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

09/15/2013

 

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.

If Anyone Is Interested, M.S.A.; A Terrible Disease


Al July 4thAl on SundayAl smilingAl's car 1alvin graduation picturealvin and meBlue_candleanimated-candles1.gifcandle-animated.gif

For those of you who follow me I thought maybe you would like to know a little bit about M.S.A. This illness is what my brother, Al has. It is not a fun disease, as most aren’t. This disease shortens the life by years and affects so much of the body.

I have spoken about it but it is a rare disease, so I thought I would share with you what I have learned.

 

Multiple system atrophy (MSA) is a rare condition that causes symptoms similar to Parkinson’s disease. However, patients with MSA have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.

Causes

The cause is unknown. MSA develops gradually and is most often diagnosed in men older than 60.

Symptoms

MSA damages the nervous system. Symptoms can include:

  • Face changes
    • “Mask” appearance to face
    • May be unable to close mouth
    • Reduced ability to show facial expressions
    • Staring
  • Difficulty chewing or swallowing (occasionally)
  • Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
  • Dizziness or fainting when standing up or after standing still
  • Frequent falls
  • Impotence
  • Loss of control over bowels or bladder
  • Loss of fine motor skills
    • Difficulty eating
    • Difficulty with any activity that requires small movements
    • Writing that is small and hard to read
  • Loss of sweating in any part of the body
  • Mild decline in mental function
  • Movement difficulties
  • Muscle aches and pains (myalgia)
  • Muscle rigidity
    • Difficulty bending arms or legs
    • Stiffness
  • Nausea and problems with digestion
  • Posture difficulties: may be unstable, stooped, or slumped over
  • Slow movements
    • Difficulty beginning to walk or starting any voluntary movement
    • Freezing of movement when the movement is stopped, unable to start moving again
    • Small steps followed by the need to run to keep balance
  • Tremors
    • May become severe enough to interfere with activities
    • May be worse when tired, excited, or stressed
    • May occur at rest or at any time
    • May occur with any action, such as holding a cup or other eating utensils
    • Finger-thumb rubbing (pill rolling tremor)
  • Vision changes, decreased or blurred vision
  • Voice and speech changes
    • Difficulty speaking
    • Monotone
    • Slow speaking
    • Voice is low volume

Other symptoms that may occur with this disease:

Exams and Tests

Your doctor or nurse will examine you, and check your eyes, nerves, and muscles.

Your blood pressure will be taken while you are lying down and standing up.

There are no specific tests to confirm this disease. A neurologist can make the diagnosis based on:

  • History of symptoms
  • Physical examination results
  • Ruling out other causes of symptoms

Testing to help confirm the diagnosis may include:

Treatment

There is no cure for MSA. There is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms.

Anticholinergic medications may be used to reduce early or mild tremors. Levodopa may improve movement and balance.

Carbidopa is usually added to Levodopa to reduce its side effects and make it work better. However, for people with MSA the response to medications may be disappointing. Many people respond poorly to treatment with anticholinergics or Levodopa.

Medications that may be used to treat low blood pressure include:

  • Beta-blockers
  • Fludrocortisone (Florinef)
  • MAO inhibitors
  • Vasoconstrictors (midodrine)
  • Vasopressin

A pacemaker that is programmed to stimulate the heart to beat at a rapid rate (faster than 100 beats per minute) may increase blood pressure for some people.

Constipation can be treated with a high-fiber diet and laxatives. Medicines are available to treat impotence.

Outlook (Prognosis)

The outcome is poor. Loss of mental and physical functions slowly get worse. Early death is likely. Patients typically live 7 to 9 years after diagnosis.

Possible Complications

  • Progressive loss of ability to walk or care for self
  • Difficulty performing daily activities
  • Injuries from falls/fainting
  • Side effects of medications

When to Contact a Medical Professional

Call your health care provider if you develop symptoms of this disorder.

Call your health care provider if you have been diagnosed with MSA and your symptoms return or get worse. Also call if new symptoms appear, including possible side effects of medications:

  • Changes in alertness/behavior/mood
  • Delusional behavior
  • Dizziness
  • Hallucinations
  • Involuntary movements
  • Loss of mental functioning
  • Nausea/vomiting
  • Severe confusion or disorientation

 

Bikini And Lots Of Skin


This morning Al woke up in an odd mood. He had refused last night’s supper and the night before supper too. This morning he struggled to eat breakfast. He really didn’t want to go to day program. He told me a couple of things. He said he didn’t have his chest pain but he felt odd all over. He also said that he felt like he was fading, that he was dying real soon.

Now you have to know that this bothers me so much when I hear him speak like this. I laughed and said, “You are not dying, you have a long time to go.”

I talked him into going to the day program as I felt it would be best for him. I also called the company and talked to them again about getting Al out of that wheelchair. They leave him sit in that hard old thing all day long. They finally listened and found a nice rocker for him.

The nurse called me about half an hour before Al got home. She said they were going to get him a new chair. I think I know what they are like. It is like a wheelchair but there is a padded chair inside that tilts back almost allowing him to lay down. Hospice said that they hope he will have it by Thursday.

Have you ever been in a position where you knew the news but it isn’t sinking in your brain? Or maybe worse, you are refusing to believe? As the nurse and I chatted I told her about the constant chest pains, the lack of suppers and him not really wanting to go to Day Program. I told her about Al’s remark about him thinking he was in the process of dying today.

She came back with words I didn’t want to hear. She said, “Terry, you and I know that Al is dying. Two doctors have documented it and obviously this is why he is on Hospice. It is very common to lose the appetite at this point and to also want sweets other than healthy foods. The next time he speaks of dying tell him it is alright to go. Tell him that if he wants to see Mom that it is alright; that you will follow along in your own time.”

I choked, I didn’t cry, but I choked. These are words I can not accept, at least not yet, maybe not until it is too late. Do I want to really tell him that it is alright for him to go? To not be afraid of dying? To go see Mom? How can I do this when I love him and want him here with me?

When he came home he was real chatty. This was nice. He had met a staff that put model cars together. From what he said they hit it off right a way and the staff promised to bring in one of the finished models the next time he worked. This made a complete difference in Al’s attitude. I am so thankful I urged him to go.

Al wants to go half-days. He says he just gets too tired. This may happen but not yet. We want to try the new chair first. We decided to have a pizza party, so I popped one in the oven since he felt better and we had pizza and pop for supper. He ate real well. I was watching him as he ate to make sure he didn’t choke and I suddenly noticed every fingernail was a medium gray.

The color never faded during supper. I have seen his nails go to dark gray and then leave before but never stand strong and stay and although he was eating well I was reminded that he is very sick and thought back to the conversation with the Hospice nurse. What if he mentions he wants to go see Mom? I guess I will swallow my pain and tell him it is alright to go.

It wasn’t a cheery day and I needed a good laugh to break the silence in my heart. I went through some magazines until I found a photo and I immediately started cracking up. I was laughing. Laughing over the picture and crying from the knowledge Al is so sick.

I thought to myself, am I going to be a swinging granny in my eighties dressed like this? Lordy, I hope not. I know men go through the change, will I also???? Oh my gosh what is the next chapter of my life going to be like? Here is the pic I cracked up at.

IMG_0563

Faith, Hope and Friendship


It is Thursday evening,7:30, and all is quiet. I feel like I am waiting for a package to arrive and maybe I am.

I have had some information for a week now but was waiting until I could tell you about it until I knew I wouldn’t break down half-way through the post.

I will say first off that anyone who prayed for Al and me and the situation about Hospice being involved did a great powerful job of praying. The prayer was answered. Hospice is going to be involved all the way.

The hours have been split between Hospice and the Day Care program. Al will have his bathing and dressing done between all of them. He will have 24 hour nurses at his door. He will be checked on regularly.

He even gets to remain active out in the community. I thought this program would end once he came home, but God wants him to be as happy as possible, so it remains.

I had the meeting with the State, the Day Program and the facility this morning. It went well until the administrator spoke his mind. He was considering not letting Al be dismissed because of the pressing debt we owe this place.

I was torn in pieces. My brother wants to come home so bad and yet he still owes over $3,000.00. To have to tell Al that he could not go home was enough for me to want to run and run and run. Just hide, never to have to see Al’s sad face and tears galore. I couldn’t deal with it.

Instead I spoke up and told him what I thought and what the Ombudsman thought and I told him that I would be following the directions of the Ombudsman, and that he would release Al tomorrow as planned or I would call the State back right here in the office in front of all.

He smiled that wicked smile, and then said I better make sure that bill is paid. I have 11 days left if anyone at all would like to make a small contribution. Any amount is helpful. The address is

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

I won’t ask again as the time for this fundraiser is almost expired. I want to thank all of you who have already helped and I want to apologize for asking one more time for help.

At this time, the hospital bed, wheelchair and lift chair have all been delivered. I have his bed made and the door is remaining open to open the room up some.

Excuse me while I choke a little. I told myself I am not going to cry. It is just I get tired. Tired of fighting everyone to get what Al deserves. Tired of the family that is left that never comes to visit. Tired of fighting the system, tired of the nursing facility, tired of seeing bottles and bottles of medicines and tired of sad news.

The news that I learned last Friday was not good. Al has another diagnosis on top of his Parkinson’s Disease. It is called M.S.A. It mimics Parkinson’s very much, but there are changes that happen that can place it in detailed form.

So many things have fallen into place this week. Why Al sweats so bad, why his illness has progressed so quickly. Why he cries more often than not. M.S.A. attacks the spinal cord plus the central nervous system and messes with the electrical system. His heart doesn’t know how to beat properly. He can have heart beats up to 300 per minute. The sweating is involved. Depression is very high. M.S.A. stands for Multiple System Atrophy.

I didn’t realize that the doctor had faxed this new information to the facility this week. I couldn’t figure out why so many were coming up to me and patting me on the back offering, I am sorry’s.

Then someone told me they knew. They knew what I had been running and hiding from. They knew that Al’s life had changed. Now I know for sure why Hospice is involved. Now I understand why Al is coming home on this precise date.  M.S.A. has a much shorter life span, and the news that I had to listen to from the doctor was, Al will probably not be here in six months. I want him to have everything he needs to be comfortable. He will end up aspirating from this. Food will go down into his lungs and this will take his life. I want you to have nurses around the clock for you to utilize.

These words still haunt me a week later. Life is going to be the best I can make it. For Al and for me. I am going to make a new memory out of every single day he has left. God knew all along what was going to happen. His plan was perfect.

So from here on out, it will be all of you, Hospice, Day Program and me, and I will get through this, because God knows I can do it.

Each day I will carry hope, faith and friendship until the very end.

friendshipFAITH-GIANThope

On That Friday Afternoon


I have sort of stayed a way from WP the past two days. I began writing today. I wrote a couple of posts so that I could ease into writing this one.

People always told me that God will reveal everything in his perfect time. I remember just a short time ago when I blogged about the cross necklace appearing in my hand when I was awakened by something urging me to wake up. I know how it got there. It could have been no one other than God. That necklace had been in my jewelry box for almost two years.

Do you remember me telling you that Al was to go to a new Neurologist on this past Friday? I didn’t really want him to go. We had a neuro for some time and I was content with his words that he had done everything he could for Al, but he would remain a PRN doctor, as needed.

The weekend that Al had tried to harm himself the Psyche doctor wanted Al to have a second opinion. To say the least I fought it tooth and nail. What a waste of time I thought. But after speaking to a friend about it, I was reminded that it couldn’t hurt to have a second thought from another professional with many more years experience on him.

Well I met Al over at the doctor’s office Friday afternoon. I hadn’t remembered it but we had seen this doctor  not long after Al had his heart attack. The doctor remembered Al and let us know we had been there prior.

He had so many reports from doctors and ER visits plus Al’s visit prior. He did a thorough exam and then asked me to come to his office. He left Al sitting in the waiting room while the two of us spoke.

He told me he had suspected Al had PD way back when and was amazed at how Al had declined in these few years. He added some more information to Al’s file and diagnosis and then asked me when Al was coming home. He asked me lots of questions.

When it was all done and the room became quiet, he began writing. He handed me one script. He added that there was no medications to give Al as there was nothing more to do. When I took the script from him and read it said, flashing starHospice to be involved. High risk of aspiration.

I looked at him and said,” I have tried to get hospice involved before, but they always say the same thing, there is no ending date for Parkinson’s Disease.

He looked at me and said, “now there is.”

Silence filled the room and I stared at him. He said, “Al is pretty bad. His heart has taken a big toll. I have all of the reports here that confirm it. His central nervous system is out of whack. His next step will be aspiration. You need Hospice now.”

“But you must have six months or less before Hospice will take over.”

“He does have six months or less.”

Tears filled my eyes and I sat there weeping until I could go get Al with dry eyes. As I pushed him out of the office and down the long ramp, everything became clear. God was revealing to me so many things.

1. Al went to the nursing home so I could have a break. God knew that now Al could come home because I have had enough rest I can carry this out to the end.

2. I knew exactly why I had taken the foolish move to Florida. It was for Al, I was able to give him some of his best years of his life doing things he had never done before.

3. I had tried so hard to get a job but couldn’t land one for the life of me. Now I saw, my time will come to work, I need to be here for Al for a while longer.

4. The heavy sweating, the constant tears, the struggling to eat and swallow. The internal tremors, the trips to the ER, everything became clear.

God has been letting me know by all the signs that he was going to take Al home. God knows that Al doesn’t want to die at the nursing home, so now he has perfected the timing and is sending him home. Everything is clear. I can see God’s plan.

Friday of this week Al comes home. He will get his wish and be able to stay here for the rest of his life.

The doctor, specialist, that I fought so hard to not go, was something God knew that I needed to do. The questions that I had asked for so many months, God knew that I would get all of my answers on that Friday afternoon.

Weekly Photo Challenge, Theme of the Week


catching-fly-12919722I spend a lot of time at home. I admitted yesterday on a post that I wrote that I can get deep into my zone by cleaning. Yes, I know it still sounds just as crazy today as it did yesterday.

But, I will have to let you in on a little secret, I don’t get off on cleaning the entire time I am at home. Sometimes I will bake some cookies and take them in for Al to munch on. But that idea is fading a way. Most times when I go in now and check his drawer of sweets, they are still sitting there.

The day I see that Al has not touched Pop Tarts, one of his favorites, I know the Parkinson’s Disease has truly consumed him. They are still sitting there unopened.

Sometimes I like to get on U Tube and listen to songs. If I think they are pretty awesome, I will transfer them to my web blog, Music That Calms The Soul. There are other times that the stress of Al and the sadness he endures just plain old makes me tired, and I will nap my afternoon a way.

But, now, I have someone else to keep me company. Rhino, my 25 pound cat. He is so fat and I have to say lazy, that if he wants something; it has to come to him within paw’s reach.

Last night he shocked me. I heard my antique bells on the front door. My first thought was that my son’s children had sneaked in to surprise me. I flipped around from my computer desk and lo and behold it was Rhino.

The flies must have really gotten on his cat nerves. He had tried to attack them through the screen. Luckily for me he didn’t indent the screen. He just knocked the front door back a bit and made the bells ring.

Gee, I hope he doesn’t find this entertaining and learn that he can make bells go off and make my own bells go off in my head. It was a quiet night. I had Mash on the television in the background. It was just Rhino and me.

I didn’t realize it but for at least a half an hour I watched and waited for Rhino to do his magic act and let me see him in motion. This is something I don’t see often. He either meows for wanting to be petted, or he is eating.

Even you can get some joy from this. As Ma says in the Golden Girls Sitcom, picture it, 2013, a very quiet house. No noise but the keyboard and Mash. Bells go off and as I flip around I see a 25 pound flying cat doing the disco song to , I’m gonna get you nasty fly.

http://dailypost.wordpress.com,Weekly Photo Challenge ,“postaday″

A Visit With Al


al's birthday partyToday I went to see Al. He was hard to wake up for lunch. It took several times calling him then finally an eye opened. He never even knew I had been sitting there for sometime. We had lunch together and then they weighed him.

He has lost another six pounds. The nurse said this wasn’t bad at all. I tend to disagree with her. How many weeks is he going to continue to lose a few or more pounds a week before they do anything. Or is there anything to do about it.

He only cried once during lunch which I thought was real good. He cried while he told me some new staff was working. They were in his room and the experienced staff were telling him some things so that Al would continue to get good care.

Al said,”They were talking about my past. Everyone wanted to know all the bad stuff about me. They even told them that I wet in my pants.” I explained that they were just informing the new girls of important things about him so he wouldn’t have to stay in wet pants very long.

He didn’t like it so I asked the girls if they could discuss things about him out in the hall where he can’t hear them. Al has always been so sensitive about himself. He isn’t proud that he wets himself or spills food or any other thing that he didn’t used to do.

I wish there was some type of brace to hold Al’s chin or head up. Today I swear his chin was an inch from his plate. He still struggled to get food in his mouth. He ate his whole meal in this position. It makes my neck hurt just seeing his drooped. I guess this is part of the Parkinson’s Disease.

He went out on an outing after lunch so I hope he had a good time. I talked to the waiver people today and the guy told me he was hoping to have all of Al’s data entered by Friday afternoon. I am to call back and check on Friday, late. He also said that once the State received it they legally have 45 days to sign it but it could be back in a week’s time. So I just reminded him that we had been working on this since the beginning of March, so this is why Al is so upset. The guy asked me why I don’t put him on antidepressants. I said, why, he is only sad because he isn’t home yet. Silence, and then call me back Friday. I will for sure, he can bank on it.