I Am Just Plain Pooped Tonight

A very special person who was in Al’s life came to visit him early this evening. Although he didn’t say much I knew by his eyes he liked having her here. I was happy for him and I heavily thanked her for stopping by.

Rhino, the cat has been acting so weird today. This morning he was pacing the hall way. He would go to Al’s room then to the hall and back to Al’s room. He would act like he was going to sit down and then back in Al’s room he would go. I got up and went in to see where he was at but couldn’t see him. This was around 7 this morning so with the time change it was dark in there somewhat.

I stepped farther into the room to get a better look at Al and suddenly Rhino appeared at the corner of Al’s bed. He stared at me for a second and then hissed at me. I quickly looked at Al to make sure he was breathing and then backed out of the room. Rhino didn’t follow me like he would normally do.

Then when my friend woke up she went in to see Al and Rhino was guarding the door way. She stepped back out and the cat stared her down as if saying get back! For the rest of the day Rhino has been sleeping, so I don’t know what that was all about.

Rhino 2Al has this wonderful nurse who had come out last night to change Al’s catheter. I really felt bad for her. To have to attempt this project not knowing what was on the inside of that tubing, had to make her a little nervous, or it would have me. She was so gentle with Al and talked to him during the process.

She did her best to do a fantastic job and I give her big kudos for what she did. But when I saw all the blood this morning on his legs I got worried. It was when Hospice made me think this was such a normal thing for what had happened and didn’t make me feel like it was worthy of checking him out that I blew my stack.

That wonderful nurse came out today on her day off and took care of Al. It brought huge comfort to me that she cared. She is a fairly new nurse and I hope that as time goes on she always keeps that compassion she has now. Thank-you R. for always being here for Al and me no matter what.

Al is still seeping blood tonight and there is blood in the catheter bag. I am keeping a good eye on it, you can count on this. If it starts to speed up or gets worse in any way, I will be aggressive with my voice again or do what I have to do to make him as comfortable as possible. To others I may seem like the biggest pain in the butt, but I am Al’s advocate, his voice. He was and is hurting and I am here to make sure he doesn’t suffer anymore than he has to. One day my voice will quiet, and the world will know that Al is finally in heaven, but for now, just call me big mouth.

The care giver is gone and my friend has gone home. The house is very quiet right now as Al is finally asleep and not moaning nor crying. I may not get a Hospice visit tomorrow or a care giver as the weather forecast for midnight until tomorrow is a weather storm warning with four to nine inches. I am so sick of the snow I could just hide under my bed covers until I see that first Robin of the Spring.robin

The weather man said that Saturday we may see more snow but no predictions of snow amounts yet. When is it going to stop? Tomorrow evening we will once again be in the single digits over night; a big four degrees. It has been a long, long winter with 109 inches of snow and it isn’t done yet. Along with the maddening changes of Al and his illness I really need to see a flower blooming.flower blooming

Pain & Friendship

Pain & Friendship

There are moments we feel alone

And the world is standing still

Everyone is moving

Against our very will.


When pain comes and hits us

We want others to feel it too

We think no one understands it

But we know some really do.


And through the moments we’re frozen

And our heart has swelled in pain

That one person out there

Will stand with you through rain.


Slowly our heart will melt

And the pain will fade a way

But when it again attacks us

That friend will walk with you that day.

Written by,

Terry Shepherd





lights 5 2014


Even Through the Night We Are Watched Over

Forget the toothpicks, put a way the splash of cold water. Get on your knees and ask the almighty God to do the difficult task that you can’t do. What is it?

Well my friends, Al never fell asleep last night until almost one in the morning. At two, four and five am he had me in his room. He was asking for pain medication and to be turned over.

When you are reaching the stage of nearing sixty, you can’t help but take a quick over view of what your heart is going to do after suddenly going from resting to rolling over a two hundred and fifty pound male.

I don’t actually think Al weighs that much any longer. He feels lighter but still, the heart is quickly in action. It is among these times before I grab the draw sheet that I quickly ask God for his blessing of power and control to turn Al over.

He can’t seem to be able to lift his cup, so I quench his thirst and massage his legs and then tuck him back in. I give him a quick rub on the arm asking him if he needs me for anything else. He quietly says, ” Sorry sis, sorry to wake you up. No, I don’t need anything.”

Of course I tell this gentle giant that it’s alright. It is no problem, this is what sisters are for. Then I watch through the glow of the white Christmas lights the tears once again start to fall from his eyes.

I lay my head on his shoulder and grab his hand and tell him it’s alright dear brother. Everything is going to be fine. God is in control of everything we do. Then I stand back up and pick up his head and move it in a more comfortable position on the pillow.

I roll up a pad and place it between his legs because his legs are in contraction. This will cause great sores from skin on skin plus it makes it hell to try to spread them in order to change his brief.

He is crying and his nose is running. Between soft sobs I can make out the words of how sorry he is that he woke me up. He explains how he doesn’t want me to tell him everything is going to be alright, when he knows himself he is getting worse.

I am forced to listen to words of how he is ready to die. I don’t know if God would approve of this or not because I hold no title, but I rested my head back on his shoulder and I grabbed his hand and held it. Then I prayed with and over Al. I am sure I must have sounded like a minister of sorts. God if you don’t approve of me pretending to be a preacher, I am sorry, but I have to bring comfort to a man in great pain and need of meeting you face to face.

I waited until he drifted off to sleep for another short session and then I stood back up and quietly walked out of his room. For me, hearing the old Hospice doctor tell me Al will be here for a few more months doesn’t cut it.

As I see the changes in him in this one week, I paste my vision of my brother’s eyes looking into mine into my memory box. I am never quite as sure anymore if I will see them open or not.

I walked back into my bedroom where I got a scolding from Rhino the cat. He was telling me it is still dark outside and I am supposed to be keeping him company while his fat fur ball lays there and snores. Yes, Rhino snores.

I smoked a cigarette thinking about how much more will Al’s body contract before it is finished and I remember back to the many patients I have taken care of. What a struggle it was to try to bathe or change them. I remember fingernails contracted so bad that the palms of their hands were bleeding.

I let a silent few tears slide then I got back out of bed ignoring Rhino and got on my knees and asked, ” Dear Lord, I know it is too early to early to get up, but I am wide awake. I am asking you to  hold my eye lids open for a while and let me speak to my friends on the internet. Then I will try to get a few more winks of sleep before Al calls out to me again.

I have three and a half hours before the helper arrives. When she gets here I may sneak off to my room for a nap. It will be empty of Rhino as he will be on Al’s bed guarding him for the day.


The Lump in my Throat

As I have stated before I am weak when it comes to people I love. I am writing this post to help heal my heart so that I will be able to sleep tonight.

When Al has had to go to Hospice house before he has a certain amount of time that he can stay.Hospice_house_lead_w_caption I pretty well know when he is returning.

But this Hospice visit is different. He is there only for medication management.

The Doctor sees Al daily at least once per day. I know that Al has had bouts of pain issues, irritability, tears and sorrow since he has been there.

I know that they have removed the nasty drug he was on and replaced it with a more nasty drug. They have removed that one and started a new one twice now. They have doubled at times and changed at others.

Today he has not had any problems. He has had very little pain. He seems to be holding his own. So I have two issues going on in my head.

1. I always had this invisible line in my head. I knew at some point when Al is in the active dying stage that I didn’t care what they gave him. He wouldn’t care at that point. Life would not mean as much to him, nor his cars or coca cola. But he isn’t in the active dying stage yet. That is the next stage he will go into. So my issue is how does he have quality life now? How does he enjoy anything and how can I keep him so he knows who I am and what is going on? When does that line disappear and we go to comfort all the way at any expense?

2. I was so totally confident that he would be coming home tomorrow. The nurse and I just spoke on the phone. She said in her opinion he is ready to come home but it is  up to the doctor and the doctor has to discharge him. Wow, what a disappointment in my heart.

But do I want him home and then he suddenly has to go back because his pain is not in control? Will he come home being so-called out of it? I must wait, it is the right thing to do, but my heart doesn’t like it. Rhino our cat doesn’t like it.

I know that they took Al off the nasty medication he was on here and put him on a different nasty drug with terrible side effects. Then they took him off of that when that didn’t work and put him on a new one. Then they had to double that dose because that didn’t work. Now today they have tried a brand new one. She said he seems to be better now.

I feel so bad for him. I know that when I am sick I just suffer like the rest of us and pray for the day I am better. For Al, he has suffered for a year now with pain getting worse by the month. How he must feel exhausted and worn out. How his spirit must sometimes feel like giving up, dealing with the aggravating pain and all the side effects of the medications.

A year and a half ago Al still walked. He didn’t need a cane. We didn’t need a wheelchair ramp. We didn’t have wheelchairs or hospital beds. He was able to go to the restroom by himself, feed himself, dress himself. Now this little bit of time later he is totally dependent on me.

He can no longer stand safely. If I do get him up he stands on his heels because his feet are so contracted. 90% of the time he needs to be fed. He wears briefs at all times now. He can’t ride his scooter or push himself in his wheelchair. He chokes at times. His breathing is usually labored at different levels. He has to be bathed and dressed. It is the fastest moving illness I have ever seen in my 23 years of medical experience. I hate MSA. If you look it up online you will see the terrible information that says they don’t know why these patients get it nor do they have a way to stop it.

I just wish I could do something to rid all of this from him. I know, only God knows the reason for all of this. I am only human but I have a very active heart when it comes to feeling emotions.

When she and I hung up I just wanted to sit down here and cry. My eyes welled and a lump in my throat appeared, but I know Al needs to be at some point of comfort before they will release him.

I can’t help it though. I miss him and still hope God allows him to come home tomorrow. I have such empathy for all patients that are terminally ill. I pray that when my time comes I just lay down and go to sleep. If I get an illness I hope it is short-lived.

Medications can help but with their strong side effects when you are dealing with several medications can  sometimes do more damage than the illness but you can’t let him or anyone suffer in great pain either.

Well it helped me, the lump in my throat is still there, but the eyes are still moist. Let’s hope that Al has a nice Christmas, right here at home.

The Broken Rose

Her branch pricked him

It pierced his heart

Blood dripping

Love pouring out

As she would

Never allow

Any man to

Get too close

For pain remains

Still alive from

Many years ago

When she let

One soul pick

Her petals

Her beautiful

Tender rose                                                            rose

Now singed

Edges blackened

From hurtful words

Now she stands

Alone with the

Most beautiful

Petals that have

Ever been seen

But too afraid

To love again

And soon she

Will die never

Giving  the chance

To let another

Touch  her beauty.

Written by,

Terry Shepherd



What Would You Do?

What would you do? I have had plenty of sleep and therefore I have plenty of open space to think. If you knew that you were going to cause physical pain by allowing Al to continue to go to Day Program would you let him go? Would you take him out to eat on his good days?

Would you keep him home and bed bound pretty much? Would you consider as I have what that will do to  his emotional state of mind?

While he has been at the Hospice House he had been bedridden. His tremors have slowed down with a new medication. He continues to sweat but not as bad. The doctor says he can’t get the sweating or tremors to stop permanently.

He is considering when sending Al home with some sort of pump for medication. He states that when Al is active he is going to go back to the way he was this past weekend.

I am not able to make a decision because I can see how I would be if I was pretty much stuck to a bed.

To me there is more involved here than his physical state. I can not ignore the fact that he is slipping a way. So what do I do with the time he has remaining. Let him live? Consider his mental capacity that he may not quite understand that he will suffer?

I am rambling on and saying the same thing over, so now I want to read your thoughts please.waterfalls



Whispers in the morning

Dew upon the ground

Leaves standing still

No one around

Hush little baby

Don’t say a word

Sister’s walking softly

Not even a tweet from a bird

As long as you are sleeping

Your pain is resting too

These are the moments I treasure

When you are back to you

And when you wake up brother

I’ll try to do my best

To make your day go quickly

Then you can lay and rest                                                               AnimatedCandleThoughtandPrayers

Hush little baby

Don’t say a word

Sister’s got it covered

Only silence will be heard.

Written by,

Terry Shepherd



#FWF Free Write Friday


Today Kellie has given us permission to just write. To think about what binds us from being the free person we are meant to be.

When I think of this topic and realize my freedom to write what I choose I think of sad things and happy things.

But there is one area in my life that remains a constant shadow. No matter how many posts I write there is one taboo that I write about rarely. I have mentioned this person in the book I am writing called  Parkinson’s Journey.

I think I have written about her indirectly but never addressed her in the way Kellie is asking us to do.

Maybe I can do this. It can’t really harm me, maybe it can heal me or put it to rest, at least. The topic is my half-sister, J for short.

This woman is ten years younger than me. She has been given every opportunity by our parents and still has nothing. Where I am day, she is night. Where I abide by the rules, she slides under the ruler.

Her children have suffered and I am sure somewhere deep inside her she is suffering. When we carry extra baggage for so many years and depend on that to excuse us from our own actions, it is time to let it go.

I have been healing through writing and yet she is still in the same rut doing nothing but spinning her tires. So why does she eat my guts up so bad? Maybe there is some sisterly jealousy. I have to smack myself for even partaking in this as I have nothing to be jealous of.

She has touched spots in my heart of people so dear to me. She has tried so hard to destroy me. Although she has not won, her actions still continue to haunt me today. She has caused Al to be afraid. We do not mention her name in our home.

I want to do what I wish and not be afraid of being arrested. I want to grab a hold of her and shake her good. I want to scream at her, stop what you are doing. Change your values. Look at your kids. Look at your life. How can you deny the fact that your own brother is ill? When Al placed me in a position to have to see you face to face it was one of the hardest things I have done in years. But when I told you to your face that Al wanted you to know that he is sick and he is afraid that he is going to die, you screamed and cursed at me to get out. To leave and never come back. You accused me of being a  liar, trying to start problems. You said Al is not even sick. When your best friend reached out to you last week begging you to call me to let you know of Al’s health today, you told her no,, no way in hell would you make that call.

I swear, I have given you every chance to come to your senses. To see the world straight, as it really is, to not be blind sighted, but you refuse. There will come a time when you will become broken. When you wake up and see Al laying on a white pillow with his Bible in his hands. When you see that all these months I have been telling the truth, there is a part of me that will snicker and leer at you and through you as you weep for your wrong doings. But the Christian woman in me will not allow me to continue to act in this way. If you do fall down and your soul splits open your chest bone. If you are so sorry and sincere I know that I will reach down and help you up. I will help try to do what God would want me to.

But at this moment, sitting here writing this, things have not changed. Things are rotten in Denmark, as they say, and all I can do is pray that you come to your senses sooner than later. Right now I just want to smack the crap out of you, but I won’t. For my own personal sanity, I will not venture your way. I will stay my distance. If you want to know anything about your sister and brother, you will have to be the one who makes that first step. I am tired of trying.



Pressed Against The Glass

fireworks.jpegPressed Against The Glass

I see  your face

Pressed against the glass

And I play  it over and over

Again as I lay here  bleeding

I can not feel my legs

Not even my arms

But my heart can

Feel you laying

Next to me

That last night

We spent together

And now I lay

Out in the open

Waiting for help

Crying out to you

Hoping you can hear

My words through

The stars that shine

Down on me; my love

If I don’t make it back

Please always know

That I loved you

Until my last breath.

Written by,

Terry Shepherd


May I Be Bewitched?

This morning brought a new day in a new week for a day at the Day Program. Al  was very tired this morning when I got him up. I know he didn’t sleep well last night after being so agitated and crying.

Once I had him up he ate breakfast. He had oatmeal with sugar and butter and a thin layer of peanut butter toast. He could not feed himself the oatmeal, so I helped him with that. He did eat his toast by himself.

After breakfast I washed him all up and got him dressed and ready to go. He wanted one of his vintage cars to take with him. It reminded me of when I used to do the “show and tell” at school. Do you remember those days?

He got on the bus and I came in and took my medicine and ate breakfast. I tried to answer some emails but the Hospice Nurse called and said she would be in to see Al in about an hour, so my time was up. I needed to get presentable.

We met Al just at his lunch time. He was finishing up. He was still having the side pain and the nurse thought maybe he had to go “number 2″ or it was a muscle from where he leans so badly in his chair.

After the meeting with him was over she and I spoke alone and I discussed my issues with her. I told her of the conversation he was having about death and blaming himself. I talked to her about the lack of wanting his pain medications.

She said that since he is mentally challenged he may not always make sound judgements so go ahead and give him one of his pain pills regularly three times a day along with his regular medications. I am to save the more powerful ones for visible pains. Along with his pain patch I hope this helps him. I just hate to see him suffer even though I know the reason he is trying to not take them is because he is wishing that now that he is home; somehow the disease would disappear.

She also said that she would contact the Spiritual Man in Hospice (minister) and have him talk to Al to try to help him accept what is truly happening. He did contact me and met Al at 3pm today.

When Al got off the bus he was very quiet. I assumed that he was thinking about the meeting with the minister earlier. But instead the first words out of his mouth was his side was hurting and he was at a  number five out of 10 in pain.

I asked him,”Did you tell staff that you were hurting?”

“Yes, but she said she isn’t allowed to give me any medicine.”

“Did she find someone who could?”

“No, I never got any. I am hurting, can you give me something to help the pain?”

I try not to jump to conclusions based on Al’s words alone as he does get confused at times. Yet I believe there is some truth in there somewhere. I receive a communication book nightly letting me know about Al’s day. It said that Al had a BM and that he had a good day.  So I sat down and wrote in it about what Al said and asked if this was true. I asked them to call me in the morning when they read my note.

I hope for Al’s sake that he is wrong. I can’t believe all the frustration we have had this weekend over pain medications and then he asked and didn’t get any. I will find out the truth in the morning, I can guarantee it.

The pain radiates into his daily living as he didn’t want any supper. I managed to get him to eat about half and he ate two cookies, chocolate chip, and he was done. I washed him up and he wanted to go to bed. I just checked on him and he is already asleep. I wish I could just zap my nose like Samantha on Bewitched and make everything all better for him.Samantha-bewitched-2443736-1024-768