photo credit: Wikipedia)
Today I went to see Al. He was listening to his coca cola bottle radio with his headphones. He was in a pretty good mood. When it came time to take him potty before lunch he all of a sudden got bad leg pains. He started to whimper and I observed the one absolutely fabulous aide took her time with him. They accomplished the deed and he was to push himself out of his room and head down to lunch.
He was still whimpering from the pain so he stopped at the Nurse Station and asked for a pain pill. A nurse, over the weekend informed me that Al had not been requesting PRN pain medications for some time. I was happy to hear that the new increase of his pain patch was still working.
While waiting for the nurse to give him his medication I made a comment that I was so pleased that Al had not been asking for more pills. She got in his file and said,”Who told you that?”
“Rachel”
“Well it says right here he asked for PRN medications on the average of one to two times each day.”
She began telling me the times and days. Once again I had been duped by that stupid Nurse. I am sorry, I shouldn’t call her that, but I can’t help it.
Al was fine while we were at lunch. He was cutting up and smiling. He is usually in a good mood on Tuesdays as he gets to get out of there for the afternoon. His driver takes him to an outing or to the Day Program.
The driver arrived and when Al was trying to release the manual brakes of his wheelchair, he wasn’t strong enough. He started to whimper and feel embarrassed. I hated myself at that moment, because I started to freak.
We were in front of everyone. Here he was jabbering on and on how he was stupid and couldn’t make the wheelchair go. I tried to reason with him and explain about taking the chance of getting too upset and being placed back in isolation.
He wasn’t listening to me. He was too into what he could not do. I took him down to his room and washed his hands and face from lunch. I was still using different tactics to calm him down. His tremors were as busy as a bee. He was teary eyed all the way to the front door.
The problem here is what the facility has done to my emotions over this past weekend. I don’t like freaking out because Al doesn’t like it that he can’t do things he used to. The plain old truth is that because he is out of the lock down room, his PD is still very active.
He isn’t going to feel any better physically. I am just trying to gear his mind to other places, but in the end, the facility has made me feel very vulnerable. Are they going to put him back in isolation? Is he going to say he wants to die again? I am worried. I don’t want him to have to go back there or be kicked out.
I kicked myself all the way out the front door. I watched him being loaded and as I left in my car I prayed he settled down. I have to stop being afraid, but I don’t know how. I am not afraid for me or to speak up to this rotten place, I am afraid for Al.
A cry could be heard. ” Help me, please somebody help me.” A man who had been secretly living in the woods heard the echos of the voice. Stamping out his small fire he raced to the voice’s direction.
The man knew he would be trespassing but he had to help. He opened the barn door wide. His eyes adjusting to the dark inside. Yellow eyes turned in his direction. Fear took over the stranger. Urine ran down his pant legs as he saw the size of the beast.
In the corner standing on several stacks of hay was a young boy. Guessing to be around the age of ten he looked much smaller than the wild beast who had decided he was hungry.
The animal turned a way from the stranger. The size of the two humans was an easy quest to be decided. Smaller was better. He lunged at the boy and missed his mark as the target moved one more stack up.
The stranger picked up a shovel and charged the animal trying to hit him hard enough to knock him out. He got within inches when the beast turned and clawed him slapping him to the ground. The man rolled over a few times and bumped his head on something hard.
Turning back to his prey the creature honed in and leaped to the spot where the boy was huddled. With open jaws he managed to chomp down on an arm and dragged him to the ground.
The trespasser woke and saw what was happening. He had nothing to use. There was nothing to protect him in sight. He once again charged at the animal. He landed on top of the wild animal. He rode him digging his legs into the creature’s side.
The beast released his jaws on the boy and rolled his neck back. He saw his enemy and tossed him but the man clung tight. The two struggled in the hay strewn over the barn floor. Each fighting for their lives. There was no thought of the young boy any longer. It was man against beast.
The growls from the animal stirred a commotion among the barn animals. The lone sleeper in the house was awakened. Pa grabbing his boots and coat grabbed his gun. Racing to the barn just as the boy was climbing down the hay a gun shot was heard.
The noise startled the animal and he took off running out the doors. Pa had meant to kill the beast but at the second he pulled the trigger his son was running to him. He fell to the ground crying,” Papa, Papa it hurts.”
Papa ran to him throwing his rifle down. He picked up his son in his arms and gently rocked him back and forth. As he glanced in the direction of the strange man he tried to sooth his son by saying,”It’s going to be alright son. Oh God, I am so sorry son. I didn’t mean to hurt you”.
Please Almighty God let my son live. I didn’t mean to shoot him. It was an accident. Oh God help me.
The stranger lay in the spot the beast left him. Too weak to stand. Blood seeping from puncture wounds. Inside he was praying also, and cursing himself that he could do nothing but lay here and watch.
The sobbing from the young boys body became quiet. His boy lay lifeless as he died in his Papa’s arms. The stranger closed his eyes trying to keep tears in but they found their way and were running down his cheeks.
Papa grabbed his boy and hugged him tighter. ” I am so sorry son, I am so sorry. God, you didn’t listen to me. You ignored me. What kind of God are you that you would let an innocent child die? Where were you when I called out to you? Why, why did you ignore me? he sobbed into the rafters.
He held his son close to him kissing his forehead. He ran his fingers through his hair. Tears pouring out of his eyes he finally admitted defeat and lay him down on the hay. He curled himself in a ball and sobbed for his child.
How can I ever forgive myself for this? What have I done to my son? I can’t live with this. Where were you God when I needed you?
The stranger tried to move and was able to edge his way closer to the son’s papa. Pain was running through his body and he heard his own moans coming from his throat. Still he continued to move closer to the grieving man.
Something inside of the father stirred him to move. He sat up with blank eyes . A look of anguish plastered over his face.
Papa stood up and picked up his son. He walked out of the barn and laid the boy in the soft blades of grass. He walked back into the barn and grabbed a horse blanket. He placed it over his son.
He then walked to the stranger and knelt down.” Are you going to be alright? Are you hurt bad? I can see the blood coming from you leg. I will go in the house and call a doctor to get you some help.”
He reached for another blanket and covered the stranger. He walked towards the house and disappeared behind the front door. The stranger laid there moving his arms and legs. Checking out his damages. He knew he was going to be alright as long as he got help.
He laid there going over in his mind all that had just happened. He drifted in and out of sleep his body adjusting to the pain. Soon a shadow over came him and he opened his eyes to look into the doctor’s face.
The doctor was able to clean him up enough so that he could be taken in the car to his office. He walked outside and picked up the dead child and placed him inside the back seat of his car.
” Don’t you think we should let the father know we are leaving? I am sure he will want to come along for his son.”
” No, there is no need. I have already called for an ambulance. I knocked at the front door several times but no one answered. I looked through the window and saw a body on the floor. I went inside to find he had taken his own life. I think we should get you to a doctor.”
The doctor drove his car from the barn to the house. He carried the son’s body inside and laid it next to his Papa. Carefully covering both bodies he walked back to his car. The ambulance pulled up and the doctor motioned towards the open door. He then got in his car and drove towards his office to stitch up this man.
It’s getting to the place that I have few I can trust. You are thinking gee, what happened to her?
It is just no matter who I talk to anymore whether it is about car tire pressure, or car lots selling cars or even professionals their words are not quite the same as the next persons.
I trust each of my friends here at WP. I trust my very best friend. I trust God.
Are you thinking,what has brought this up? Probably and I will answer.
I called the nursing home and asked how Al had been doing this morning. The nurse said good, no complaints from him. So I had her ask him if he would like me to bring lunch from the DQ and the answer came back yes.
I get there and he is laying on his bed. There is blood spots all over the floor. His bed is wet. He has a bloody rag in his hands and his mustache is filled with blood. I asked,”What happened?”
He starts crying and I do figure out from the pieces I hear him saying that he has had another nose bleed. This is like I don’t even know anymore how many, too many. I go to find out more information from the nurse.
Part of me is upset because there is a dirty pad in his chair filled with blood and left-overs of some type of food. The floor is as I said blood spotted. He is crying. What am I supposed to think.
I couldn’t find the nurse as usual. I go back in to Al and he sees the lunch I brought. He fights with all his power to sit up and the nose goes into more of a run now with the blood. He struggles to get in his wheel chair but does it. He has to use the bathroom so he puts his call light on. We wait a few but no one comes so I go on the hunt again for the aide and the nurse.
I do find the nurse and get the picture of what has been happening. Another nose bleed she says. She says,” I think Al is picking his nose and making it bleed. I stuck a flash light towards the opening of his nostril and I saw a scab.”
Ok I am thinking. So we turn to go check out Al and he is gone. I hear the stool flush so I now know where he is. The nurse calls me a way from the door and whispers, “Watch in the mirror here in the hall.”
I am thinking what? but I watch. Soon Al walks without his walker back to his wheelchair. I am amazed that he did it better than I thought. He stumbled a little but caught himself on whatever was close for him.
She and I walk in and she says, ” He can do more than he is letting on. He just wants your pity.” I said, ” What about the times when I am not here? Does he want my pity then too?” She just looked at me. Al heard all of this. He is so extra sensitive with his feelings. According to the neurologist this is a part of the Parkinson’s.
The nurse tells him,” You are just pulling your sister’s leg.” This really set his emotions off. He started crying. His nose started bleeding more. The nurse told him,”If you don’t stop the crying I am going to have to send you to the ER to get your nose packed.”
Al tried to quit but the tears just got faster. The tremors went in quad speed. The blizzard he was holding was spilling all over his clothes. His nose was running blood. It was a mess.
The nurse left and an aide came in. Between her and I we went through three wash cloths of blood and a clean outfit. He cried the whole time I was there. So he never ate his lunch and he spilled half of his drink.
This is my opinion. Al has been belittled by his Dad all his life. He has always been very sensitive. Now that the PD is in full swing his sensitivity is so strong that every little word that is attacking him he burst in to tears. The nurse’s words upset him.
I think Al is very very emotional. He gets his feelings hurt pretty easy. Just seeing what had just transpired proved me more right than wrong. I went out in the hall while the aide changed his clothes.
The nurse was waiting outside the door as if she was listening to the inside conversation. She said,” See he is just crying for your pity.”
When he was all cleaned up and it was him and I again I asked him how he could walk to the bathroom without help or the wheelchair. His explanation was this. ” I put on the call light but I can’t always hold it long enough until help gets here. I pee my pants. So I have quit putting the call light on. I can’t make the wheel chair go in the direction I need it to in this small room so I just walk to the bathroom and back to my seat.”
Part of me understood what he was saying but I told him I didn’t like him walking without someone being there with him, but he said, “Sis, I have to go pee and it won’t wait.”
Then he got all confused and told me he couldn’t walk down to the dining room. I told him that he was right. So the conversation and confusion about what to use when to use was all lost.
Getting Al to understand what I am saying is really difficult the more he has PD. I helped him lie down and told him to rest or take a nap. I took his food to the nurse and asked her to label it as he may want it later. I asked her to chart that he ate very little and she asked why. I just walked back to Al’s room without answering.
I know that was rude. I am sorry. I was frustrated. I didn’t know what to believe or who to believe. The nurse came back in to check on his bleeding and told me, ” You have to use tough love.”
I felt one tear from one eye and then one from the other.I didn’t want to show my tears. I told Al I loved him and that I hoped he would feel better. I said I would be back Tuesday. His room was filled with bloody rags and still spots all over the floor. The room smelled like stale pee. I turned to walk out and saw the nurse smiling at me. I walked on by.
Who do I trust? Me, the nurse, Al, God, who? My heart may be too involved with Al, I don’t know. All I do know is what I observed today. A mixed up PD guy who didn’t eat, was a bloody mess, and had never stopped crying. Am I too soft on him? Or does he just have good days and bad? Am I guilty in some way of him being in that wheelchair? Should I have practiced tough love and maybe he would still be walking?
I don’t have the answers. I do wish the nurse would have called me and let me know what was happening. I wasted the time and money on the food that he didn’t eat, and I left just as sad as Al was.
Standing under our favorite weeping willow tree
Seeing the swing that we too often sat on
Looking out over the waters flowing to channels
Birds calling to each other, babies please come home
I look to my side and don’t see anyone
But my shadow mocking my every move
I look up to the skies so blue
And luring me through white cotton balls
My mind reaches beyond the color of my eyes
Depths of haze that will fog my sight
I reach deep within my soul and I force out
The cries that have been buried deep within
Crashing the heavens with my urges
To see them once again
The flying creatures take refuge
As the shatters of my thoughts
Pierce the heavens far from my reach
My shadow falls to the ground
As the breath is shaken from the soul
My body follows in repetition
Lying beside the broken sillouette
Tears come sobbing from deep within
Rocking my world shaking my spirit
No one comes to my rescue
No one hears my cries
I grab the green grass between weak fingers
Smelling the earth of where bodies rest
No more request the world now silent
A voice whispers gently in my ear
My dear child I have heard your cries
Here let me wipe your tears
Stand up and stay strong
Walk with your head held high
For they know of your love
And I have instructed them
That you will be along soon enough
You must go forth and spread the word
Bring as many children to me as you can
Only when you have completed my task
Will you be joined with them once again.
I feel his hands reach my weak body
He tenderly stands me up brushing me off
With gentle fingers he turns tears to smiles
He blows strength into my body
And my feet begin the journey
He has directed me towards
I can see nothing as I look around
But our two spirits have connected
His hands disappear back to
The heavens and the birds
Begin to come to life once again
The skies bluer than water
Puffy clouds sheltering my walk
As I complete what makes my soul unbroken.
Terry Shepherd
03/02/2013
I received a call today on my drive to my water class. When I entered the front doors, I broke down crying. People stared but I didn’t care. Let them stare, they did not know me. I went to my class and my teacher looked at me and I smiled, but she sensed, I guess, that something is wrong. I told her a tiny piece and she said all will be alright.
For a split second I wanted to scream at her saying no it isn’t. Quit telling me it is going to be alright. It is never going to get better. I lied and kept smiling and told her I was sure it would be.
I did my hour of class. I tried real hard to pretend to enjoy it but all the while I kept thinking back to the recent phone call.
The call went something like this, Hello Terry? Yes this is she. I just wanted to let you know that Al is still reacting to everything. He is on a big pity party. He wants all of our attention and we are too big of a company to do this for him. He takes everything we say personally instead of the way we are intending it to be. I am afraid we can not tolerate the tears and anger that he shows. He has sworn at staff. We are going to have to find some other resources for him. I said, I am driving and after class I will be in. Thank-you for calling.
I went in after class and saw him heading back to his room from lunch. I talked to the nurse for a moment as I waited for him to make his way closer. She told me that she will not tolerate his pain being used for excuses of bad behavior. She explained that she has an autistic child at home who is 10 and she does the tough love thing, and she will do this for Al also. I just looked at her and continued to wait on Al.
When we got to his room I did discuss with him about behaviors and what was told to me. He started crying. I told him I certainly understand his pain but he can not be rude to others because of the pain. He asked what he did or had said and I told him what was explained to me. He didn’t remember any of it and he cried harder.
He told me that when he gets to the dining room he can not get himself under the dining table and he asked for help like I said to do, but they told him he could do it himself. I was so exhausted. I hate to bring me into the story. But the he said and they said just drive me crazy.
I told him to hang on. I said I was going to go get the social worker and bring her down so the three of us could sort through this. I left and went to her office. She welcomed me in. This is what I heard from this end.
Al made a comment to another resident that he was stupid and didn’t know how to get out-of-the-way. Fortunately for Al the resident was hard of hearing or we would have to report this to state. He is causing scenes by crying and being overly sensitive. We can not have this here. We are going to have to find another place for him to go.
She gets on the phone and makes a call, then the phone is handed to me.
We are going to meet with you Terry at your home one day next week. We have a couple of choices. He can go to a group home and I am placing him on the waiting list as we speak, or he can be placed on a Medicaid Waiver and he will be returned back to his home. It is possible that the waiver will make changes to your home so that wheel chairs can fit everywhere. It is possible that he will have help through the waiver for caregiver help.
The social service director said that it was two weeks until Al starts the special funding program of going out, but he may not make it until that time gets here. She told me to take a vacation and they would watch over him better than normal while I was gone. She stated that he could live for years to come and it would be a long time before I got another break.
She handed me a brand new book free of charge that talks about Parkinson’s/Dementia. She told me to go home and read it. She ended the conversation by saying,
I have to run some errands. I need to go to the bank and cash my check. I will let you know when I get a phone call.
I feel like placing him there was a mistake. They pushed therapy on his legs without my approval. He is now in more pain than when he was home. They made me feel like it was abnormal for Al to want one on one attention and if he wanted that, he needed to go else where.
I realize the Parkinson’s progresses but I have to admit I have never seen him as emotionally upset and crying and angry as I see him now. I can’t blame the facility. In fact I can’t pin point anyone because I don’t know why this is happening. All I know is everything is a mess. They have taken all of his money. He may come home or he may be placed with moderately to severe mental handicapped people.
I am not crying now. I already did that. I am more numb than anything. I turn my thoughts around in circles seeing nothing anywhere. I am tired, I am worn down, and I realize I am not alone, I have all of you. But, as I sit here, I sure feel alone.
Every little chance I see God working in our lives, I have to, well I am going to say, brag, scream, yell, and jump up and down and tell it to anyone who will listen! Today is one of those days my friends.
First of all, you don’t realize how important your friendship is to me. Without the friendship, I would have very little support system. Without friendship from all of you I would not get the abundance of prayers.
God listens people! He really does. Did you know that each time I write words on the blank pages, he is helping me? He does. I am the tool and he is the source that I drink from. I know that there may be a few of you who think I am foolish, but I am who I am and I believe In what I believe. This is the way God built me.
Today I had a meeting with Al’s facility. The first week he was no longer considered a visitor, there was a suggestion of maybe getting funding to help Al. With Al’s mentality, he is one of the few who are part of their system. Al is also considered very young, when you glance around and see the other neighbors there.
With the creative mind of one of the staff, today I received an answer. I met with three ladies who announced to me they were giving Al funding to be able to leave his room and go out into the world.
Paid staff from another business in our local city will go two to three times each week and pick up Al and take him to lunch, to antique stores. He may even get to go to a basketball game or two. He will be going to small cities close by and getting to socialize with small church group activities. He will be able to make new friends through all of this.
The sad thing is I could barely take him out anymore. I just didn’t have a van for his accessibility. I didn’t have four arms. I felt so bad that he was forced by me to have to stay home more and more. But now, starting February first, will be a part of the world and the fun activities.
The three ladies and I walked down to his room. He was napping but I nudged him until I woke him up. He didn’t put his glasses on, but instead sort of looked at me with those hazy, sleepy eyes. I introduced the ladies to him and told him why they were there.
He didn’t get it. He started to lay back down to go back to sleep. I explained it twice more to him and finally I said, “Bud, wouldn’t you like to go out to eat with friends? Wouldn’t you like to go to antique stores and ride in a comfy van instead of suffering to get into my car”?
When I said antique stores and coca cola collectibles, he sat up. He looked at the ladies and then he looked at me. I couldn’t help but start crying from joy, as his glum little face turned into the biggest most innocent smile I had ever seen, as he shook his head yes.
Thank-you Lord for giving Al another miracle! This gift from you will allow Al to face each day of pain with a little brighter star. I thank-you for your love that you give to Al and me. I can never repay what you do for him. I am so blessed to have a father like you watching out over us. You realized Al needed to be able to have something to look forward to each day and you provided the perfect gift. Thank-you from the bottom of my heart. Amen.
Who I am 