It’s Part of Life

Picture taken by me.

A scene happened yesterday that has tossed like a salad in my head until I decided to write about it so I could get rid of it.

It doesn’t matter who says what or how they say it; I am afraid of dying. I don’t know if it’s because I think I will miss people or perhaps I am afraid of death hurting, or the process to the death. I believe in God,so that makes this issue stupid in my eyes but I’m still afraid.

To get through this, I play or pretend it isn’t happening sooner than later. I tell myself I look pretty good for my age. I try to ignore those aches and pains of arthritis. I place most blame on my Ataxia for being tired. Get the picture?

I have this close friend who obviously wasn’t brought up with the manners I was.I was taught to not say anything if I thought it may hurt someone’s feelings. Well we are good enough friends, that most of our conversations are more straight forward and this talk yesterday was just that.

We were comparing how we have changed through the years and the words spewed out at me. “You have changed. You have wrinkles and your hair is thin and your skin is crepe. You’re old!” Boom, instantly I was hurt.

Hurt probably because it is truth and since I am afraid of dying, it stung. I tried to defend myself but I heard, “Well, it’s the truth.” I got back by saying something truthful about my friend that I probably wouldn’t have said in case it caused hurt feelings.

This is just so darn stupid. I know that I am going to die. We all are. I can be there for anyone who is ill or dying but my own aches and pains can cause me to go to pretend land.

I don’t know what I should have actually done or said but today, those words are still haunting me. Let’s face it Terry, you are aging. It’s part of life.

A Letter to My Brother

Dear Al,   What makes it happen? I am going about my day and then you enter my mind out of nowhere. Suddenly I sit down on the floor, feeling exhausted. I wasn’t tired before so now why? Am I living over that terrible day?

I can see your face crystal clear. The house is quiet. I made myself get out and visit a friend today. I thought the day went rather well, considering it is Sunday. Sundays are still hard for me.

You and I used to climb in the car and just go. You would chatter and I would drive. You wanted to hunt things that you liked. You loved to eat out. Yes, Sundays are very difficult for me still.

I came home and fixed supper. I didn’t care for it at all. I tried a new canned food. asparagus, yuck, terrible. I had tried it once before, fresh and grilled outdoors. I loved it. I had a terrible time swallowing it, but food is limited so I made myself eat it.

I was walking through each room, looking for anything I could pack in a box. The truth is most everything is wrapped and packed now. I am down to what I use every day. I walked into your room and looked at all the boxes, then it happened.

I can still smell you. Your scent lingers in this room. I can picture the air mattress and hear the motor running. I look at the now invisible head of the bed and I know exactly where your head rested. I can see you so clear. I can still hear your voice, pleading me to tell God to take you home.

My gut starts aching, and my eyes feel warm with tears. Oh how I still miss you. If anyone thinks for one second that my moving will aid in me forgetting about my brother, they don’t know me at all. I will take him with me, I will never forget my dear brother. I can see the over head table at your side. I see your cars lined up on your bed as you requested.

I see myself feeding you sherbet. I remember you liked the rainbow sherbet the most and how sad it was for you and me when you could no longer swallow it. I remember how I sneaked baby food into a grown-up bowl and how many times you looked at me. I knew that you wondered what in the world I was feeding you, but you and I pretended that it was better than it smelled and you knew in your heart I had no choice but to feed you this type of food.

I can see you at your funeral. You were dressed in your favorite coca-cola pants and shirt. You were holding your favorite car and you were wearing your favorite coca-cola hat. You weren’t smiling at me though. The flag with the Coca-Cola emblem, which Al Forbes got for you cascades over you.  You looked peaceful and yet I felt you weren’t with me. Maybe you were standing above me, holding me up so I didn’t fall apart. You knew when you left you would leave a huge void in my heart which remains still today.

How many times will I repeat myself dear brother? How many times will the words, I miss you so much bud, I miss you so much, come out of my mouth. Do you hear me? Can you feel my heart busting at the seams out of pain for you not being here with me? I know, I realize you are happy now. MSA is out of your system, but I am selfish, if I could only see you one more time. I hate MSA with a passion. I have written a book about you bud. It is about you and Multiple System Atrophy. I want to share it with others so they won’t be as fearful as I was going through the many stages you went through.

I got up from the floor and stand looking around, tears still forming. I turn the lights off and shut the door once again. I miss you bud. I can’t wait to see you again. Love, sis.








tree trunks 7

Information About My Brother

Information About My Brother

Today is very hard for me. It seems to get harder the longer the day goes on. I keep wanting to go check on him, or turn him on his side, or change the TV, but I can not.

His funeral is this coming Thursday. Visitation is between the hours of 9-12am. The funeral begins immediately from noon.

To tell you the truth I don’t know if this is something I should be doing or not doing, but I feel so…

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Information About My Brother

Today is very hard for me. It seems to get harder the longer the day goes on. I keep wanting to go check on him, or turn him on his side, or change the TV, but I can not.

His funeral is this coming Thursday. Visitation is between the hours of 9-12am. The funeral begins immediately from noon.

To tell you the truth I don’t know if this is something I should be doing or not doing, but I feel so close to so many of you, I am holding each of your hands next to my heart.

Here is the information of where he will be in case any of you are wondering.



Redpath-Fruth Funeral Home

225 Argonne Rd, Warsaw, IN 46580
  • Cross Streets: Between E Jefferson St and E Market St
(574) 268-0225

Thanks For Letting Me Blabber On

My friend left this past Wednesday. I did alright, I didn’t fall apart. Even the next day I did good. I did so well I didn’t even need to take the stress reliever medicine. But the next day was Valentine’s Day.

Maybe without wanting to admit it, I felt a little left out of the over-rated love day. All I heard on TV for days was what men were going to buy their sweethearts. Flowers of your choice for any woman’s taste.valentinered rose

All I know for sure is I started sinking inside. With all the snow still lingering and the news of more snow storms coming tomorrow I started becoming sad again.

Yesterday I spent almost all day in bed. I napped off and on, but the sad part I was recognizing was I just wanted to be buried under my covers and as far away from Al’s illness as I could get. I would get up off and on and go check on Al.

He hasn’t been very responsive as of late. The illness continues to leak out of any orifice it can find. His eating is down to about a half of a jar of baby food at a time. His eyes will follow me, especially if I have the blue bowl in my hand. He knows there is ice-cream, well sherbet in that bowl.

We had to take him off of ice-cream and switch him to sherbet as he choked too bad on the ice-cream. The more I looked at him, the more I didn’t want to get out of bed. I didn’t want to do anything special to make me look better.

I remembered when my friend was here she actually had me rolling my hair and putting make-up back on. I did that too the day after she left, but before I knew it; the desire left.

My girlfriend had been calling each evening and she called my yesterday morning announcing she was returning. She came late afternoon and I was already a tense mess. I was ashamed that I was still in my house robe but yet I didn’t seem to have the energy to actually get dressed or even care.

I had to break down last evening and take one of my special pills again. I was fighting it so hard. I just didn’t want to take it. To me, it is a sign of weakness. Too screwed up to fight these feelings I was forced to lean on the little pills.

I don’t know why I allow or let myself fall into this trap of being so sad and depressed. It isn’t even me that is sick, it is Al. I look at him laying in that bed of his and I think, Wow, look what a trooper he is. Staying in that bed for months and yet he never complains. But here I am; able to walk and move around and I am feeling so low.

I then kick myself in the rear for being such a big baby. How and when did I let his illness become mine? I am my own worst enemy. I take on others feelings as if they were mine. The worst part is no matter what I tell myself I don’t stop. I let myself get too emotionally involved. Maybe it is because he is just not a patient, he is my brother. Yet, I still need that little pill to keep going.

My friend said she will see how Al is, and if there is no change, she will leave Tuesday. It is alright. I can’t tell her what day he will pass. I can only tell her that Al has hours to days as the nurse says and just wait. I realize my friend has a husband and a dog and her life to live. I don’t want her here waiting for something that may not happen when she is here.

Yet, if he passes when she leaves I, well I don’t know what I will do. I imagine knowing me like I do, I will stand tall and carry forth what needs to be done. I won’t break down or have a heart attack, I will do what I have to do.

My mother and friend have always said I am a survivor. Maybe I am, but I feel anymore that if something doesn’t break soon I am going to temporarily go nuts. I have made it for seven years taking care of family, so why now am I not as strong as I used to be. I don’t know most answers anymore, I tend to just go with the flow or hide under my covers.

Daily Prompt; Close Call, DP, Daily Prompt

Tell us about a bullet you’re glad you dodged — when something awful almost happened, but didn’t.

Photographers, artists, poets: show us CLOSE.

I know this is personal, but it has been a few years back, so I can speak about it more easily today.

It all started when our Father passed a way. Hurt feelings, money turning from a useful tool to Satan‘s spawn, sadness, jealousy and anything else I have forgotten to add in here was the toy called destruction.

Words I had never heard prior to Dad’s death I was hearing. Actions among family and friends shocked me. Being together held by only a school glue came apart at the seams and family and friends scattered.

Even today as I will recognize my father’s passing in a few days the hurt is buried so deeply that some of it still remains unhealed. There are still names and phrases that can send me from thinking about Al and myself being a caregiver to a frightened child. Standing and shivering as if I am on the outside looking in through snowflakes.

And so it continued, off and on throughout the years. And then there was a day when I answered the doorbell that a delivery man stood standing asking if I was who I said I was. Once he was confident he handed me an envelope.

Of course I was frightened in the beginning. It is just normal to worry what this was all about and what did I have to do with any of it. It was a letter from the courts. A family member was taking me to court to try to take Al a way from my care.

Oh talk about being sick. I vomited, I stressed, I worried. I prayed but I didn’t wait for his answer. I continued to become more frightened as the day neared.

Then it happened, the day, the hour, the minute arrived. I found myself on the stand swearing to tell the truth. I had prayed as I walked to the stand. Dear God in heaven, don’t let my fear show to this stranger holding my life in his hands. Let me speak with confidence.

The drilling started. Questions flew from the smiling face. Answers came from my own mouth. Everything was happening while I stayed in a daze. Other comments were made and heard and then the end came.

The judge looked at me and said, ” This is utter nonsense. My time has been wasted. You, Terry are a wonderful sister and a good care giver. Any fool would not even try to remove him from your home. Case dismissed.”

I think I invisibly sunk to the floor in relief and tears. I went to where Al sat crying so afraid he was going to have to be removed and I hugged him. As I hugged him I said, ” It’s alright bud. Everything is going to be fine. God was taking care of this whole thing. Let’s go home.”


Chapter 16

From the point of Thanksgiving until December 1 life spun in circles. I didn’t see Al in this time frame. In fact I didn’t see anyone. I worked my job and when I wasn’t there I was with Dad.

Dad and I  had quite a few talks about things kids don’t usually…

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Chapter 16

From the point of Thanksgiving until December 1 life spun in circles. I didn’t see Al in this time frame. In fact I didn’t see anyone. I worked my job and when I wasn’t there I was with Dad.

Dad and I  had quite a few talks about things kids don’t usually discuss with their parents, but Dad knew he was dying. He talked to me about Al and he discussed his personal will with me.

We didn’t do anything when I was with him. I talked and he was quiet. I gave medications and the only time he would eat is when I brought him egg drop soup. His sister dropped by more often. She and B would spend time chatting and I stayed by my Dad’s side.

On December 1, Dad was in so much pain. He couldn’t sit still. I was constantly changing him from the chair to the bed. There wasn’t a position that was remotely comfortable for him.

He finally laid down on the bed. I didn’t even think for one second if it looked bad or not. I laid down on the bed beside him and placed his hand in mine. He quieted down and for about fifteen minutes we lay there with me telling him how much I loved him.

His eyes were closed but I knew he could hear my words. Then he opened his eyes and they became wide and then they closed and he took his last breath. Oh Lord, I will never forget that moment and  five years later, I still re-live that moment over and over.

I got off the bed and went to tell his sister and B that he had passed. They had not been in the room with Dad and me. They were in the bedroom across the hall chatting. When I told them they  both said,”really?”

They got up and went to where he was and told him they loved him. I never felt so alone as I did at that moment. It was up to me to call the funeral home. I made that dreaded call and went outside and sat in the swing and smoked. Crows filled the trees. Their chatter was so loud and when I looked up at the trees they were black in color from so many birds.

As quickly as they had come, they left. The funeral home came and I could not go inside. I stayed out until Dad was removed from the home. I was so thankful to the parlor as they helped me decide things. Who was there to call was one thing.

Dad’s sister’s husband, my uncle volunteered to tell Al and our half-sister. While the attendant and me were making decisions I don’t know what happened to B and the sister, but suddenly they appeared with Dad’s wallet and they had emptied it.

I was in too much pain to notice or think twice about what they had been up to. I didn’t even mind that Uncle was going to tell my siblings. The dust settles though and you learn of what was happening around you once your mind becomes clear.

Considering Al is disabled with mental challenges I would have made the effort to go to him in person and tell him the sad news about Dad, but instead the Uncle called Al. This had to be the coldest move ever. I can only imagine how Al felt getting a phone call stating, your Dad is dead.

Through the years of caring for Al he has told me how awful he felt. He didn’t know what to do. My heart still aches at the crappy way in which he was  dealt the news. What was worse or just as bad as that the month prior to Dad’s death Al and our half-sister were not allowed in B’s house. Neither of my siblings were given the chance to say goodbye or settle any last thoughts with  him.

I try real hard not to dwell on this topic today as the pain is instantly resurfaced and I find myself becoming depressed for a few days. That afternoon of his death I went to the funeral home and tried to make plans with the attendant. My Uncle kept trying to take over and make the decisions. Finally the owner of the home asked my Uncle to please remain quiet. It was time for the eldest child to take care of matters.

I can remember the looks on their faces as this task was taken out of their hands. They were not very happy. I did my job. I let the owner walk me through the steps. I went to my daughter’s home for a few days.

I wish today that I had handled things differently. All I can think of was my brain was fogged. I was moving out of habit but not thinking. Poor Al and the sister didn’t have me around or my support. I am so ashamed of not being there for them. I  was being led around hand over hand and questioned nothing.

The funeral came and the burial was over. I was made Executor over the estate and had plenty of work to do with this. I checked in on Al daily. I saw our half-sister much more often.

One week after we had buried Dad, I received a phone call from Al’s family doctor. He was letting me know that Al had left his job and driven himself to the doctor. Al was having a heart attack.

Up to that point my mind was on the continuing path of how life was before Dad’s death. I was going to get Al an apartment where disabled adults lived. He would continue with his job and routine that he was used to.

This caused a knife into a bubble effect. Our lives changed at that moment and never went back. We were creating a new path in life, with gravel instead of paved. Big pot holes and rather large bumps.