Humpty Dumpty Symptoms

Doctor appointment today
A place where he gets his way
Tells me all I should do
Sometimes makes me go boo-hoo
I tell him I do the best I can
His look can say exactly when?
This illness causes me weight gain
My gut reminds me of a slow train
i tell him I walk as far as can be
But then I end up on bended knee
I will take a way his good advice
I will gather my thoughts like little mice
I will tell myself I will do better now
And then my illness will have a cow
So what can I say
On this hot, humid day
I will give it my all
And humpty dumpty not fall.

Written by my feelings,
Terry Shepherd

 

Hello Dear Brother

Hello Dear Brother

I ride your scooter, you probably know
I use the walker, like you did bro.
I have a cane as you did too
Sometimes dear brother, I see me in you
You had an illness called MSA
Maybe I have it, some docs say
I have your Parkinson’s, no doubt of that
I tend to fall just like your past
People say this can’t be passed on to me
But my symptoms are very hard to flee
If you hadn’t gone to heaven so soon
We could share these scenes without the doom
I’m going to see your neurologist
The one who gave the song of bliss
He’ll ask me questions that he asked you
I’ll remember your answers that rang so true
I sometimes feel better because I know
You’re walking with me, every step I go
I feel so close to you these days
Because I resemble your MSA ways.
I love you brother, stay near me now
Because it is possible I’ll have to take that vow
To keep strong, and hold onto my faith
Just the way I made you when you paved your way
I’ll ask our God to guide me through
Just like the way I prayed for you.
And if the day comes I have to leave
Keep your promise and save a seat for me.

Written by,
Terry Shepherd

Crawl Into Bed

I don’t know why my brain insist I wake early in the mornings. Being retired means sleeping in. Perhaps my brain thinks I am still a young kid. I know that my mind and my body do carry on different conversations.

I rise before the daylight shines. I force myself to go back to sleep, only to awake an hour later. I hear the birds singing, which I do love to listen to. I sit up in bed and look around. I ask myself, what am I going to do today? There is many hours that lay between crawling under my bed covers again.

Part of me feels a peace. No stress slamming me is a nice thing. I think it is more about being tossed out of my comfort zone. That seems to be an issue with me ever since Al passed away.

I got used to being in demand. Al would honk the bike horn sitting on top of his bed side table, and I would go into his room and do what I could to help him. I remember him requesting me to start the movie The Christmas Story, over and over again. Still today, I can’t watch that movie, but some day I will.

I remember him asking me to help his pain. There were baths to give, bed sheets to change, meals to fix, feeding him, cleaning him, talking to him, watching TV shows together. He took a lot of work, but you know what? I didn’t mind at all. I knew he needed me.

Perhaps I have this illness that I am not aware of, which has a name, but has not been assigned to me yet. I bet it is called, Stuck in the Middle. Somewhere between seeing a future and seeing the past.

I talked to my daughter briefly last night. I got the feeling that she and many others believe I should be on cloud nine, as I am now in my own place. I am able to make my own decisions, go when I want, return when I choose, but something is missing.

I still feel weird inside. The truth is, I think I am done. I took care of so many patients and I took care of my dad and brother. This was my purpose here on earth. Now, I can’t work because of this Parkinson’s thing. Feeling off balance on my feet is a big issue in my life.

It has forced me to become part of the system. It forces me to remain in one spot. It keeps me from becoming better in the finances department. I feel like I don’t do anything but get through each day. I wait to crawl in bed.

I miss the past, I don’t see a future. I want it over. If I can’t have a better income, if I have to wonder where my next week of groceries are coming from, I am not interested. I know that sounds hmm, cold? uninterested? I guess it does, but these are facts I live with daily.

I have lost my purpose. Yes, that’s what it is. I want what I can’t have. I want my kids and grandchildren close to me. I want to be needed again. I think about volunteering at a hospital, but right now, those patients seem like strangers to me.

I do enjoy my camera still. I do love my painting, but to be very honest, the motivation is gone. I hate having to force myself to want to do these. I wish I would change. I can come out of church and be so happy that I am alive. I see light where there was darkness.

I am still loving helping the MSA patients, but I wish I could help in person, rather than through a black screen and keyboard. I still love writing poetry. I can see that I still enjoy some things in life, and this is a good thing.

But what is wrong with the rest of me? Why in the world would someone, anyone want to be stuck in neutral? I don’t know, I don’t get it nor understand it. I will get through the day. I will putter around my apartment, and then I will crawl back into bed.

MSA/ Parkinson’s/ My Brother/ Family

Who knew that my brother Al’s illness would make such a huge impact; his death. I have my MSA page, which hopefully allows patients and caregivers to come find a smile or maybe get a question answered, or just feel comfort in being in surroundings of those who understand.

I teach Hospices or people about MSA as well as I can. I try my best to be there for others, plus it lifts my own spirits in my days of not feeling well.

Last week, I was approached by a Doctor who wanted to see if I would show interest in a genetic study.

Dr. Vikram Khuran is the name of the doctor. He had been reading my post on Facebook about the possibility of MSA (Multiple System Atrophy) and Parkinson’s being genetic. There is already great concern for these neurological diseases being environmental.

I had stated that I am the fifth person right down the line to have Parkinson’s. There is also suspicion from my neurologist that I may have MSA/C. My father had Leukemia and Parkinson’s. His mother and her sister had Parkinson’s. My brother had MSA/ P.

This is all pretty coincidental, I would say, so I posted to see if anyone else may have these similarities. Well the good doctor took it one step further and asked me if I could venture any interest in others and myself participating in a genetic study or perhaps testing, or maybe both? Do you know someone who lived around electrical towers, lived near crops that were sprayed with chemicals, ever had water issues? Are there more than one in your entire and extended family with a neurological disease? If so, please think about emailing the doctor, expressing interest in this study.

I heard this evening from the doctor that there is much interest. I had made another post informing patients of the doctor’s wishes, and patients are responding in a very positive way. I am just thrilled to pieces.

What if this is the answer? What if this turns out to be a very important key or even better breaks that secret bank of what causes these diseases? Oh, how my mind races and I thank God for allowing me to be my brother’s sister, caregiver, and a huge part of MSA.

I promised you Al, I wouldn’t give up. I promised you I would help find or be a part of a bigger project to beat this beast( as you called it). I can’t admit my heart still doesn’t ache for you. I have to say, I think of you every single day; but maybe, just maybe, Alvin Miller, there is going to be a  positive out of this negative disease.

Below is a photo of Dr. Vikram Khuran.

Here is a link to speak a little about him.

Neurologist Vikram Khurana brings a new perspective to Parkinson’s disease research

 

 

WE ARE FAMILY

We are family
Brothers and sisters you see
MSA is the link
That almost put us on the brink
It brought us all together
To ward us from this weather
We shall connect in soul and heart
Nothing will ever tear us apart.

Written by,
Terry Shepherd

https://www.facebook.com/terry.shepherd1

 

If you or someone you know may be interested in participating in this genetic study; the doctor would like you to email him at; vkhurana@partners.org.

 

 

 

Chapter 17

My mind wasn’t catching up to what was really happening. I had been visiting Al and trying to concentrate on my job. I couldn’t get a handle on the fact that our Dad had died the week before.

Now I had this estate to take care of and the phone call from the doctor put my mind at a slow halt. What was I doing? What was I going to do? I immediately went to the hospital. I just couldn’t believe Al drove himself to the doctor when he was having a heart attack.

But I have to keep in mind that he was mentally challenged. All he knew was that he was hurting. Once I got to the hospital it was confirmed that they were transporting him to Fort Wayne hospital where there was a  heart floor.

I waited with Al until the ambulance came and then I stopped at the gas station so I could buy more smokes. I was a nervous wreck. I thought my head was going to explode. It was just too much at the wrong time.

I sped all the way. I beat the ambulance by a few minutes. Once I registered him they prepped him for emergency surgery. It was after he was announced alright that being his sister was not good enough.

Here was a mentally challenged adult who had always lived with our parents. I was not his legal guardian so I fought for everything I wanted Al to have. After a few days he was dismissed and I was allowed to take him home.

I ended up spending that night but still I was thinking I will just keep a good eye on him. I will check on him every day. I can do this. As I spent more time at the house I discovered Al had such a good routine going that he didn’t have any decent food in the house.

In the freezer was seven boxes of generic breaded chicken patties. You know, the ones that you aren’t sure if there is really any chicken in them? He also had several packages of hot dogs. It is no wonder he had a heart attack.

As I went through his room thinking I was just going to tidy up, I began to notice things weren’t right. There were health issues here. Ever since Mom had died, Dad never opened the house again. Central air or heat was on all year round. The windows had not been opened in seven years.

I found white mold growing inside dressers, under the sink, on several floor moldings. I am a clean person and seeing this scared me for Al’s health. I went home and got some clean clothes and decided to spend a few days since I only worked Friday through Monday mornings.

Everything Al did was on routine. If his routine was messed up or changed Al was lost. He is mentally challenged in the cognitive area. This is the only way he made it for seven years after Mom died and Dad moved on with his life leaving Al to fend for himself. Al stayed with his routine.

He bought groceries on the same day each week. He ate the same food for breakfast 52 weeks out of the year. He packed the same lunches. He drove the same route no matter what the weather was. He went to ball games in the winter. He went to auctions on Saturday nights even if there was six inches of snow on the ground.

On the day that it would have been laundry day I decided to help him out since he was healing from his surgery and so I gathered up his laundry and started to sort. I noticed there were no white clothes to wash.

I went back in his room and asked him where his undies were. He said, ” I don’t have any. They all got holes in them.”

” Well why didn’t you go buy some more?”

” I didn’t know I was supposed to,” he told me.

It was at that moment that some of my fog cleared and I realized Al had been just getting by. I sat down on  his bed and talked to him about me moving in. I wasn’t sure how he was going to take it. He had grown so accustomed to hiding when Dad was home; I wasn’t sure how he would react to a new change and it being a family member.

The conversation was fairly simple. ” What do you think about me moving in and helping you out while you get better? I could help you pack your lunches  and fix your suppers through the week.”

That part must have interested him. Before our Grandma moved to Florida to live with her daughter, Al always went to her home for supper. He told me I could move in. I made sure he was going to be alright for a while and then I went to my apartment and packed a week’s worth of clothing.

Without me realizing I was already beginning to take care of my brother. For a few days I spent my time between taking care of him and cleaning the house. I scrubbed down mold, cleaned bathrooms, swept and opened the windows to get fresh air in.

Al had a doctor’s appointment. I went with him so I could hear what the doctor had to say. The doctor reported that Al could go back to work on light duty. This made Al angry. He was concerned about what his boss would say. All I remember Al asking was, ” What is Scott going to say when I don’t do my job? He will fire me, I just know he will.”

It took a while to get him calmed down so I explained to him that we would go talk to his boss. I had  Al go with me inside to where he worked. I explained what was going on and they were happy to let Al go back to work, even on light duty. Al felt better and the tears disappeared. To celebrate I took Al to Wendy’s to eat.

He had no idea what he was supposed to do. He didn’t know how to order food. He told me he didn’t remember ever being on the inside of a restaurant. I am sure he had been but it bothered me that maybe it had been so long he didn’t remember.

Slowly I taught Al about the other part of life. The fun parts, other than work and sleep. I taught him how to understand the menu boards. I showed him how combinations came with a sandwich, fries and a drink. It wasn’t long at all when I would take him to eat he would stand right up there at the counter and say, ” I want a 2.” The employee and I would chuckle together because she was thinking that he was so hungry he couldn’t order properly, but I knew that this is the part he understood and this was the way he was going to get food.

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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.

Big Bitch Session I Have Given

This morning Al was teary-eyed again. I couldn’t take it. A Saturday when I knew he would do this off and on all day. I didn’t want to be sad, so I got to thinking, what can we do.

Bingo, not too much pain so let’s go out. I asked him if he wanted to eat lunch out and he didn’t say anything. I ask him if he wanted to go to Wal-Mart after we ate lunch and look at cars and then he said yes and smiled at me.

So clean face and hands, clean brief, placed him in his wheelchair, got my basket of needed supplies and off we went, just like Little Red Riding Hood.

We ate at a burger joint that Al picked out. He did real good, considering, but he was more worried about people seeing him spill food and his tremors. I told him to forget them and just keep his eyes on me. I would make him forget the strangers.

We ate, by now no matter what we eat or where we eat, it takes Al about forty-five minutes to eat. After I was done I people-watched. Cleaning him up and loading him and the wheelchair back in-car we headed for the junk store, Wal-Mart. Well I guess not junk store, that is sort of crappy term, but this store has changed. They took out American products and brought cheap stuff in for same prices.

So I got my bag of wintergreen lifesavers. I am so addicted to them. I must have one for each cup of coffee I drink. I just love the combo. Then we went to the toy section. Al picked out a new police car. It is pretty cool if I do say so myself. Oh he was so proud. He held it like a new-born baby.

We left that department and went down to look at these razors I was told about. Someone had told me they sell battery operated disposable razors. I looked at them. They were a little pricy, but my friend said they last a long time and work well. I thought, what the heck, I can only be burnt once, so I bought one.

We were just getting ready to leave that aisle when we ran into an aunt we hadn’t seen for almost six years. She was on one of those electric scooters. I saw her coming and she nodded to Al and then went on by.

My body started shaking. This time I was not letting any of this family get by with their rude shit. I stood in my place and yelled at her as she was getting ready to turn the curve.

“Aren’t you even going to say hello to Al? When is the last time you saw or spoke to him, maybe six years ago?”

She said nothing and went on around the next aisle and then came back. She said, “Hi Al, I wish Jeff wasn’t asleep in the car while I am in here. He would probably want to say hi to Al.”

What? She is speaking to me? She is supposed to be speaking to Al. He is the sick one.

Then she says, “I saw a picture of you Al from Joan.”

Joan is our old neighbor that helped that day I took Al to the fair and needed help getting his brief changed because of small doorways. After she helped she wanted to take a photo of Al. She asked him and he said alright.

I asked,” Is that all you’re going to say to him? You may want to talk to him for more than a few seconds. Your chances are running pretty low.”

“Yes, I heard he is real sick.”

She turns her key back on and starts to leave. As she is moving a way, she says, “well, maybe”

That was it. She was gone out of sight. She didn’t even hang around to complete her sentence.

I was so pissed. I have every right to be upset. I give myself that pat on the back for not stomping my feet, crying and running up to her and shaking the hell out of her asking, “what the hell is wrong with you?”

Of course I know what is wrong. She is still friends with the mean woman who dated my Dad when he was dying. My aunt chose to believe anything or everything that this mean old bag chose to say over her very own family members.

If you have no clue as to what I am talking about, go to my Al’s Parkinson’s Journey and read the chapters. It will explain everything to date.

I thought I was being so cool but Al said, “it’s ok sis, at least she said hi” and then he started crying.

That aunt ruined our whole trip. I was even more fuming. How dare her ignore her sick family member. Forget me, although she has hurt me terribly as the aunt in Florida and the Aunt in Indiana, I will survive. I have been hurt plenty.

This whole things stems from one thing. My Dad told everyone in his family and friends circle that when he died the Will was set up a certain way. Well without going into legal and personal details, Dad didn’t word it correctly and there were a lot of gaps.

I wasn’t going to go explain personal business to anyone. The lawyer and the courts figured it all out and I have Al in my care. Enough said I guess, but what ever happened to support from families?

Is it wrong to accept that life is what it is and not everything turns out the way it was planned? For me, I was the biggest winner of all. I have Al in my care. He is not in a State confinement nor a nursing home. He is with me.

I guess I may or may not have made an ass of myself here at WP, but I get really sick of people, especially family, who think they know it all, and yet know nothing, and they ignore us, Dad’s children. Some day Al will be gone. And who ever shows up at his funeral will be the ones who cared. And who ever does not, the hell with them. I can totally understand why Al spends some evenings crying about no one being at his funeral.

The cards keep coming in for Al. He is being shown that people care. We don’t receive any cards from family, so I tell Al that these cards come from extended family, people who love and pray for him.

If anyone else wants to send a card to him, please email me at

tellmenolies20042yahoo.com

for his address.

Al is in  pain now. I think the trip was a little long and the mishap with the Aunt upset him. We are home now naturally, and I gave him some pain medication for his legs. He is now napping. I hope he is having good dreams.

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Chapter 15

The more ill Dad became the more I was at the home of the girlfriend. I tried my best to be smiling and talk about nothing but it was strained. Dad was fearful that he or I would say something wrong and he would be sent home packing.

Many times I heard B threaten to send him home if he didn’t behave. I felt so sad for Dad. I always knew that he was not one of those take-charge men. Mom did everything. She paid the bills. She made the better money. She was very involved with the city of our home town.

Dad stayed in the background. He had plenty of friends himself. The guys he worked with, and there were some from his church that he hung around with, but Mom always seemed to outshine on most things.

I always believed Dad had issues with Mom making more money and I feel that this hindered him taking a front seat in their marriage. So seeing this woman bully Dad when he was dying broke my heart.

Many times I ate over at B’s house. She was an excellent cook. Her home was spotless. Her dog was cute, the property she lived on beautiful. But she lacked in humanity. Her life revolved around her and we were the tagged children, and Dad was her puppet.

The minister started dropping over at B’s house to see Dad more often. Dad made it a habit to read his Bible after breakfast each day. When the minister would stop by B made a fool out of herself my making rude comments to the Reverend. She would say, “he reads his Bible but he doesn’t follow a damn thing in it.”

I used to want to just walk over and slap her silly when she talked like that. I am sure both Dad and the minister were embarrassed, I know I was. After the visit was over she would pounce like a cat all over Dad. “How can you be such a hypocrite? Reading that damn book and then not living like it says. You ought to just put it a way somewhere and forget trying to look like something you aren’t”

I don’t care if she was right or wrong. She should have never voiced her thoughts to him. I have known our Dad much longer than she has. I remembered a time when he would not step foot inside a church door. He had changed. He needed and wanted to read his daily devotions. He counted on it. Dad did not want to die. He wanted to live. He did everything in his power to keep living. I think he clung very tightly to what he read each day.

Plus, she and I nor any of us have any right to judge another human’s thoughts. Who are we to throw stones when we have not looked in our own glass mirrors first?

I stayed with Dad pretty much through the week days. I went over in the mornings and stayed until after the supper dishes were done, then I would go home. On the weekends I had to trust that B would behave as I worked all weekend long.

Spring, summer had passed and now it was fall. Dad wanted to go to a flea market. B drove and I tagged a long in case Dad needed attention. When we arrived in the parking lot and we were ready to take off B let us know that she was going on ahead. She didn’t have time to wait for Dad who was slow and using a walker.

Dad and I went into one tent and looked around and then he could go no farther. He and I sat in the shade of a hot fall day and talked while we waited for B to have her fun. On the drive home I was very quiet. B talked and Dad listened.

That was the last time I went anywhere with Dad other than his doctor appointments. I am glad I had that time with him. While we waited on the bench our talks began to become on a more personal level. Dad and I both knew he was not going to make it.

Thanksgiving came and it was a nice fall day. Of course I was supposed to be there that day. Who else would give Dad his shots and medications? Who would help him to use the bathroom facilities?

I had a terrible time because I knew that my brother and half-sister were not with us. Thanksgiving Day to me means a day of being thankful. A day of being with family. My siblings were not allowed over. Oh how I hated her for this.

I got a hold of Al and made sure he was not going to be alone on this holiday. I discovered he had been invited by Dad’s sister to be at their home for dinner. For this I was very grateful. I explained to Al how I so wanted him to be with me, but because of B’s attitude it just wasn’t going to happen. I apologized to him over and over and I don’t think he understood or does to this day why he was left out.

The dinner table was filled and over-flowing with a turkey and all the trimmings. At this point in Dad’s life food was the last thing he wanted. He would rather be sitting in the pillow based recliner that we had designed for his body.

When you are dying from Bone Cancer, even a button on a recliner touching your skin can cause great pain. There were many times that I could no longer give Dad a hug. The cancer was eating holes in his bones making him in great pain and very delicate. But this didn’t matter, he had to be at the head of the table. He was to pretend that life was great and the food divine.

If I remember right he ate a small helping of  Turkey and a teaspoon of mashed potatoes. Dad ignoring the home-made chocolate pie told any of us that knew him well that he was very sick.

He didn’t want to stay at the table. He begged me to take him to the recliner. Although B was bitching about him leaving, I took him to his chair. On the way from point A to point B, Dad quietly asked me, “did you make sure Al is alright today?”

I said,” yes he is. He is at your sisters.”

It made me feel good that Dad inquired about Al. Things were changing inside Dad. He was beginning to take stock of what he had done in his life. What kind of father  he been to Al. I think it was eating him up about certain things that had been left undone or unsaid. He touched my hand and said, “thanks Terry for making sure he is alright.”

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Chapter 14

As Dad got worse, Al became farther back in the picture. I liked it better when he was fore most in my mind because he needed looking after. But B. felt that Dad was just a big burden and demanded more and more of my time.

One of the last visits Dad payed to his own home, it was in October. He had the urge to sit on his tractor one more time. B. came along and I met Dad out at the house, Al was home also.

Dad made me go get Al as he wanted to talk to him. It ended up not being talking, it was screeching about how things were not done the way Dad wanted them done. Our half-sister happened to stop by and my Grandma still lived on the property.

We were all getting things arranged in Grandma’s house as she was planning on  moving permanently to Florida to live with her daughter. It was still pretty warm outside and the woods were in full color.

I didn’t know how we were going to get the tractor out of the barn. Dad had tried to climb on top of it but he was too weak. Just then my son pulled in the drive way and I asked him to bring the tractor out.

While my son was doing this B. was in the background bitching at Al because of this or that. I told her, “Stop it right now. You have no right to be speaking to him this way.Leave him alone and remember this is not your son nor your home.”

She gave me a dirty look and then proceeded to start in on our half-sister. It escalated very quickly and soon there was an arguing match in full force. I am so thankful my parents lived in the country. If we were in town the cops would definitely have been called.

Yelling and accusing was going on so long. When I glanced at Dad to see how he was dealing with this he was sitting in a summer chair and his body was trembling. He was so weak and also too afraid to interfere with this fighting.

I probably didn’t handle it the right way, but I told Al to go ahead and go back in the house where he would be safe. Al didn’t hesitate, he left right a way. I walked up between the sister and B. and stuck my hands out in between them. I probably looked like a traffic cop. I told them,” You are destroying Dad. Look at him trembling. You two should be ashamed of yourselves. If you want to argue and bitch, go somewhere else and do it in private. I want this shit stopped now. I will not sit here and watch you all destroy yourselves.”

Voices hushed and the air became quiet. B. was beginning to mumble under her breath and I gave her the look. She changed her train of thought and went to Dad and told him she couldn’t help herself. She just wanted to protect him. In my opinion she could just shove it and go to hell.

After the boxing ring became quiet, Dad went back to the issue of wanting to get on the tractor. My son and I tried and tried to hoist him up but to no avail. Finally I saw a five-gallon container. I went and grabbed it and placed it as a stepping stone for him.

He was able to get on and he sat there smiling. He tried to start the tractor but his legs were too weak to  clamp down on any pedals. Getting him off was even harder. My son and I balanced him and sort of pulled him off.

There was no  more arguing that day. B. had said what she wanted. Our half-sister was done defending herself and inside Grandma’s house. My son left, so all that was left outside was B., me and Dad.

I grabbed Dad’s mail and we all went back to the girlfriend’s home where I helped Dad inside. The day before when I had visited Dad I had brought  over a   toilet commode. He could barely get down on the seat to sit or stand to be wiped.

I had the leverage to grab him this and a walker. When we got inside her house and I had Dad seated and comfortable in his recliner, she called me into her kitchen. When I went to see what she wanted she had the commode in her hands. She made me watch as she tossed it out the back door. She commented or hissed, “No one is going to pretend they are sick in my house. There will be nothing here that represents sick.”

I watched her with intent as she tossed that and the walker outside. I went outdoors and grabbed the walker and brought it back inside. With Dad within hearing distance I played out a short clip of a silent movie.

I raised the walker and pretended I was going to slam her with it. She covered her head with her hands and inside I was having the time of my life. On the outside I was firm-faced and I mouthed to her, “He needs this, dammit, now get your shit together.”

She left the walker alone but put it on the back  porch. I had to look at B. for the first time with sadness. Although I never met her husband who had passed I could imagine the memories of having another man you cared about dying in your home once again. That feeling of sadness didn’t really stay that long, as I knew that someone in her sixties should very well know better to take it out on another human being, no matter how bad it hurts emotionally.

 

Chapter 13

Things at B’s house became more fragile, the longer Dad was sick. The more time that went by the more he wanted me to be his caregiver exclusively. I would be at work and I would receive calls night and day.

Thankfully, I worked for a wonderful family. I had actually known the kids way back when I was a teen. I had run around with one of the daughters. Even if the call came through the  night, I would call my boss and let her know. She would say, “go ahead Terry, run over to him and then come back as soon as possible.” I was running three different lives as caregiver all at once, but I did it. Anytime Dad called, I was there.

By this time the half-sister and Al were completely out of the picture. Al has a routine he follows. It is part of his mentality. As long as he doesn’t have to part from this, he is alright. He went to work. He worked at a linen company and worked from 10am to sometimes 7 or 8pm. It was sort of crappy hours but he didn’t say much. He would come home and eat one of his frozen chicken patties and I don’t know what else. He watched TV and then went to bed at 11pm  each and every night.

I would call and check on him but still not allowed to actually go in the family house. It was one of those situations I was forced to look at as a fight or flight. I thought, as long as I know he is alright, I will let things rest, while I take care of my husband and wife team and Dad.

When I would go into B’s house either to play cards with Dad or be his caregiver, I was always met at the back door by her or the dog. As soon as I stepped into the kitchen she would start in on me.

“I am just so damn pissed that I am with a dying man. Do you know what we did when my own husband was dying? We all got a beer and gave him a beer and we would sing around his bed and get drunk.”

I just looked at her in awe. I couldn’t imagine this but of course I was not and still am not a drinker. I have seen the damage alcohol can do to people. Don’t get me wrong, I am not here to criticize, but in my opinion, I want to know the stupid mistakes I make in life.

I never said anything about her remark and let her proceed to belittle me all for the sake of Dad. She would show me the cupboard full of medications and express how Dad was taking up her kitchen space.

She would show me the partial bottles that I needed to call the doctor on or go have refilled. She would show me her refrigerator and tell me how many dollars she spent on Dad just trying to keep in here what he wanted to eat.

She said she was on a limited income and could not afford to give him whatever without the fear of going broke. From then on I would call Dad on my way over and ask what he was in the mood for to eat, then I would go get it.

As he became weaker he always wanted egg-drop soup from the Chinese Restaurant. That got to be about the only thing he would eat, but it was alright. He would have me feed it to him and we chatted and gave each other eyes for words.

B got bolder as time passed by. She would begin to tell me about their sex life. I hate to tell you this, but I wasn’t interested in Dad and her sex life. For heaven’s sakes, this is my father we are talking about.

After while I wasn’t even sure if she was telling the truth, as Dad couldn’t make it up her stair case anymore, and if she did get him there, she pushed him all the way up the stairs. I was just standing by, holding my breath, waiting for him to fall backwards and topple on her and they both would come crashing down, but it never happened.

Then she began to tell me what a disappointment I was to my Dad. I heard things I had never even questioned in my own heart that I had done to hurt him. I knew that I had disappointed him in some ways. We always want more for our kids than we had and maybe I didn’t produce all he wanted, but I loved him and accepted him for all his faults. He was my hero, I had always placed him high on a pedestal. I don’t feel this way any longer after caring for Al.

She would tell me bad things about Al and the sister. She would complain about my Mom. This used to make me royally pissed. She never even knew our Mom. Mom had died seven years prior. I wanted to tell her off so bad but alas, I couldn’t. I wanted her to be out of the picture. How I thought she was so nice and pretty in the beginning is beyond my own imagination, for I now looked at her as the wicked witch of the west.

One time when I was at work she called me around 1am and told me, “your Dad is wet. If you want him dry you better get your ass over here. I am not changing some sick man.”

I would get up out of bed and make sure my people I was in charge of were alright and then sneak off to the five-mile trip to her house to change him. I would not see her when I arrived. She would leave the back porch light on and the door unlocked. I used to think, why hasn’t someone broke in here and kidnapped the old hag?

After cleaning him up I would race back over to the house I resided in on the weekends. After work ended I would run by Dad’s house and make sure Al’s car was gone. Relieved, I would head home to try to live some sort of life.