Thoughts And Prayers
This is starting the second day now with a new change, that isn’t good in our home. Al has declined
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.
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.
I Give Up
Sometimes a situation comes along in life and when you are working on behalf of another human’s…
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-you
For the most part I have kept a suspicion to myself for several months. Any time I noticed it I…
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…
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.
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.
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
You have caused
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.
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.”
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.
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.
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.