I Am Just Plain Pooped Tonight


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…

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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

01.11.2014

 

 

 

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.

jesuslookingdown

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

09/16/2013