Thoughts And Prayers

This is starting the second day now with a new change, that isn’t good in our home. Al has declined eating. Not entirely, but quite a bit. Yesterday he had one item for breakfast, an Ensure for lunch, and he did eat a pretty good supper.

This morning I was happy. He asked for pancakes. He also wanted his usual craving for sugar. He never used to eat sweets but he does now. He wanted a cherry turnover. I happily fixed him the pancakes.

He ate the cherry turnover and one bite of pancakes. Well, I tried. I tried a bite to see if they were edible. Yes, they were it was just Al.

He woke up with telling me of bad dreams he has had the past few days. This morning his bad dream was that he found out he had cancer. I laughed it off telling him that this wasn’t a bad dream, it was a silly dream as we both knew he didn’t have any cancers.

Sometimes I wonder in the back of my mind if he could have prostate cancer with all the dark on his bed pads. He also told me that the other dream he had was that I got sick and I was in a wheelchair just like him.

Now he had hit a tender spot with me. Although I told him he could see with his own eyes that I was walking; it reminds me of my constant bartering with God. I always pray, Lord, you can take me home when ever you wish. You can give me any illness you want; but wait until Al takes his last breath.

I took a deep breath and changed his brief and changed the subject. His tremors were a mess this morning. I didn’t know it for a while but Al has M.S.A.-P. This means that Al has Multiple System Atrophy with Parkinson’s Disease being  prominent. So this is why we see so many tremors with him.

Al told me through tears this morning after breakfast, ” I’m sorry Terry. I am sorry I can’t eat. I feel funny.”

” How do you feel funny bud?”

” I can’t describe it Terry. I just feel funny.”

He wanted to go back to bed. He had his shower and a clean brief and was put back in bed. At least he is not thinking when he is asleep. His body gets a break from the terrible tremors when he is sleeping.

My chin is up, my prayers are strong, but my hope is diminishing and my heart is breaking as I have to walk this journey with Al, seeing him fade a way from me and this world. I think Al knows it too. I think this is what he is talking about when he refers to he can’t explain it.


The Person I Have Always Known                                       AnimatedCandleThoughtandPrayers                                                       Blue_candle

I remember him lining up cars

On the carpet, being very quiet

Living in a world all his own.

I remember his first scooter

And how proud he was

He smiled as he rode by me.

I remember his first car

And the excitement in his eyes

Independence he had never experienced

Was now his forever more.

I remember his baring his soul

When he could no longer walk

The tears in his eyes

Questions with no answers.

As God prepares to take him  home

His memories I will hold dear in my heart

Nothing on the inside will ever change

He will always be my brother.

Written by,

Terry Shepherd



I Give Up

Sometimes a situation comes along in life and when you are working on behalf of another human’s wishes, you end up doing nothing more but screwing it up. Digging a deeper hole, and you can’t get out.

I wrote the blog last night about the donation. This morning before Al got up, I wrote the explanation. In a moment’s notice all my work has been done in vain. Al talked to the Hospice minister yesterday from what Al told me over breakfast this morning.

He discovered that he can use all his body parts for good cause. He is no longer interested in donating the brain. He wants to donate all of himself. I, personally have issues because of the horror stories I have read online.

Some places dispose of the bodies in terrible ways when they are done with them. This just gives me the shivers thinking my brother who I love so much could end up like that. Maybe I would not even get his ashes back.

I feel like I have no choice but to delete the foundation and the explanation post that I made early this morning. I am sorry for any confusion.

This is very hard on me. My brain is on high emotions. I will start a brand new search by asking our funeral home and talking to Al’s neurologist today. I need to keep my feelings contained and just act on Al’s behalf. Thank-youowl

Faster Than A Hummingbird

My morning wasn’t like I hoped. The first thing I did was change my sheets. When I came out to the kitchen I started the coffee and walked through the living room and stopped as I saw where Rhino got sick on the carpet.

I grabbed the cleaner and started to do my duty then off to get Al up. I should back track here and say that last night,  he didn’t want to get up from his nap after supper. After trying a few times I finally got him to wake up at 10:30 so he could take his medications and eat his snack.

After he finished he stayed a wake about an hour and then back to sleep. This morning when I woke up I could hear wild tremors through the baby monitor. He was a wake. So when I went in I had a big smile on my face until I pulled his blankets back and gulped and sighed.

Al’s internal furnace doesn’t work. His body doesn’t know if it is too cool him off or heat him up so he sweats terribly. When I stood him up he had sweated so bad that his image lay in the sheets. It was bad enough that the mattress itself was soaked.

I ignored it and got Al cleaned up and dressed for Day Program. After taking him to the kitchen and making his breakfast, I went to the kitty spot and it wasn’t good enough. I had to work at this two more times before I felt it was clean and odor free.

I then headed for Al’s room and stripped his bed and scrubbed the mattress down. After drying it good I took all the dirty linen to the laundry room. Checking on Al’s eating progress I saw that hundreds of beads of sweat  were popping out all over him.

When he finished breakfast he couldn’t brush his teeth as his tremors for the past few days have been quicker than a humming bird’s wings.banddemo.jpg

I brushed his teeth and washed him once again. I got his backpack ready and his lunch bag ready and sat him by the door. I went in and cleaned up the table and did the dishes real quick. I hurried and started the laundry.

When I went back to take Al outside to wait for the bus, he had sweated through his clothes once again. Another wash up and change of shirt. I gave him one of his medications to try to slow down the tremors and the furnace.

By the time the bus loaded him up I was ready for a nap. But it wasn’t going to happen. I had to meet Hospice this morning. Upon seeing him I noticed his sweating had decreased and so did his tremors, but he was in a roaring mood.

He was telling the nurse how bad his legs hurt  and cussing out the illness. She decided to talk to the doctor and see about increasing the dosage on his pain patch and to see if there was something for his tremors.

Al is taking the PRN medications now on a daily basis. The nurse explained that the more he takes the weaker his body will become and his agitated state of mind  will become stronger because he will notice his weakness.

It is like a darn Merry go round. It is never going to end. HPIM0140 He is going to take more and more pain medications to just get through each day until there are no more days left.

On my way home from seeing the nurse I came upon this stretch of road right before turning into my drive way. It is a straight shot. I suddenly started to think floor it Terry, just floor it. Drive like a demon from hell. Get the bugs out of your system. Clean everything out. Let’s go somewhere, nowhere, anywhere, but don’t turn into that drive.

The thought came and flashed a way. I came back to my senses and the sister I know I am and pulled into my drive. Back to reality I go. Check the spot on the floor. Finish the laundry. Squeeze in a little cat nap. Pull the pizza out of the freezer.  Dress it up better than it looks and pop it in the oven. Go outside and sit on the chair watching for the bus to bring my brother home.

M.S.A. ( Multiple System Atrophy)

I can see your dirty work

Taking more of his soul

Holding his feet with weights

Letting him move no more

You can’t begin to know

What you are doing

To his emotions

As you slither your

Way as a snake crawls

In tall grasses

Not only have you

Taken his strength

You have stripped

His hope

You have caused

Nothing but

Sadness and grief

You will not stop

You will continue on

Until you have sapped

The last breath he has

And he lays down

Never to return.

Written by,

Terry Shepherd

08/15/2013                                                                          Brother Sister Love

The Hospice nurse told me this morning that pain medications have to be increased. The M.S.A. is being aggressive now, taking what ever Al has left to fight with. Al has not been able to move his feet to transfer now for almost a week. Last night when I put him to bed he cried and told me,” I can’t fight anymore sis. I am tired and sick of being sick. Just throw me a way.”

What is Multiple System Atrophy?

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s.  Although what causes MSA is unknown, the disorder’s symptoms reflect the loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements.  The loss of nerve cells may be due to the buildup of a protein called alpha-synuclein in the cells that produce dopamine, a neurotransmitter that relays motor commands in the brain.

Is there any treatment?

There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments available to help people cope with some of the more disabling symptoms of MSA.

What is the prognosis?

The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.