It seems so right that I changed the name of my blog page to Who Am I, months ago. Why? Because anymore, I don’t really know who I am.
I know I am a child of God, but here on earth, I just don’t know. I know I am a mom to three and a grandma to several, but some days, I don’t feel like a good mom. I have one child who pretty much has disowned me, it seems. I have begged, pleaded, called and text but no answers are provided for me on what I may have done.
This has turned my health upside down. My blood pressure is now messed up going higher than lower. I am stressed with sadness that keeps my veil of happiness covered by blackness.
I have apologized, sat for hours wondering what I may have said or done without realizing it may hurt others. I am getting sick and I find myself wishing I was at the end of my journey here on earth.
I snap out of that thought though because I am not really ready to die yet. I even called my primary and neurologist and have spoken to both about this up and down blood pressure problem I am having.
I know that my diagnosis has been changed from Parkinson’s to probable MSA. This sickens me. Not so much because it will shorten my life; but because I won’t be as lucky as my brother was in having a sister to take care of him. I will go through this alone with God beside me; which means I am truly not alone.
Life has not been a bowl of cherries as of the past few weeks and I am grateful that Spring as officially arrived and I can get lost in my camera once again outdoors.
Oh the valleys we travel through on our way to heaven.
Maybe I shouldn’t admit it; but I am a little afraid when I go out in public to places I am unfamiliar with. When I moved to Florida years ago; I moved to a city by far larger than where my home town is that I reside in.
Everywhere I went; I saw a variety of people that I was not used to seeing. I saw many cultures. I saw homeless people. I saw purple hair and long hair, different clothing styles. Maybe I should change the word afraid to not knowing how to react, or is that a stupid phrase also.
My brother and I learned that we should not go outside in the dark of where we lived because there were rat snakes roaming about. I am sure that they have their purpose in this world; but considering the great inner fear of snakes, I didn’t care if they were rat snakes or garden snakes; they were snakes and I obeyed.
We really get used to ” our area”. When we live, work and play in the same surroundings, we get comfortable. When you venture into a new area and don’t have that comfortable feeling and we see new things and people; we don’t know what to think or how to respond.
I think this is me so I will erase the word afraid and not knowing how to react to; I need to broaden my horizon in culture. I have been way too sheltered in my own little corner of the world.
God placed a lot of countries, cities and towns on our planet. Along with this comes culture, different foods, interests and lots of learning for us. I remember one day while living in Florida, my brother and I went to a gas station to put fuel in the car.
I didn’t get out of the car immediately because sitting beside the pump was a big trash barrel and going through the barrel was a homeless man. I glanced at my brother and he was staring at the man. I stared along with him. I had never really witnessed a homeless person before; only read about them in the news.
As I watched him, I started to take his place in my mind, and my feelings of wonder turned to pity for him and then I found myself asking what could I do to help. Suddenly I was anxious to get out of the car and pump my gas. Afterwards, I handed the man a twenty dollar bill and told him to have a good day. He smiled big and shook my hand until I thought my arm was going to fall off.
I had a swelling in my heart. I had helped someone else instead of thinking of my usual thoughts. It felt good. It even seemed that my brother and I had a better day than ever. Our spirits were lifted. I had torn down the uncomfortable wall and opened myself to something I had not dealt with before.
I have since then studied culture much more. Learning of rituals and habitats of others is very fascinating. Beliefs others carry is a great learning experience. God sure did an awesome job at placing so many different people under one big, blue marble.
I look at life different today just from that one day years ago with my brother. Now with my illness, I am stuck in my comfortable surroundings; but I seek out what others are doing, how they think, are they hungry or cold; when I am able to get out from under my own roof.
Right here in my home town there are people in need. People who are hungry or cold, who need us. They may need a dollar or two or a meal from McDonalds and I am sure they need a prayer said for them as much as we need prayers said for ourselves.
So in conclusion; we need to step out of our comfort zone. We need to quit thinking of ourselves. We need to look for others who may look different or eat different but realize they need the same things as we do. To be cared about, to be loved, to be noticed.
I will never forget that teaching lesson from so long ago, sitting at the gas station, waiting to pump my gas and the man I helped. How it made me realize how lucky I am in life, how blessed and how much better I felt; helping someone.
Writing this has immediately taken me to the thought of beauty. I think I am going to use my camera to not only take beautiful nature, but to capture, or try to, the beauty inside each heart I pass.
The photo below is at my class reunion. I am the one on the bottom second from the right
“This bouncing back and forth. Keeping my faith. Thinking everything is going to be alright. It’s just too much!”
” I understand what you are saying. I play this game every day, sometimes several times per day. It just gets old. I look down at my body. I see the crepe skin, the bags under my eyes. I see the smile try to widen and the reflection of tears welling in my eyes. I see my swollen legs and feet. I feel the sick feeling in my gut.”
The two sit in silence digesting each other’s words. Shame and guilt over the battle of the thoughts. Realizing there is not a damn thing that can be done. No cures have been found and it doesn’t seem enough people really are aware of the need.
Thinking back to the days of bright sunshine. “Remember when we used to walk down to the playground and sit in one of the black, leather seats hooked up to a metal chain? We pushed with our legs. “Remember when we had stronger legs?” Silence.
We felt the breeze brushing our hair and the feeling of freedom and joy. Wow, those were awesome times! “What happened? I don’t get it! It wasn’t supposed to end up like this, for heaven’s sake!”
“Today, our legs swing, but not the way we like. They swing when someone tries to sit me up on the edge of the bed. They swing and feel like a wet rag when they believe I need to get up and take a real bath.”
“Why don’t people just leave us alone? Can’t they see we are humiliated by them having to witness what our bodies can’t do any longer? Damn it! Just leave us alone. We just want to be left alone and die with some dignity!”
“They love us dummy. That’s why they do the things they do. They don’t understand how we feel just by looking at our faces. They have to read our eyes! How can they feel our pain when we can no longer say a word?” Silence
Letting out a deep sigh, the other follows the lead. “This sucks, you know. We are no longer someone they can count on. They are being forced to ponder on what their life will be like once we are buried and out of sight.
“Yeah, you are right. We ought to feel more compassion for them. We promised them the world and forever, and we are now giving them a view of less time.”
“I agree. Let’s give them a break. Let’s try real hard not to show the pain we are in. Let’s try to show appreciation in any way we can, that they are still sticking beside us, taking care of us. I wonder why they do that? They could just take off and find another life.”
“Dummy, they stick around and do what they do for one reason.”
My birthday is coming up on this Saturday, April 21. I don’t know how many of you followed me while I cared for my brother who died from a rare neurological disease, called Multiple System Atrophy.
I had been a caregiver for many years and never, ever saw a disease so ugly and demanding as this and I am not just saying this because my brother suffered from it. It took everything from him and almost claimed his vision. It left him a vegetable in a shell and was a very painful death.
For my birthday, I am asking you to donate a $1-any amount to help find a cure. I swear to you, you don’t want any of your family members to get this.
Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.
If you would like to let a purple balloon off on March 24th, in honor of my brother’s release from Multiple System Atrophy, please share a photo of you doing so. Thank-you
(of a bird) sit on (eggs) in order to keep them warm and bring them to hatching
Can I exchange a bird and an egg for a person and a life? I consider what I did, in a way, incubating.
My mother passed away quite suddenly. She was a God-fearing, loving and kind woman. She helped open a Women’s shelter here in Warsaw. She and my dad used their own funds and bought an old camper. They gutted it and installed everything needed to make funnel cakes. They traveled to the small-town fairs and sold these goodies and donated all the funds, including the monies to purchase ingredients, to the Beaman Home. She helped people and never let on she was helping them.
His illness lasted about one year and then he passed. I did all I could, but God wanted him worse.
Then there was my brother. A mentally challenged man who had one heart attack and then Multiple System Atrophy hit him big.
Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.
(It is kind of creepy and a little scary for me to read back that definition of MSA. I too, have a neurological disease. My doctor can’t decide if I have my brother’s illness or not. He says in time he will be able to tell. My diagnosis is; Parkinsonism/Dystonia/Ataxia. You can probably understand my fear.)
When my brother had this terrible illness and on top of all the other stuff he had went through, I decided to incubate any time we had left, which ended up being seven years, the general amount of life time on this particular illness.
I paid close attention, more than my dad I think, to every feeling, need and want he wanted. I spoiled him rotten. I made sure he had the best doctors we could find and afford. I fed him healthy foods. I told him many times how important he was to me and how much I loved having him for a brother.
I was drained and tired and physically in not the best shape when he passed; but I wouldn’t trade a moment. I have beautiful memories of his and my time together. I shed tears still, but not as often. He will be gone from my vision four years, March 24th, 2018. I feel like I incubated and watched over his days and nights until he was ready to be born into God’s hands.
March is Awareness month, and I am still praying for a cure. Purple is the color that represents Multiple System Atrophy. The guy on the scooter with the big smile? My brother. The banner at the bottom is where you can call if you are in crisis.
We, the patients, caregivers, families, doctors, scientist, volunteers, medical clinics, doctors offices, Neurologist, all need your help.
I KNOW from experience this illness sucks big-time! I know the exhaustion families and caregivers go through while caring and watching their loved ones. I KNOW the fear that creeps into our hearts as we ask so many questions that answers are not there for. The rarity is here. We need help. We need answers. We need funding and we need it NOW.
PLEASE HELP, PLEASE DONATE A FEW DOLLARS, EVEN A STARBUCKS COFFEE’S WORTH.
PLEASE DONATE TODAY IN MY BROTHER’S HONOR AT THE LINK BELOW.
Oh my God! I instantly get pissed off when I read crap about caregiver abuse.
I posted an article about a family member and the caregiver abuse that was involved. How can people do this?
I know from my own personal experience; being a caregiver for a patient can be very stressful. It’s even worse for a family member to be the primary caregiver.
Caregivers have to watch the illness take over the life and watch to the very end; which many times ends up in a sad situation.
Family caregivers fight with various emotions. They are watching their loved one become less than the person they knew.
Many times there isn’t enough relief and the hours turn into many long and lonely hours.
Sometimes caregivers fight the memories. Why didn’t they do more, say more syndrome?
Then there is the background noise. People suddenly start claiming property or trinkets as if the patient was already deceased.
Thoughts have to eventually turn to the future. Questions roaming in the mind can often be; how will I make it? Why didn’t we prepare burial insurance? Will I have to sell the house? I can’t keep doing this forever; I have a job!
So many questions, so much emotion, and yet we continue to move through the days. Why? Because we genuinely care about the patient or they are our spouse and we love them.
My brother, Al, was no easy piece of cake to take care of. He was mentally challenged in his thinking, especially. Having Multiple System Atrophy and Parkinson’s, kept him even slower with his thinking.
Various times I was screamed at, threatened, verbally abused, and there were even a few times I was hit by him. Sure, the normal part of me said, FORGET THIS CRAP!!!! I DON’T HAVE TO DEAL WITH THIS.
That thought entered my mind. For God’s sake; I am human, but the love I felt for my brother; kept me going on for those seven years. I was blessed with, from God, to be a caregiver.
I actually loved and still love taking care of people who need help, but let’s face it, every day isn’t a picnic. Next month will be four years since I lost my brother to MSA. I wouldn’t change a darn thing I did. I know I did a good job. Well there is my little part of patting myself on the back; if you wish to see it that way.
The point I am trying to make is; not everyone is born to be a caregiver. Some can’t face watching the patient decline. Then there are those who seem to have the gift. They put their heart and soul into it, and care about nothing more than giving good care and comfort.
If you find you can’t care for a person. Don’t continue to do so out of guilt. Bad things happen from guilt. Examples, anger builds, neglect can happen and so many other things.
Except you are not the person to be performing this type of work.. Look at alternatives. Ask for help. Seek Respite care, family members, nursing homes, elderly attorneys. Do what is right for you and the patient.
When I read about caregivers who abuse and neglect their patients, I try to understand how it happened, but the fact is; it happened.
Thank-you for letting me get this off my chest.
Terry Shepherd
A former caregiver for many years
Now dealing with Parkinsonism/ Ataxia/ Dystonia
This past Friday was my birthday. I won’t admit to my age because my mind isn’t in alignment with the numbers yet. My daughter-in-law took me to lunch. We went to Pizza Hut. I always have the buffet and try to only have one slice of pizza along with my heaping salad. My daughter came from out of state for my birthday, and my other son had a cook-out and bonfire planned for me.
Going back in time, three years in fact, my brother had a beautiful Peace Lily delivered to his funeral. I have nurtured it for these three years and enjoyed its company too. Where I lived the past year, was a strain on this special plant. The water and lack of natural light took their toll and at the end of the lease; I had to say goodbye to the plant with a couple of falling tears.
I prayed about this. I know, it sounds silly to pray about a plant; but this plant was a surreal connection to my brother. I could see it, not just vision it. I ask God to please replace the plant and I would dedicate it silently to my brother.
For my birthday, only a month after I had to dissolve Al’s plant, I received the same type of plant from my one son and family. It is beautiful and much, much bigger. It came with one big, white lily opened.
Also on my birthday, along with the many well-wishes on Facebook and from my children, I was leaving my door to go to the elevator, and there in the dead center of the long hallway was something that I knew without a doubt, was a birthday wish from my brother. It was three, heads-up, pennies. You know how I know it was from him? Because each penny was aligned perfect in length and width. It was exactly how he lined up his Hot Wheel cars when he was a child. There was no way, I could miss that as I walked. I picked them up and placed them in a special drawer.
This year, I had an extra special blessing and I thank my children and God for my gifts.
Who I am 