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

 

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.

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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.

Daily Prompt; Tourist Trap


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What’s your dream tourist destination — either a place you’ve been and loved, or a place you’d love to visit? What about it speaks to you?

Photographers, artists, poets: show us VACATION.

I was  born and raised here in good old flat-land, corn raised Indiana all of my life. But while I was married to my last husband who was never satisfied where we lived, I had the opportunity to visit places other than here.

I went to see my real mother out in Yuma Arizona a few different times. I tried actually living and working there to be near her, but it just wasn’t meant to be.yuma arizona Not only was my Mother’s love for me less than a dog’s instincts for her pups, I was the minority. People carried guns too. It is still like the old west in reality.

Then when I was married to my first husband, I was given the chance to travel to Stuttgart, Germany, where I lived and had my baby girl. I still dream of this country after many years have gone by. I loved everything I saw there, so this must be why I still dream about this beautiful place.stuttgart

I married my second husband in Florence Alabama. I loved the southern people, the laid back life style, but I have a lot of bad memories just with married life. Big mistake, big, big, big mistake.florence

When our Father died, Al hated the memories of the home he had lived in. I battled for years and still do about this house. It was a nice home, but it wasn’t home to me and Al didn’t like it. We sold it. That is the battle I have. Maybe I should have kept it no matter what our feelings towards it. It was paid for and it was family, but I can’t go back and change it now. I only wish I could leave it alone in my mind. We headed south. We had one aunt and my grandmother that lived there.  Our aunt who I will call M just thought we would love it here.

The first mistake I made is going on the word of someone else. I hadn’t ever argued with M, but she had lived in Florida for many years so our personal level of family was not there. I took the money from Mom and Dad‘s home and bought another home in Sarasota, Florida.

The homes are more expensive there than here. I think this is one of the bigger areas in my mind that I learned material crap is nothing more than crap. We had a home that was maintained by other people. It was in a nicer area of town. Complete with pool and tons of places to see and all several Goodwill stores and Salvation Army Thrift stores. The people were different though. I can’t tell you how many time ladies at stores would look me quickly up and down to see what I was wearing before they would respond to my hello. It was too rich for me. Many rich homes and people lived there. I had come from a size of 35,000 people to an area with more than 150,000 people. Too big, too rich for a country girl.

Al hated the pool. I got him in it one time, but he froze in spot. I helped him out and he never came within 10 feet of the pool again except one time. He sat on one of the lounge chairs with me.

I was able to find a place that was for disabled adults. Al went there M-F up until we came back home. He absolutely loved it. Since Sarasota is so large, his group was given many different tickets. He got to go to Tampa to see several ballgames. He went to Imax Theatres. He saw plays. He got to see alligators and all types of wild life.

But one day he quit qualifying for the program. His Parkinson’s was getting in the way. Al just couldn’t understand why he was not going to be allowed to go back. His heart and mine were broken. He didn’t care for the terrible heat, so he stayed inside most of the year. He didn’t like the pool and he was getting more sick, and becoming a patient of the heart and general hospitals.

Florida is a great state for retirees, but if you are a disabled adult who is mentally challenged too, you are up shit creek without a paddle. In our area there was no help. I was becoming frustrated and Al was still very sad about his day program.

I kept hearing Mom and Dad in my head. They were so mad at me because I had sold their home and went to Florida. But worse, I was thinking of coming back home. I thought about my kids and how they were here and I was there. The doctors that Al needed were back home and not in Florida. It made sense to come home but I was ridden with guilt.

The expenses of the property in Florida, giving up my parents home, and only being in Florida less than five years, plus the expensive moving in itself was enough to eat me alive with guilt by now. When I look back on this part of my life, I have come to terms pretty much with the big waste of money. It was a trip or a long vacation for Al. He had been left alone for so many years, that this was his chance to get out and experience life and have fun. Now with his Parkinson’s so advanced, I am glad I was able to give him those few years of total fun.

I talked to Al so many times back then. He never got over being miserable and his pains were becoming more often. I had the sad memories of Mom and Dad being in heaven if I came back here. All of our family but the half-sister were deceased. There was one aunt here but our relationship was ruined when our Dad died.

So why come back to a lonely and sad place? Why come back to the ugly, cold, long winters? I just knew it was the right thing to do, but still I fought with it in my mind.

sarasotaMy daughter gave me an idea. She lives in Ky near Bowling Green. She suggested we move there instead of back in Indiana. It was a brilliant idea to me, and Al was excited too. He loves my daughter and her husband.

I didn’t want to  purchase anymore property at this time. I didn’t know the areas, and quite frankly I wasn’t sure where this Parkinson’s of Al’s was going. We found a place to rent in Bowling Green. I went on the words of the landlord. I specified that I wanted and needed a very safe area to live in.

Well it wasn’t quite like she said, considering someone took my car out for a midnight stroll one night. They broke into the car and tore up the glove box. But in general we really liked the area.

Everywhere we went people treated us like we were family. They didn’t know the word stranger. We lived in a duplex and our bedrooms were upstairs. Things went along pretty well. Al got to visit the Corvette Museum and we went lots of places. We fit in nicely. Then one day Al started stumbling. He was seeming to have heart attack spells more and more.

After a few visits to the ER we discovered he had Angina. Now he had this along with his heart attack a few years back. What was causing the Angina was the stairs. Every time he climbed the stairs he would have another attack.

The doctor told me we had to definitely move out of a two-story place or Al would have another heart attack. I was disappointed and I think Al was too. At this point in my life I gave up the fight and we bought our mobile home back home in Indiana. I had to bring Al back. My conscience could not see it any other way.bowling green

Being back home in Indiana gives me very few comforts. Yes, I know my way around very well. Yes, my one son lives within walking distance of me. Another son lives about an hour a way. We don’t see him often and the son who lives close we seem to always be at odds.

Now Al has been dealing with Parkinson’s and the ugly parts of it. He lives in a nursing home but is coming home. I am lonely without my parents. Too many memories here. The winters are cold. My feet suffer so bad in the winter from my Diabetic Neuropathy. They burned and burned most of last winter even with socks and very warm slippers on.

WarsawCentralPark1I know that as long as I am taking care of Al, I will stay put. I don’t know what will happen if Al leaves this earth before me.

I know my two boys are here, but my daughter is in KY. I know that I loved that area so much.

I know my dream is to be back in Ky, but I don’t know if I will actually ever be able to do something about it.

I can hope and dream. I would be selling the home I live in, but to purchase another home with mobile home profits would be difficult. I guess if God wants me to go back to the blue grass state, he will find a way to help me make my dream come true.

Parkinson’s Gave Me Gifts


English: The Parkinson's Disease Society in Va...

English: The Parkinson’s Disease Society in Vauxhall Bridge Road (Photo credit: Wikipedia)

I have had a few people from blogging world and in real life that have told me there is a reason Al will not be going to heaven just yet. Some would say that maybe there were lessons in this sad illness.

In truth, I used to get angry, not at you, but at myself. I didn’t like it that Al was suffering and I was on the outside looking in. I was able to drive and walk, and feed myself. My numb feet from my Diabetes look so small when I see what Al is going through.

But as I look back in time I had to stop and wander a few things. Would I be as close to God if Al didn’t get this nasty Parkinson’s Disease?

I don’t know since I can’t go back and replay the scene. I do admit that I was a floater. I would float in and out of church when I felt like getting up and going. I would plaster my smile on my face and speak to strangers; when what I really wanted was to be home in my comfy clothes. Alone and not smiling.

There is a difference between being alone lonely. When I was in high school, I knew 98% of my graduating class. When I thought about friendships, I was friends with maybe 30%, but digging deeper I was friends with only 1 or 2 people.

I can’t imagine why, but I really did like it that way. Crowds bug me. You will never see me at the big pool parties, or the center of attention in any ring. Today, I am pretty much the same way. I have 1 very close friend, about 10 friends that I speak to on a regular basis, and I know hundreds of you here at WP.

Church, is another topic. Let’s see if I can explain it so you can understand where I am coming from.

I don’t care for church. I used to, but through my sorrow of loss of beloved family and seeing what Al is going through, I cry when I am in church. Then I wish I wasn’t there. Next comes the guilt that is heavily laid across my shoulders.

Mom always told me that a good woman could be found with a strong church background. So, I was disobeying her, although she is in eternal heaven, I know that it is wrong not to go to church.

Now flip that coin over. I am closer to God today than I ever was. I used to go to church regularly but I never gave it another thought once I walked out the church doors until the next Sunday.

Now, I pray and talk to God on a daily, and sometimes hourly basis. I feel like he and I have a connection. He is my rock and I am his sheep. When I get scared I run to him. When I feel weak or tired, I tell him and I expect him to help me. I thank him for the tiniest of things. If I stayed within my budget at the grocery store, I thank him for that. Like I said, I know that he is helping me every minute of the day.

So I know that I am stronger with him today than ever. This is probably the biggest thing Al’s illness has brought into my life. I know there is so much controversy  about heaven and hell. There is one, there isn’t. It is another higher scale of this earth we live on. I have heard so much, but the truth be known, I grew up in church, so I believe in heaven and hell.

Through looking at cute boys, to falling asleep in church, I learned things that stuck with me forever. I am not going to take that one chance and intentionally blow my chances of going to heaven.

What if there really is no heaven? So what? I can look back from where ever I am after my last breath and say to myself, I did Al a lot of good. I was kind to people. I turned the other cheek.

One other point I want to make and then I will shut up, is this. When Al became ill and I learned through the months that there wasn’t too much of a support system out here for me, I got my big defense wall built up, and said I can do it all alone. Who needs them?

Another false belief. I learned it feels good to  have a support system. I don’t have to cry alone. I can pick up the phone and call my friends. I can email you. I have gained so many friendships through WP and Al’s illness, I now realize I will never be alone even when I am sitting here where it is quiet. I have God and I have all of you. For this I am thankful for Parkinson’s Disease. But don’t push it, other than this, I hate his disease and what he is having to live through hourly.

Parkinson’s Disease or Medicatons?


English: a shell of an unidentified gastropod

I am being told by nurses at the Nursing Home and the pharmacy that Al‘s new Exelon Patch is not causing him to act so strange. Al reminds me of patients I used to be in charge over. He is dazed. He sleeps more often than not. His lips don’t move so I can’t understand him anymore. He cries all the time and he is confused.

The other day he asked me if I was going to come back for lunch. I was already there and we had just finished lunch. He is now confused about what day it is or sometimes what time of day.

Today when I walked in there he was very depressed looking. Come to find out he thought I was coming earlier. I told him that I don’t come earlier anymore because he is always napping. He apologized, and I didn’t want him to. It isn’t his fault he is napping.

I can’t totally trust the professionals. My gut tells me that part of this is Parkinson’s but another part are these darn medications. I have explained myself repeatedly that I never want Al doped up to the point he is not enjoying his life at all.

This is a drug world we live in. Not just the illegal ones, but the legal ones too. The pimp or supplier is often our physicians. I am upset. To spend the time and the money on gas to only see someone who is a shell really makes my skin crawl.

He has a plate guard that goes over his plate. Today at lunch he could barely lift his spoon up and over the guard. Of course he started crying then but he also wanted to do it himself. He refused any help.

Friday the kitchen was asked by the Nursing Supervisor to puree his meats for the entire weekend. I had been in on Sunday and had brought him a cheeseburger. It took him a half an hour to eat half of it. He finally told me to quit bringing him sandwiches. He refuses most of his meats at the facility.

I have been a licensed CNA for over 23 years. My charting for food intake has been the same no matter where I worked. Here at this facility they mark 50% above or below. There is no monitoring for proteins, sugars, or carbs.

I keep telling them since last week Al is not eating his meats. It has to be a texture thing I think. He chews it alright but then can’t swallow. He gets down applesauce, puddings and ice-creams very well. When I went in today I asked the nurse, the supervisor nurse, and the dietary manager all about the new experiment of puree meats for Al over the weekend.

I got the same response from everyone. I don’t know, I wasn’t here over the weekend.

Did they even try it? I don’t know. What will happen to Al if he gets too little protein? The Dietary Manager said she could substitute his meats for cottage cheese and yogurt. I didn’t realize yogurt was a protein. I guess I learn something new every day.

So what is going on? Is this Parkinson’s Disease causing him problems with swallowing? Is it the medications making the swallowing lazy? Or is he just too out of it to put any effort into swallowing?

When I got home from seeing Al there was a message for me. The facility has made a new appointment for him at a new neurologist. I don’t mind, but if they put him on more medications that freak him out or make him an empty shell, I swear I am going to scream.

I don’t want my brother to live like this. If he isn’t going to have any life at all, then why bother with anything. I don’t want an empty shell for a brother.

Al and Me on Mother’s Day


By noon this morning I had received two text messages from two of my kids telling me Happy Mother’s Day. On my way to go see Al I stopped at the mail box and got my mail. Inside was a beautiful card from my daughter who lives outside my area. There was a very useful gift card inside. I had never received a gift card and felt a little embarrassed when I had to ask my daughter what to do with it.

She called me this afternoon and wished me a Happy day also. Then tonight I heard the door bell ring and there stood my one son’s better half and their two kids. They brought me a card and a pretty necklace.

I felt pretty darn special, let me tell you. It was real nice to have one day off from the bad crap I have been dealt with this week.

When I saw Al today it was a complete turn around. No, he still has Parkinson’s, but his attitude and personality was wonderful. The new anti-depressant patch had obviously worked. He cut up with jokes with all the staff that walked by.

He talked to me about different shows he had watched on TV last night. He even did some embarrassing things at the dinner table like farting. Each time he did it he just giggled. It was making my face turn red but he was really enjoying his musical talent.

The only thing that bothered me besides the toots was his one hand. All five nails were gray and stayed that way the entire time I was with him. Inside where I can’t see the Parkinson’s is doing its thing. I tried for the most part to ignore and not keep glancing at them. His other hand was normal color. I don’t know what that meant, one being gray and alvin graduation picturethe other hand pink nailed.

We had a good time. I took him soda and snacks for the week, and he sent me home with raisins and miniature snicker bars. He couldn’t get them opened by himself and when the aids helped him he couldn’t chew them. His jaw must be weak or his mouth or his chewing is becoming weaker. I know that he still chokes on foods so no more gooey snack foods for him.

So far we have taken out of his foods, any kind of stringy meat like roast. We have taken out jello because the tremors won’t allow him to keep it on the spoon. French fries have to be monitored if he eats those. Milk only once a day because of choking. Cake icing seems to get stuck in his mouth, so I monitor this. He can’t have any kind of white meat chicken, and all meats have to be ground. Most meats even ground are starting to make him choke. We are training him to take a drink after each bite of meat.

I stayed with him until he fell asleep in his recliner. About an hour ago I got a call from the facility. He fell again. No one was in his room, and according to the nurse, he must have reached behind him and unhooked the bed alarm and stood up to go to the bathroom. He walked three steps and fell hitting his back on the corner of the bed. She stated there are no bruises and no scrapes.

I was calm, and I do know that I have seen Al stand up and head for the bathroom and I will instantly ask him what he is doing. He says going to the bathroom. I ask him if he is supposed to be walking and then he says he forgot and sits back down. I always sigh a deep relief because when he stands it is only seconds and he is down. I think it is his Parkinson’s/Dementia causing him to think he can walk.

I hope he will be alright. My internal alarms are on alert basis now. Not only from the fall but it seems about every two weeks we head to the ER from more of those internal tremors in his heart and chest, and it has been two weeks. I am keeping my fingers crossed on this one.

#FWF Free Write Friday; M is for Mom


http://kellieelmore.comm-is-for-mom-2

Our mom was my brother and my step-mom. She was the glue that held the family together.

When she passed away in 2000, our little family slowly fell apart. Dad became lost in his own sorrows for a few years.

I never knew what to say or how to comfort and soon time separated us more and more.

It shouldn’t have been that way, but life has a funny way of helping us to either make or not through loss of parents.

I think my brother, Al suffered the most. His  suffering wasn’t done like ours by talking about her and memories. His was done internally. Somewhere inside of his head and heart he built a shell as hard as a walnut.

He became more distant from all of us. He buried himself in coca cola and things that he should have strayed away from. Pretty soon it was evident that our family had come unglued.

I didn’t realize it for a long time that a lot of my own personal problems were due to the lack of being able to go to Mom’s house and talk to her. I didn’t realize that I had counted on her that much in my life.

She and I were never close like chocolate and milk. We were more like apples and pears. I hadn’t seen that through the years that I was growing up. I had omitted to let her know how much she meant to me and how thankful I was that she took us two kids in under her wings.

That has to be tough for parents. I have never taken kids  in to raise as my own. I do know that I have children in my family that aren’t what people call blood related but I fell in love with them as if they were. I always include them when I speak of my grandkids. I don’t see them any other way.

But for a Mom or Dad to take this role on day after day after year I assume there has to be some big adjustment times for adult and child.

Today was a day from hell for my brother. Although his Parkinson’s has brought about some dementia with it and no matter how badly he hurts physically, he never forgets our Mom.

He was really sad today. The real truth is he misses her just as much now as he did years ago when she went to heaven. Mom’s birthday is three days after Mother’s Day and so to him it is a double whammy. I tried so hard to console him today but I know in my heart that he will have to work through this alone.

I know my heart feels the void and there are still many times I want to go to the phone and dial her number, but alas, I can not.

Mom, I never told you this too often. Most likely it was because I was a stubborn brat and didn’t want to admit I may be wrong. I love you Mom. I know I caused you grief. You had your hands full with a full-time job, a new husband, and two new kids. I want you to know how sorry I am.

I am so certain that you and Dad watch over Al and me even now. I hope that you both are proud of how I have cared for my baby brother. I hope you are both smiling down on us. I love you Dad and I miss you so much. I love you Mom and I am sending you hugs from this earth up to you. I will see you soon enough and then I will give you a real big hug. Happy Mother’s Day Mom. You certainly earned your title.

Love, Your Daughter

Terryme and brother

 

 

 

 

 

 

 

 

monarchfree-write-friday-kellie-elmore

I Can’t Even Think of a Title For This


Blue_candleI have been stressed out today. I know, I shouldn’t be this way, but it was just one of those nasty days from outer space. The bad thing is nothing is so major that I am going to have death knocking at my door.

It is all the little pieces of strings that attach themselves to me as I walk upon this land. To start off I checked the mail on the way to go see Al. There it was, that bill that the collection agency called me about. Oh no, it is for real.

There was nothing I could do at that moment. I was on the road. Going in to see Al was a disaster in itself. Al was crying and seemed so depressed when I got there. I wanted to turn around and run but thought to myself,coward.

While eating he was leaning forward so far that food kept falling back out of his mouth. He could barely hold his head upright to eat. Then he would get teary-eyed again because he was frustrated. Then his silverware started playing songs on his plate as his tremors decided to have a party during meal time. That made him cry more.

There was a part of me that wanted to leave, because I get so sucked up in his emotions. Another part of me wanted to pick him up and rock him, and the other part of me tried to be the big sister and calm things over.

Finally the truth surfaced. Sunday is Mother’s Day and the 13th, just a few days later is Mom’s birthday. Al loved Mom so much. He has always struggled with her death. I asked him if he would like me to pick him up and the two of us could go place flowers on Mom’s grave. That didn’t go over at all. Then he wailed. Tears and anything liquid that could run did. It took two nurses and me to calm him down.

I wanted to kick myself in the rear. Why did I ask him that? Darn Terry. The truth was I thought it may help him feel closer to her but that idea backfired. I stayed a couple of hours and then I told him I loved him, and would bring him back lunch, snacks and soda when I returned on Sunday.

I went to meet a lady who sold me six nice starter plants of mint and orange mint. They looked really healthy. Next I paid a visit to the collection agency with bill in hand. I was just sure that the medical billing company had not sent  his bill to the proper insurance company.

But that wasn’t the case at all. In fact it was worse. This bill was from 12/2011. I had just been working these past two weeks on Al’s inventory and I knew without a doubt there was no bill I paid for over one thousand dollars.

I asked the lady to get a hold of the company and she said she would get an itemized bill for me. I had also tried calling this company twice while visiting Al but only got those stupid leave a message recordings, and of course they never called me back.

The bad thing about it all now is the time limit is past. According to her you only have one year to declare any changes to address, insurance etc. So by now being almost a year and a half later, no one, not even the government, she said, will go back and pay.

I was sick at heart. Here I am trying to find a way to pay this huge bill the nursing home wants. By the way, I don’t know if any of you keep tabs on the web page link for Al’s fundraiser, but we now have a total of $335.00. Many of you have helped and I so appreciate it. I have emailed and or made comments on the comment page about my deepest thanks. Here is the link if anyone would still care to help him. I think I am down to 52 days left. The link is

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

So now I have this big debt and a bill for over a thousand dollars and no one will go back and pick it up. I was sad and frustrated and mad all at the same time. I asked her when she received the bill for collection and she stated a week a go.

I pinpointed that this was way past the year dead line and why did the company wait so long? Why did they never send me a bill? She said to go home and wait for the new statement to arrive which would be a week.

I came home and went through the file for that month. I saw where Al had been in the hospital. It showed the correct address and it showed where I had paid them. But guess what, no where in that month or following clear up to this day today was there one single bill from this company. Now I was turning in to Al. I once again cried. Now it is up to almost eight thousand minus the help you all have given for the two bills.

I went outside and tried to erase my mind and planted all of the mint.  After that I didn’t feel like cooking so I went to a nearby restaurant and picked up some supper and I can’t believe I did this, I just can’t believe it. I went through the drive-thru and when I went to the window to pay and pick up the food the gal was complaining of having a bad day.

So what did I do? Yep, you guessed it. I rattled on about the bad two days I have been going through and then I just let loose. I started bawling like a big old baby. I bet that gal thought I had a screw loose. I don’t know if she looked a way or at me but I felt an arm on my arm and it brought me a sense of comfort. A human touch is something I miss very much. I could see that while she was on the other side of the window she was showing me compassion. It helped and then I felt embarrassed because I showed weakness. I thanked her and told myself, don’t come back here until you know they have forgotten your face.

When I came home I found out that the Case Worker has Al’s budget. He and I and the Day Program will all be meeting next Thursday. They will now listen to my request for needs for him and they will discuss the cost to have Al at Day Program. This will all be divided up in his budget and then after this  is decided, it will be sent back to the State. He said he hopes to have Al back in his home by June 1. I was excited and called Al and let him know but he was so sunk in Parkinson’s and Mom that he just cried again wanting to come home tonight.

So we had some good news in the middle of the storm, and now I have to hurry and make sure our house is as clean and open for wheelchair before next Thursday’s inspection. Then I have to figure out how in the world to pay these two debts off. It still makes me angry that the medical place waited until after the deadline to file it with a collection agency. It makes me angry that they never sent one single bill. Unless someone knows of a way around this, I figure Al will be deceased before these two debts are paid off. Or he will pay them until his passing and then they will disappear??? I don’t know.