Brother and Sister

It’s been a long day. A day shared with Al who is fighting pain and unusual sightings. I took him out yesterday. I took him to eat and to buy a car. We weren’t gone over two hours total.

After we got back home Al started complaining of leg pain. This has continued throughout the evening and most of today. I feel some guilt. Maybe we should not have gone, but then again, maybe he would have had this pain anyways.

Seeing his knee turning purple and then back to normal decided to have a partner. So it went to the knuckles and they have now been turning crimson and back to normal. The Hospice nurse says it is a lack of oxygen not getting to every part of his body.

The shower girl said today that he transferred just fine. I wonder critically how she would have noticed. She came here fifteen minutes late and undressed him showered him, dressed him and was gone in exactly seventeen minutes.

I take offense. Maybe because there have been other shower gals who have spent a few moments on the clock getting to know Al. Asking about tears, getting his mind of himself, but not this gal. In 17 minutes, I am not sure I could even pull it off with a complete job and be really clean.

But for Al today he has spent more time in bed than in his recliner. He slept more than not. He had an Ensure ice-cream shake instead of lunch. He needed assistance brushing his teeth both times today. He needed one over one help with eating his supper.

Should I continue to get him out when the weather is beautiful? Or should I pass it by knowing I could tire him out and perhaps be the culprit of his pains. I just want him to enjoy whatever he can in life.

I try my best

My little friend

To cause those smiles

To go on end.

I always have

Your best interest at heart

I squeeze activities in

Before you depart.

If I am the one causing

You more pain

Please give me a signal

And I won’t ask again.

Love you brother

You are my blood

I will miss you terribly

When God’s work is done.

Written by,

Terry Shepherd

08/11/2013Brother Sister Love

Al Fell

These past few days Al has been getting regular doses of pain medication. Along with his pain patch he has seemed to feel a bit better.

In fact his pain level is low enough, that he has become bold. His neck stays up a little longer. He reaches down to pick something up off the floor. He has tried letting loose of a stable object and try walking.

I have had many occasions with him where I have been able to talk to him about the dangers he is putting his body in. Bending over without the brakes on the wheelchair being locked is a big no-no and I have told him so.

Don’t get me wrong, I love seeing him in less pain. I love seeing him a bit more like his old self, but the fact is; he is still very sick. The illness hasn’t declined, it is only hidden by our infamous pharmacy companies help.

Al is blind sighted by this and it has scared me for a while now. This morning he slept in until I finally woke him because of medication times being very important. He ate good. I think his appetite has picked up some. I appreciate this although I hate to see him put any of his loss of weight back on.

After breakfast I washed him up and got him dressed. He brushed his teeth and I shaved him and trimmed up his mustache. He then wanted to sit in his lift chair. I got him located properly for transfer and locked his brake.

I stayed near him and watched carefully as he stood up and transferred the two steps needed to get in the chair. After the first step everything changed. He let loose of  his support and down he went.

He hit the floor with a big thud. I actually felt the floor shake under me. As he was falling my brain kicked in. I couldn’t stop the fall but I did reach out and grab his shirt and hung on for dear life.

I think it saved him from injuring himself on the container that holds his briefs, liners and pads. I hate myself when I can’t stop it from happening. I just couldn’t grab him fast enough. I checked him out and saw no blood or damages. I helped him back in the lift chair and I could see that he was very shaken up.

I didn’t want to cause more emotional damage but I had to throw in the remark that he needs to somehow come to terms with his illness. He has to admit it at least to himself that his body is sick and very weak.

He told me that he forgot, which maybe he did. I think our minds are used to doing what has come normal for many years. Walking, talking and breathing. When the body becomes sick and weak and these things we are used to doing without thinking become a struggle, maybe our minds don’t want to admit we are changing.

Maybe there is a part of Al which is desperately trying to prove the illness wrong. I don’t know. I know that I can convince my mind thoughts of things that aren’t quite as they seem, so I assume Al can too.

I had to call the Hospice nurse and she came and checked him out and made a report on him. His blood pressure was low she said. It was 85/58. When she told me this I knew that this could be a large tribute to why he may have fallen.

I will be watching more carefully when he rises from a sitting position, making sure he is steady before that first step. Al has been complaining periodically about blurred and double vision. I wonder if his low blood pressure has anything to do with it. Or maybe it is a side effect from his illness or the fact that he is taking one of the pain medications on a more regular basis.

Tonight after supper, which he ate really well, I washed him up and changed his brief. I helped him get in his lift chair and he seemed to be more careful and cautious. When he was seated and comfy he looked at me and asked, “I am so tired of being sick, when is God going to get me out of this and take me home?”

Al July 4th

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

Which Way Is Up With Al?

Saturday was a nice calm day for Al and me. I was a little surprised that he didn’t ask for any pain medications, but didn’t push it. Today, I woke him up so he could take his meds and he sat in his lift chair most of the morning. He didn’t even take a nap, like usual.

After lunch it started to change. He started complaining of pain in his side and his neck. He didn’t want to lay down and then it got too late to lay down as the shower girl was to be here at 2pm.

She had a terrible time with him as he was going back to his old ways of being crabby. He couldn’t hold his head up normal and he was so weak he could barely stand. After his shower I put him to bed immediately.

He only slept an hour and was back a wake.  For supper he couldn’t feed himself because he was too weak to hold his spoon and his tremors were a mess. After I got him all cleaned up and had just put him in his lift chair the phone rang. It was the beautician ready to come cut Al’s hair.

I knew it was shitty timing but getting her to come out on her days she did work was too hard. She came out and gave him a cut. She is good and she was quick. After paying her and she left I wanted to put Al in bed to watch TV but he insisted on his lift chair.

He then argued with me because he wants his bed side table full of cars. I offered to exchange cars but he wanted his way. I couldn’t give in. We need the space for his glasses at night, his remotes, light, bell, and he already has three cars sitting there.

He started crying trying to get his way, then he got mad. I sit here now thinking he has complained of neck pain and side pain. He is dead tired. His body is too weak to even help himself stand all because he turned down the pain medications.

I think he should have them anyways. It keeps everything under control. It helps stop the pain before it gets out of hand. It helps him to not get so upset and fussy. Now I have a brother who is refusing to lay down until bedtime and is at his worst.

I think he is trying to prove to himself that he doesn’t have his illness now that he is home, but he is wrong. We talked for quite a while and he said, “This illness is going to take my life. It is going to kill me.”

I hated it but I said, “You are probably right. This illness will get no better. It is going to make you weaker and eventually you may not be able to get out of bed. You need more rest so your body can sit up and eat. You need to take your pain medications so you don’t get to this point.”

He started crying and I had nothing else to say as I didn’t want to start the arguing again like last time he was here, so I left the room and got on the computer. Should I have ignored his saying no to pain medications or given him the pain medications anyways?

Here are some photos I snapped today in our home.

Al on SundayRhino being lazycaiden and AlAl and haircut

The Secret’s Out

I brought in

Your favorite meal

In hopes that it would

Make telling you easier

For me. I smiled

When I saw you

But you never

Smiled back

As the pain was

Overpowering your

Will to live

I choked and

I swallowed hard

And after we ate

I told you the

News that it was

Going to be yet

Another month.

Your shoulders dropped

And your tears did fall

My own heart

Fell and shattered

On the floor

I held your hand

And professed

That I care

That the day

The second that

I could take your arms

And help you into

The car I would do

It. We both shed tears

Although I promised

I would not but when

Yours fell so did mine

Baby brother I promise

You it hurt me more

To tell you of this delay

You wanted me to stay

But your spirits had dropped

I sat you in your chair

And watched you drift

Off to sleep then

I tiptoed out


I love you Bud

I truly do.

Terry Shepherd


In The Midst Of The Fog

The fog is rolling

A misty fog hovers

Inside my head

Squeezing out

All the feelings

That I have the

Ability to feel

Some say I

Am so strong

But there are times

When I doubt this

Sometimes what we

Know is good for us

Hurts worse than

When we can hide

Between the fog

And dismiss it

For only one more day

The heart feels

The eyes can see

That life moves

Forward when our

Hands reach out

To stop it

Laughter hidden

Tears can be seen

As the mind soaks

In new words

Taking too long

To digest it seems

It is one stage

At a time that

I must enter

Until it becomes

Perfectly clear

That life must

Not remain the same

That new doors

Will be opened

And others shut

Softly behind

Leaving all pain

To whither a way

Into dust being

Swept up in the

Midst of the fog

Until I can have

Time to understand………

Terry Shepherd


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