Words From Indiana

Look at this weather here in Indiana! Cold or chilly, use your own wording. Here in Warsaw, it is below our average May temperatures, but on the other hand, it’s really going to make us northerners appreciate our summer.

It sure seems that the Corona Virus has played havoc on 2020. We here in Indiana, have began to reopen our state. I am not eager to venture out. The numbers are still rising on the sick ones, although there has only been one extra death. How is it in your state? Are you reopening? If so, what businesses are open? I saw that one of my favorite places to eat is now accepting dine-in customers with many restrictions. It’s called Culvers. It’s an ice-cream shop with the best service and the best food.I absolutely love their fish sandwiches. I have never been disappointed. Culvers .hires mildly challenged people and I am all for that. I always have appreciated employers giving the challenged an opportunity to work and feel good about themselves. I know how my brother felt about working and receiving a pay check.

https://www.culvers.com/restaurants/warsaw?utm_source=Google&utm_medium=Maps&utm_campaign=Google+Places

My brother was mildly, mentally challenged He had the lowest, paying job for the nine years he worked there but he never minded. He never missed a day and was a dependable employee. He was so sad to lose his job after suffering his heart attack. He cried. He just didn’t understand why he couldn’t go back. My brother was a very routine kind of guy, so this really messed him up. Unfortunately I lost him to the terrible disease called Multiple System Atrophy. He passed away in 2014.

What are you doing with your time? Have you been able to work from home? How has your home life changed? I have had many more aches and pains from doing much of nothing. I tinker around the home but I need to be doing more. If we can get warmer weather daily, I want to walk as far as I can with my walker. Although, I know my blood pressure bottoms out when standing, I keep telling myself, with more exercise, hopefully I can fix this. It isn’t true but I continue to allow myself to think about it.

Well, I’ll end this with wishing each of you mothers with a gift from me to you through cyber space. I hope you all find something good about tomorrow!!

Daily Prompt/ One Word Prompt

DAILY PROMPT

Genie

Write a new post in response to today’s one-word prompt.

 

A Genie in a bottle. The first thoughts that come into play in my mind are Multiple System Atrophy patients, caregivers, families and myself. I personally felt, like a Genie in a bottle.

One illness, five little words, one doctor’s appointment can change everything from that day on. Watching little changes become bigger changes isn’t fun. Helping with falls, recreating meal preparations, setting appointments with various doctors, rearranging rooms, taking out furniture to make room for new furniture, interviewing caregivers, looking at any programs that may help off set expenses. This is truly a Genie kind of life.

Why do I say that? Simple, very few professionals have ever heard of this disease, which makes it difficult to get the help you need. There are improvements on literature, so your power becomes stronger with reading.

Getting insurance companies to understand this is a disease that needs to be covered is a task within itself.  I felt like the Genie in the bottle. I tried and tried, but the top of my bottle just wouldn’t pop off.

What is the best thing you can do if you need help but can’t find any? Join Facebook groups for Multiple System Atrophy. There are several.

This is one of the newest groups I created. A place to feel comfortable enough to speak your mind in private.

https://www.facebook.com/groups/374109256406780/

 

This is one of my older groups where you come to visit, be inspired and meet other families and patients.

https://www.facebook.com/MSAfeelingstressed/

 

This is a group for caregivers. It is an awesome group to find strength and answers in others who are going down the same path as you.

https://www.facebook.com/groups/168770156602557/

 

This is a group formed to learn more about Multiple System Atrophy.

https://www.facebook.com/groups/48942097968/

 

 

This is a group that I love. I found so much support here while my brother was still living. My friends from this group are still my friends today. A wonderful place to congregate.

https://www.facebook.com/groups/MSABuddies/

 

As you know by now, my birthday is this coming Saturday. I need still two hundred dollars to meet my goal. I am requesting a $1- any amount from you, my friends to help me reach my goal of $500.00. Can you help?

https://www.facebook.com/donate/566976957002931/

 

I wish this terrible, nasty, roller coaster ride of a disease on not even my worst enemy. Not only will it change your life forever; there will be times when you feel like that Genie in a Bottle.

 

 

 

 

 

Who Cares

 

 

WHO CARES

Who cares?

Do you?

Does she or he?

Who cares?

Do you feel my pain?

Do you know my name?

Who cares?

When time stands still

And others walk on

Who cares?

MSA cares

Yes, they care

We share

Hearts connected

Prayers said together

Who cares?

You do.

Written by,

Terry Shepherd

1/13/2015

My New Facebook Page

I have talked a little bit about my new Facebook page. I am almost at the 100 Likes on it which makes me happy. It has spread to about 900 people now and I have had it for a week.

I thought it only polite to let you see the page if you care to. If you know someone who has Multiple System Atrophy and would like to share it, I would appreciate it, in fact, I hope all of you share it with someone.

https://www.facebook.com/MSAfeelingstressed

 

 

Al, Update

Today when Al woke up he was irritable once again. I gave him his medications and let him watch Dr. Charles Stanley.

 

After the program was over a volunteer arrived and together we bathed Al. He whimpered because it hurts so bad when he has to be moved. I noticed an open area on his ear and he had some catheter issues.

I called…

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Al, Update

Today when Al woke up he was irritable once again. I gave him his medications and let him watch Dr. Charles Stanley.

 

After the program was over a volunteer arrived and together we bathed Al. He whimpered because it hurts so bad when he has to be moved. I noticed an open area on his ear and he had some catheter issues.

I called Hospice and his favorite nurse came out and spent not only time fixing the problems but some quality time with him going back over memories. Al has known this nurse since she was in her teens.

She used to fill a pop machine and when Al was there he would watch her and then follow her through the store. I think Al always thought she was a pretty girl. Finally the owner would have to tell Al to stop and he would leave waving bye and with a big smile. Al and I have been going to this same place ever since we have been kids. The owner always understood Al’s mentality and I will forever remember how kind everyone in the store was to him.

Even as of months back I would take Al in his wheelchair to go in and visit and eat in their lunch counter. No one went without saying hello to Al and asking how he was.

So the time between the two was special today. There was some two-sided conversation too. Al was able to say the name of the store. I don’t know about the nurse but I could hear Al sobbing from the living room.

Other visitors came today also and I have to say there were tears and hand holding and pizza shared. Conversations turned to God and before I knew it we were sharing our own Bible study right here in my living room.

Later the door opened and a surprise visitor came in. It was my friend. I had insisted she did not come up, but she usually doesn’t listen to me. I am not the happiest girl in the whole USA, and there are times that being alone is better than ruining others days.

 

Al has made it pretty clear through his gibberish talk that he wants to go to heaven pretty bad. Sometimes we could hear him ask how does he go to heaven? It was just then that a minister knocked on the door.

I let him in and he went straight to Al’s room and prayed for him. Al had quite a few visitors today.

There were many emotions running through the house. Al’s oxygen levels continue to drop. He didn’t get much sleep today.

I was just in there offering him supper. He did eat a small jar of baby food. I was not surprised as he had not eaten lunch.

He began to cry and jabber again but this time I couldn’t understand anything. I hope he was praying and I hope God is listening.

Let The Angels Come, But Please Dry My Tears

I am so tired. My back is aching. I had no caregiver help today, and on top the other caregiver…

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Let The Angels Come, But Please Dry My Tears

I am so tired. My back is aching. I had no caregiver help today, and on top the other caregiver called off for tomorrow. My heart just sunk. Al is worse as of last night and I so did not want to be alone when he passed.

I am not saying he will pass tonight or tomorrow, but I won’t be surprised if he does. Last night I was having terrible times with his catheter. Today only got worse. I couldn’t even empty it because of what happens when the kidneys are shutting down.

Hospice nurse came out today and ended up taking his catheter out and putting a new one in. Now since 4pm he has had nothing but solid blood going through. It scares me, I am not even going to lie, but I knew I would have someone with me tomorrow, but not now.

The weather is bad or supposed to be high winds and below zero temperatures. I don’t want either of the girls to wreck or anything and yet I need the help. Too bad Al didn’t get worse in the summer, right?

I called Hospice back this evening and the only thing she said was,” Well he said he was dying in two days, right? Well, I guess I could have scraped the prostate, but anyways, it is almost all over.”

Let me tell you how much that did not help me hearing those words. Tonight I feel about as low as I can go. I was up until 3am with Al last night due to his pain and catheter. I was planning on going back to bed when the caregiver arrived, but that didn’t happen.

Now he is having his labored breathing and just staring into space. His cheek and one eye swelled up last night with fluid. Now that has left and the opposite eye is swelling up now. Hospice said that since the heart is slowing down I will notice pools of fluids in places. I guess that is one of them.

The swelling left in his one hand after having an internal catheter, but now the opposite hand is the size of a baseball glove.

I’m tired my friends. I’m drained to the bottom. There is absolutely no reason Al is hanging on and if there is a God out there, why would he want Al to suffer when there is nothing left but pain and bleeding and swelling to deal with. It just doesn’t seem right or fair or logical to me. I hope I get some sleep tonight, but with the constant bleeding, I doubt if my mind will shut down. Probably going to sleep in the recliner again tonight covered up with my best friend’s blanket she left here.

Lessons In Every Situation, Roar Into 2014

2013 for me. I don’t remember a whole lot. Life seems quite a blur. Al was in the nursing homefrom…

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Lessons In Every Situation, Roar Into 2014

2013 for me. I don’t remember a whole lot. Life seems quite a blur. Al was in the nursing home from January until June. I remember plowing through snow and cold to go see him. I never wanted him to think I didn’t care.

Groceries were not bought much. The bills remained the same most of the year. The TV shows got sillier. None of them really grabbed my attention except American Idol. Somehow looking forward to two nights a week to this show made the winter months go by faster.

June came and Al came home and then life was still not that bad. Life is never as bad as we think it is in the moment we are living it. When we move on down the road and are faced with different challenges, we sometimes look back and think, I wish I could go back to that time.

For a while I was still able to get Al in the car. We went to some antique shops. We went out to eat. I was even able to take him to one more big car show. We went places and Al was placed in an adult program where he could socialize with others. Life seemed pretty good.

Then it was like a blink in an eye life began to change for the worse. Al’s MSA (Multiple System Atrophy) seemed to really kick in. No longer was I able to get him in the car alone, and with no help we had to give up the outings. Life became a little more quiet for him and me.

In no time at all Hospice was involved. Al went from being able to shave himself to me shaving him. He no longer could brush his teeth, I did it for him. He went from finger foods to some help with eating to now; which I feed him all of his food and drinks.

He went from a being able to stand with assistance in his wheelchair to his legs no longer holding him up. Today, he is bed bound. He gets all of his baths in bed. Only a month ago he was still able with lots of help to get a shower.

Now he stares at the TV when his vision will focus. His eyes water, his fingers and hands are locked in a prayer position. His legs are curled in a fetal position, not bad, but getting there.

Instead of him and I decorating for Halloween and Christmas, I did it alone. Al was in the hospital during Thanksgiving and he slept through Christmas. Family came but Al remained in bed.

I have learned to lean on God more and more through this illness of Al’s. I have been angry at God, screamed at him, asked for forgiveness for not being as faithful as I could. I have learned to lean on others for help, such as Hospice, homemakers and ministers.

I have learned who my true friends are and who I can count on when in need. I have learned that I have a huge support system with many people on the internet. I have been shown how many care about Al by all the cards and gifts that have been sent.

I have been taught that to gain strength, all I have to do is pray about it. I have learned how to cook for one and puree for Al. My laundry has doubled, cleaning is still going strong. I am tired and now try to nap when I can. I have learned that the house will always be waiting here for me. The dirt is going anywhere.

I am glad that this year is ending tonight. I would not really want to relive it again. I am hopeful that things will be brighter in 2014. I pray that the Obama Healthcare works itself out.

I hope more lean on their own strength and realize they have more to offer this world than they think. I hope Al finds peace and is reunited with our parents. I pray that I will be able to move on and remember Al with smiles. I hope jobs pick-up and crime is less. Schools offer the basics and we have less drop-outs than ever.

My family will expand by two this new year. I wish for my own family good health and common sense, so that they can survive yet another year. Life isn’t easy, it won’t be from this day on. But with careful consideration and a loving Mom standing behind them, they too will find what they seek.

I hope that each of you stay safe tonight. If you are going to drink, please don’t drive. Beware of your surroundings. Don’t be too proud to take a taxi home if you need to. Tell you children you love them. Hug your parents. Stay positive. We are in this together no matter how many miles separate us. It is up to you and me my friends, to make or break this world.

So to each one of you, Happy New Year, 2014.

P.S. Don’t forget to change your calendars and write 2014 on your checks tomorrow.