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.

 

 

I-Love-You-Wallpapers-5

I Was Told I am JUST a Sister


I hope I don’t take more than one page to get out all I need and have to get out. This morning I awoke to a nice calm morning. But things change as you know. We never quite know what each day holds out to us. I guess that is where we really need to count our blessing other than those big moments.

I was drinking my coffee and talking to some MSA friends on here when the phone rang. It was the Hospice Hospital. The doctor was on the other end of the line. She said that she was going to keep Al another 24 hours as they had made a few medication adjustments and wanted to make sure he would be alright.

This is cool. I would hate for him to come home a mess. So he is coming home tomorrow. The next few sentences out of her mouth began rubbing me the wrong way. Soon I was frustrated then I went from that to plain old angry.

She told me Al was doing real good. She explained how their nurse aide had said he walked four steps and had no issues. This is when I started to become frustrated. Al doesn’t take four steps here at home. In fact he does need to take three steps to get from his wheelchair to the shower chair but he gets very upset because it hurts his legs and feet so bad.

Al looks like he is walking on his heels because of his feet contracting from this disease. I see his heels and they are so red. I do try to get him to continue with this as long as possible because he gets so much cleaner when he gets a shower over a bed bath.

She told me that he became upset and angry over a football game last night so she gave him one of his new medications and that didn’t work; so she doubled the dose and then he became quiet.

Alright, I am just listening and not speaking as she goes on to tell me how amazing it is that he is so good. She then changes the topic to stating she had called Al’s regular Hospice nurse and that nurse tells her that Al really isn’t declining much. She says he is  pretty much the same as when he started Hospice.

I think my eyes probably got big as my daughter always tells me when I start to get upset. She goes from there to telling me that I need to start remembering that she is the doctor and all I am is the sister.

She stated in no uncertain terms that I directly disobeyed her orders to double up Al’s pain medication and then I quit being quiet. I told her that I had went up to almost double the first time she wanted it upped on Thanksgiving Eve. But after I saw how he changed and he started hitting himself and screaming and cussing I was not doubling the dose within an hour as she wanted.

I explained that I did not want to see what damage he could do to himself over this. I asked her to try some other medicine but she was persistent even after Al was beating himself up.

So on the phone she was scolding me reminding me that I am nothing compared to her. Her next blast of words were that he isn’t declining for what he needs to be. She said she was having a meeting this Thursday with Al’s regular Hospice nurse, who already told her this morning that Al isn’t declining and she was 90% sure she was going to release Al from Hospice.

My heart sunk. I know what I see here. He has gone from five days at Day Program down to two half-days because he is declining and becoming weaker. He is almost 90% bed bound except on Day Program days.

He can no longer stand more than a few seconds and when he does it is on his heels because of his feet contracting. He has to be fed liquids and foods about 75% of the time. Last month he could still feed himself most of the time as long as it was finger foods.

His medications have been changing all the time because pain continues to get worse. His entire body is contracting. His head hangs on his chest. You can barely hear or understand what he is saying.

But according to the doctor he is not declining. She said that he will probably have a few more months to live. All of a sudden I was enraged. I felt although I can not prove it that this was to get back at me for not following her orders, since she did make that perfectly clear.

She stated that she would only release him if I promised to her in writing that I would follow all of her orders when he did come home until he was dismissed from Hospice.

All I could think of is I am going to be forced to place him in a nursing home. Why? Because it takes a lot of money to purchase briefs and pads.

They send a case at a time when they send his briefs. He wears two types, pull-ups for Day Program and tab types for when he is home in bed. He also uses quite a few chux pads. The bill is about two hundred dollars every couple of weeks. I can’t afford that at all. I already pay for what ever he needs here at home, food, clothing, anything that Hospice or Medicare/Medicaid doesn’t cover.

She said that she will let me know this Thursday her final decision. I hung up and sat here and almost started crying a pond of tears but I had to leave to go to the pharmacy to pick-up my medications for myself since Al will be home tomorrow I won’t be able to get out as easily.

When I went to the pharmacy the owners and I were talking about it and they told me to talk to the Hospice right here in town. I asked them, ” Why should I?  If Medicare won’t consider him acceptable in another county, they won’t here either.”

The owner convinced me to at least try. Just run over there and talk to them is what he said. I grabbed some lunch because I had forgotten to eat breakfast in the chaos of things. Then I went over there.

I was very upfront and honest. I explained everything that had been going on today and for the past six month history. She asked me if the doctors had ordered gel pain medications and I said no, and she wondered why.

She said from everything I was saying he is declining and they accepted Al in their Hospice care. We hugged and I told her as soon as I got home I would call the other Hospice and tell them the new Hospice information, which I did.

Now I am in waiting time. Waiting for Al to come home. Waiting for the two Hospices to talk to each other for dismissal and admitting. He will still get three showers a week. He will get a nurse in this area for visits. I will even get home maker time hours for me. From what I learned they will send someone out to tidy up his room or something.

So I had no trouble calling the now Hospice. If I had to do it over again, I wouldn’t change a thing. I may be the sister but I know how he reacted to the increase of medication. Even the Hospice nurse that was here was shocked at how it was a negative reaction to the increase of meds.

I know in my heart this doctor is upset with me because I didn’t follow orders, but hey, this is a real person, and my brother. He is just not another case. So I am calmer now and this is good for all around. I made the right decision and as far as the Hospice Doctor is concerned…………she needs to remember why she became a doctor. You just can’t shut up noisy patients at any expense, pain is pain no matter what title you hold.M.S.A badgeM.S.A. logoal and rhino4

Take A Deep Breath


Take a deep breath Terry, relax, breathe deep. Smell the stale coffee!!! I got a call from the lady today who is supposed to start Monday. She started off by stating she had questions.

Oh no! She isn’t going to take the job. She has changed her mind! Just when I was about to relax and enjoy the extra help.

She had questions. You see when she was here before Al was a whole different personality. He got angered easily. He could have a very smart mouth, and there were many times he wasn’t so pleasant to be around if he wasn’t getting his own way. Kind of like a kid throwing an adult temper tantrum.

But the illness changed him. He grew weak and his voice softened. He turned mushy and cries a lot. She wanted to know if he stayed in his wheelchair much. She was questioning exactly what she would have to do for him if I left and went to a store.

I understood exactly her alarm and I explained to her how Al is today. Pretty much bed-bound. Eats in bed, watches TV a lot, sleeps about 16 hours per day.

All she could say is WOW, he sure has changed. I said, “Yes, an illness has a way of getting a hold of a person. You will be surprised when you see him again.”

I don’t think she is 100% satisfied but she did say she was still coming Monday. She just wanted her questions answered. I added that I would be here at first with her until she felt comfortable. I told her I would never leave and just throw her to the wolves. I heard her breathe a sigh of relief.

So I am going to relax, take a deep breath and realize God sent this person, end of story, well I can’t help  admitting that I will feel better once she rings that door bell.

Today Al was cranky this morning. He is having more breathing issues. A labored breathing when he is active in any way. I used to hear it off and on but it is pretty regular now.

The Hospice nurse came today and I did tell her about the incident with the shower girl. I also voiced my thoughts on my fear of losing her and not having a shower girl at all.

I called the local Hospice here in town. I was quite disappointed to tell you the truth. I am still weighing the pros and cons but I didn’t like that they didn’t offer any short-term respite and that they had no Hospice House like Al has available to him now.

In fact the more she spoke, the more I shied away. She told me that if I felt I needed a respite break that bad, she would have him admitted to a local nursing home. My breathing stopped, my heart raced as I quickly thought back to the six months he was in a nursing home.

There are three nursing homes here in town. One is supposed to be high standard, that is the one Al was in, and we all know that didn’t work out at all. Another one doesn’t accept Medicaid, so that is automatically out. The last one is a place where you place people whose family doesn’t want them, or there is no money what so ever. I think you can vision what kind of care he would get.

In fact, it is a proven fact that a few  disabled and mentally challenged people who enter never come out again. This is the biggest reason I keep Al at home. I love him, he is safe here, and he is in his familiar territory, plus he is never alone.

I will never unless I lose my mind or become so ill I can no longer care for him let him go back to a nursing home even for a respite of five days.

I was a little surprised at the fact that the director made the comment that if I felt I really needed a break.

My gosh, I take care of everything that has to do with Al. This includes meals, cleaning, changing clothes and bed linens. Grocery shopping, doctor appointments,lifting, guiding, aiding, helping, rolling him over, finances, and with his illness it has turned into a less than peaceful night so my sleep is interrupted, but I will march on like the woman I am. Not giving in nor giving up. God will help me do this and if I get too weak like I have been of late, he will send help,which he did.

Now, just sit back relax, wait for the help to arrive and smile. It looks at this  point I will keep him with the Hospice I am at.great-light-wallpaper-544979.jpeg Ah, just look at this picture Terry and sit back and relax.

Two Lonely Hearts


He gently laid his hand over hers. Looking into her eyes the two smiled at each other. Both Charley and Iris needed each other. The two came from their children’s homes at about the same time.

Both came from different types of  families and yet here they were sitting in the lounge together. Lap blankets placed over their knees, sitting in too familiar wheel chairs they were waiting for their supper.

Charlie had four kids. Three of them lived out of the area and the one he had been staying with lived here in town. Charlie was an old sentimental man. He laughed hearty and he cried gently. He was a tomato farmer in his day.

He picked from the vines and filling his baskets, standing in the hot sun all day he was tough-skinned but a gentle giant on the inside. His wife had died several years back. Charlie continued to take care of his home until he began to fall.

Low blood pressure and the signs of the body wearing down from age led him to his daughter’s house where he was living before he came here to the nursing home. Now he needed more care than his family could give him. His heart was getting tired and moving from room to room became strained.

His daughter sat with him one afternoon and the two talked about extra care. She explained how she couldn’t give up her job and so the nursing home would have to be the next step.

Charlie understood but he cried. He had been so involved with his family and now he was going to be alone in a building full of people. The day to transfer homes came much sooner than he wanted.

Iris on the other hand came from a different situation. Her family consisted of one child and this son lived over a thousand miles a way. He was a big business man who made time only for himself.

Iris lived in a Senior Retirement building. She didn’t have many friends that were alive anymore. She  had worked in a local post office for years and had been lucky enough to get a good pension.

When she retired she sold her home and moved into her new quarters. She hired a housekeeper that came once a week. The helper cleaned her little place and cooked all day preparing meals for the next week. Once the freezer was full she disappeared until the visit.

Iris’s husband had been killed in an automobile accident  four years before she retired. She was sad but she was tough around the heart. When her son moved far a way she got used to being alone.

She played Bridge with the residents and on Mondays she played Bingo. On Wednesdays she rode the community bus which dropped her off at the local shopping center. This is when she would buy things she needed for the days ahead. Her housekeeper was given a list along with money and she took care of the groceries.

This was a planned life with activities daily. Life was not bad but her heart remained empty as her yearning for companionship grew. Iris didn’t realize that her being alone was affecting her to the point that meals became wasted. Naps were taken more often.

Until one day the housekeeper reported to the front desk that Iris wasn’t doing so well. Iris had a health check-up and a mental clinic was involved. The decision was made that she needed more care. It was decided that her mental well-being was at risk.

Iris was transferred into the same nursing home that Charley was living. Iris wanted to die. Although she had some money left it couldn’t buy what she really needed. She remained in her room many days staring at the television. She let the aids take care of her and she was just living.

Some changes had been made and one morning for breakfast Charlie and Iris ended up sitting at the same dining table. It took no time at all for Charlie and Iris to feel connected. Two lonely hearts meeting three times a day.

One day on a quiet afternoon Charlie wheeled himself to Iris’s room. He sat at her doorway watching her. She didn’t acknowledge him as she was napping. This broke Charlies heart and he knocked on the door.

She looked up at him and put her call light on after inviting him in. The nurse helped put a sweater on her and pushed the two out into the court-yard.

It wasn’t long at all that Charlie and Iris were sharing their lives with each other. Speaking about their spouses and children and how they ended up here in the nursing home. From that afternoon in the sunshine, life was brighter.

Each day Charlie went down and waited for Iris at her door. He escorted her to every meal and when she was sad and lonely he would reach out and  place his hand over hers. The two would look into each others eyes and smile.

Nurse Holding Elderly Patient's Hand

Daily Prompt; No Fair


http://dailypost.wordpress.com/2013/09/20/daily-prompt-fair/, DP, Daily Prompt

Tell us about something you think is terribly unfair — and explain how you would rectify it.

Photographers, artists, poets: show us FAIR.

When I was a young kid, many moons ago, I thought life was not fair. When I had to share my toys with my brother. This wasn’t fair at all.kids Not getting to stay up as late as my parents did and being told to go to bed, not fair at all.

As I became a teen I thought I should not have a curfew. Why did I have to come in by midnight on Friday and Saturday nights? I was almost a grown up. After all, I was 16 now.

The rules at my home when I first got privy to driving was, no teens in car until I had much more experience driving. I thought that was the most unfair. How was I supposed to show off my wheels and the fact I was of driving age?keys

Now that I am considered middle-aged I see a lot that is not fair. Why is it there are homeless people?homeless

Why is it that women who need personal hygiene items, you ladies know what I mean, and yet they are so expensive?

Why is it that we say we have no money and yet money is tossed on lottery, alcohol and drugs?drugs

Why are schools so expensive that parents have to fret and worry on how they are going to pay for those school books?Math Books

Why is it that we spend so many big dollars on classes that aren’t needed in college? Or why is it that you graduate college and can’t find a job?graduate

Why is it that nursing homes, hospitals and health care cost so much when we all know that elderly generally do not have the big dollars to pay for it?nursing-care-model

Why is it that one normal funeral cost at the least six thousand dollars? Couldn’t that money be better spent when we are still alive?funeral

I know there are questions with varied answers to these and I didn’t  post this to get discussion groups started.

It is just that our world is difficult to make ends meet. I see it in my little corner of the world. I am sure you know someone who is struggling in an area of their life also.

Life doesn’t seem fair, but believe me when it is all said and done and we leave this earth, God will show us all the answers.

I can’t fix it. Who am I? Only one person. Today’s problems are bigger than us. I am more than willing to voice my opinion. I am able to join a cause, but alone I can not fix these huge issues.

One Word is All It Takes


It is odd that just yesterday I was talking to my girlfriend about how the laws and courts can take an innocent person and turn them into gray, black and bruised all over. We sort of laughed over our conversation but there was a tiny part of me that knew something like what we were talking about could happen.

Al and my step-sister took me to court. She wanted to care for Al. I tell you from the day I received the court papers until the judge’s announcement I was a wreck. I prayed like crazy but there must have been a huge part of me that was not praying deeply and earnestly enough.

I knew that I was a good sister. I knew that I had done nothing but my very best for him, but knowing the law, strangers who knew nothing of Al and me could be twisted into believing the evil one.

Fortunately God was at work through my weakness. The judge threw our sister out of court and said she was nothing but a trouble maker and to leave us alone. Al was the center of attention and even though it has been a couple of years ago I can still see the movie clip perfectly.

Al screamed and cried. He kept telling the judge, “please don’t make me go a way from my sister. I love my sister.” I am sure God had a huge hand in our case, but the pain has remained all this time. Anytime Al hears our sister’s name his body tenses. It leaves a sour taste in my mouth when I mention her name.

Believe me that name is not brought up in this house, and yet for Al’s sake, when he begged me to get a hold of her and let her know he was so sick, she turned her back on him and me.

So the conversation with my girlfriend still leaves a small scar in my mind and heart today. A bit of fear can and is with me as I care for Al daily. What if he falls? Is anyone going to blame me? Are the laws going to get involved? Will I once again have to prove my worthiness?

My girlfriend bounced a way from that topic and went on with new subject matter. This morning I am watching Anderson Live. I was shocked when one of the guest was a wife who had been her husband’s caregiver. They had been married almost fifty years. She had to attend things throughout the day so was gone for about six hours total.

I don’t know his health conditions but she stated that he was fine when she left. When she returned home he was dead. When she called the authorities to report his death she was arrested for his death.

Her daughter was on the show and spoke about the fear and tears her Mother suffered. Seeing her own Mother in the orange garb and behind bars. Eventually the innocent prevailed and she was released. I didn’t catch how long she was behind bars. To me this isn’t nearly as important as the fact that this woman who loved her husband. Who would lay down her life for him. Who chose to care for him at home instead of sinking him in a nursing home, was accused of murder.

The facts were in the end that he just died. Sad, yes he died while she was gone, but we don’t know when our last breath will be taken. We can not even live like we are waiting for a last breath to be taken from a friend or loved one. We would all be crazy and fill up the nut houses and be overflowing.

I felt so bad for this wife. Her husband died, and she was tormented and accused. She suffered terribly and was so scared for her life. Finally now that she has been released she can begin to mourn for her mate and begin her healing process.

I couldn’t help but think back to the incident with our sister and the conversation of  my girlfriend last night. Life is never guaranteed, and God wants us to definitely on him for help and release and justice.woman arrested

Daily Prompt; Back To School


http://dailypost.wordpress.com, DP, Daily Prompt

If you could take a break from your life and go back to school to master a subject, what would it be?

Photographers, artists, poets: show us MASTERY.

The very first thing I would do if I could go back to school is forget the opposite sex. Yes, I mean guys. Yes, they are nice, but when you are a teen, a girl, guys can really get in the way.

In the way of learning, of exploring new interests, working hard, getting better grades. Oh I didn’t do bad in school. I got A’s, B’s and C’s; but what if I would have concentrated more on my future, instead of living for the moment.

I would hit those books. My nose would get so into them, it would not have time to nose into other people’s business.worm

I would dress more casual instead of thinking how I need to dress in order to get the guys look at me.daisy

Yes, you guessed it, I was boy crazy. A normal teenager looking at boys any chance I had.

Getting fair grades, but able to do better. More interested in how short I could get by with my length of dresses and skirts.

It all sounds crazy when I look back now, but it is so important for teens to feel like they fit in. To be accepted can make it or break it for a young person

I never got in any trouble when I was growing up. I never saw the teacher’s paddle.paddle_01 I never  had to sit in the corner with my dunce cap on.dunce_cap

In my adult life, I have been to college to take some classes to see how much I have slipped through the years. I have entered the Nursing Program twice.nurse

Each time I was part way through Al would end up in the hospital.

You can’t miss many classes. When I spent most of every day sitting with Al I would drop out and promise myself to go back later.

Later has never came and now that I am nearing an age where employers would question my alertness and good judgement, I will settle for what I have learned.

Which is hands on hands training. Real patients, in real home situations. Getting involved with patients on a more personal level, mixing it up with involvement with family members.

Without my hands on training I may not have been able to grab a hold of the opportunity to care for Al at this stage of his illness.

God knew all the time that I didn’t really have to have that diploma from a college. He knew I would struggle to pay back those expensive school loans.

So he did what he knew was perfect for me, taught me as I lived life. Isn’t God fabulous? Isn’t it amazing how much he knows and yet we do everything in our power to solve our own problems first before finally turning to him for help.

Hello, I Am Terry


beating heart

I feel a little like a ball of yarn this morning. Strands of yarn unfolding in different directions. Not really going anywhere, unraveling on the floor to be stomped on or touched for softness, or maybe admired for colors.

I get pretty close to writing my true feelings in my postings but today, I feel like the only way I can put my strands of yarn back together is to be slow and smooth, sorting out thoughts. Winding the yarn around my soul piecing each strand smoothly so as it looks like it has never been touched.

You all know from reading my blog that I take care of Al. I am not only his caregiver, I am his sister. I would say that although he and I were not allowed to bond when we were young children, there has always been a part of me that has been very protective.

I don’t know when this instinct or learning behavior kicked in. I do remember telling kids on the school  bus to leave him alone. Al wanted friendships so bad when he was growing up. More intelligent kids picked up on this too easily.

They would pick on him on the bus. Make fun of his name, which was popular back in the times of Alvin and the Chipmunks. They would mock his name, knock his lunch to the bus floor. Al mistook the laughter for acceptance and this broke my heart making me very defensive of him.

The laughing still haunts me today as I write this. I can vision these rude kids sneering, covering their mouths and yet getting more attention by their own silly actions. Kids are kids right?

I don’t believe that children who are brought up to respect each and every soul act this way when they are in grades 4, 5, and 6.  My face used to turn red from anger as I knew what the purpose of their mockery brought.

I became the joke, the butt joke also on the bus, but I didn’t care. No one was going to get a way without hearing what I thought of  their actions. It sort of escalated from that point on.

Although I was not involved that much with Al when we were teens I always had that guard ready when it concerned him. It feels so common today for me to still have my guard and full-bodied shield up and ready to attack if someone says or makes rude gestures towards him.

I have had to work very hard at understanding the other person’s view. Not everyone is comfortable with a mentally challenged human, I get it. Wheelchairs, oxygen tanks, lack of control over words mouthed, body parts moving is not something we deal with in everyday life.

I would rather see a very young child come up to me and ask me questions about Al than the comments and gestures made by adults. I feel children are innocent. They are curious, they want to know. Adults know better to act in any way other than respectable.

I have come to the conclusion that people sneer or act rude because they have issues of their own they can’t deal with. Seeing someone like Al has all of a sudden thrown some out of their comfort zone and forced them to see that our lives are not actually beds of roses.

I have dealt with so much through Al’s illness. I have had to face the fact that our Dad was not the hero that I once thought he was. Although I love him dearly he made mistakes with Al. Errors that have been carried in Al’s heart to this very day.

I have had to come to terms that Dad’s lonely heart can be more powerful than protecting your own children. I have had to take on the sorrow of losing friendships and closeness of ones I used to be so glued to because I am caring for Al.

I appreciate the fact that so many want the best for me. People want me to be happy and live that  normal life. To love and have fun. Laugh and be free, but when I did not choose this route the roads did split and for this I feel sad inside.

I believe that the brother sister bond goes much deeper for me than the mere fact that we are siblings. For me, I realize Al and I are lucky to be where we are today. With the fact that I was passed around sexually when I was two and three, and the fact that Al was not treated as one of God‘s special babies, we have gone through much to get here today.

I believe the bond between my brother and I is survival. An intense need to be wanted and accepted in life. Today I hover over him like a hen with chicks. I want to do everything in my power to make him comfortable. For quite some time I have gone over board trying to get smiles from him.

It is sometimes difficult to watch him struggle to brush his teeth or let him feed himself. He needs to retain the independence he so deserves, but for me I see the struggle and I want to jump in and rescue him.

It is very difficult for me as it is or was for anyone else that is watching a loved one die. Every time a comment is given to me that lets me know he is declining, I have to deal with this alone, and yet still put on my happy face when Al is in my view.

If I didn’t have my blog here I don’t even have to wonder if I would be as mentally healthy as I am today. I know I would not be. I need your friendships. I need your words of comfort. Am I supposed to be needy when all I have to do is go to God and say help me?

Maybe, maybe not, for me I know God is with me at all times. But I also realize that I am maybe a more needy person than others. I require friendships and words here on earth too. I can’t seem to help it, but I do accept that this is who I am. I don’t even want to go back in time and analyze that this or that is why I am today. I just know that this is who I am.

When I took that beautiful photo of Al and Rhino last night it represented more to me than a new picture. It represented a bond between Al and a need for acceptance. It showed me that Al can feel and Rhino can accept and the two can  respond to each other. They bring comfort to each other.

I truly believe that Rhino knows that Al is sick. I have wanted the bond between the two to work ever since Al came home from the nursing home. It took about a month, but it worked. Now when Al is home Rhino is right there.

I did observe Al was not dressed for a public view, so I worked as carefully as I could at making sure that the photo was acceptable and that what you took from the photo was not his skin on his chest showing; but the love that was transpiring from pet to human.

When I received the email from the lady asking me to be careful of what photos I posted of him, my guard came up instantly. The love that I felt looking at his picture was instantly tainted with ugly and dirty thoughts which I had never seen.

I did let Al see the photo and I did get permission to post it. I didn’t think too much of it. Most of last night I pondered on what I had done. Had I over-stepped my boundaries with Al? Was I thinking more of me than of him?

I still don’t know the answer this morning. I only know the fact is that I was so proud that Rhino and Al had finally made it to best friends that I wanted to share it with all of you. If I am guilty than I am an innocent, guilty person.

After sleeping on it all night I have come to the conclusion that I will still post about Al. I will still show photos of him, but I will be refraining from showing him without a shirt on, just for the purpose of his privacy.

I will continue to love him, and keep trying to understand other people’s views,  and I will always be on guard for anyone trying to hurt him in any way, but I will definitely keep bragging, smiling and crying by writing posts about the brother I love so much.

 

 

She Burst My Bubble


I wanted to write this post before Al gets home so I can look at him and be happy and smile as if nothing is going on. Actually my insides are filling like I ate a bowl full of cow crap. If I went into the bathroom I am sure I would have no problem being sick to my stomach.

But instead I am drinking the hottest coffee my innards can take and puffing a way on my cigarettes.

Actually today was a good morning. Nice and calm. Got Al up and the morning went smooth. All weekend I have been playing mind games with myself. I guess it is the devil actually playing with me if I am real honest. I am a firm believer of God but yet Satan manages to squeeze his slimy ass into my thoughts.

The game I have been wrestling with and winning on my own cheating methods is called, Al is not really that sick. The doctors are wrong. Maybe we don’t really need Hospice. It is a really fun game. You look at Al and you have seen more smiles this past several days. He is talkative and carries on conversations with me better than usual.

I blamed his foul attitude on the lack of proper care at the nursing home. I blamed the too dry food they served. I blamed them for the lack of personal attention. I was winning this game in my mortal mind and I actually spoke to the Hospice nurse today when we had our meeting.

I bragged to her about how Al got his new truck over the weekend. How he has held it and talked about it hours upon hours. I bragged how he has smiled. She sat there and was taking notes from what I stated and she smiled, but it didn’t seem like a genuine smile.

You know those smiles I am talking about. The ones that you wonder if they were glued on with Elmer’s glue? I dismissed it because after all, she was jotting on her note pad. She then turned from my friend/nurse and became a drill sergeant.

She asked,” Is he urinating ok?”

“Yes”

“Is he having any problems eating?”

“Well some, a little choking and I had to feed him off and on this weekend, but no big deal.”

“Has he had any problem with sleeping?”

“Oh no, he sleeps a lot.”

“How often do you think he sleeps in a waking day?”

“Well, um, probably about fifty percent while he is here through the week nights.”

“Has he had any problems with his memory?”

“Well, um, a little. He asked for his bed time snack right after breakfast. He told me he had just finished supper.”

“What about his vision?”

“Well I have noticed that he couldn’t see the remotes properly. One time he couldn’t see the table that he hangs onto when he gets in bed, but I think it was only twice over the weekend.”

She is jotting to the point I am thinking about offering her one of my own pens in case hers runs dry. The questions are over and she reverts back to the friend/nurse. She says that she is now ready to go see Al.

We go and knock on his classroom door letting them know we are here. Al looks at the nurse who he has seen at least six or seven times now and ask, “who are you?”

The nurse looks at me and then smiles at him and tells him who she is. She proceeds to take his vitals. She hesitates on his heart area, re checking two different places. My own heart begins to race slightly but I ask no questions as she doesn’t say anything either.

After vitals are done she checks  his ankles for swelling. They are always swollen but no more than usual. She checks his eyes and then she checks his hands and fingernails. She chats with him a little bit about his new truck and then she and I excuse ourselves from the class.

Once out in the hall we usually chat alone for a few minutes. Stating when she will be back. Making sure we wish each other good days until the next visit. You know the routine my friends. Chat, chat, kiss, kiss, hug, hug.

Instead she said, ” I know you want to believe that Al is getting better. Whether you use Hospice or not is your choice, but Al is declining.”

I am thinking, what? I just told you about all the chatter and smiles this past few days.

She goes on to say that I am in denial. Not me, I never deny anything. I always like the truth except for today.

She said that Al’s memory is starting to slip a little more. She was surprised that he didn’t know her. Well, that is no big deal, sometimes I forget my own name. LOL

She said that Al’s heart didn’t sound as strong. Uh-oh

She said that his hands are taking on a different look. His fingernails were gray half-way blue fingernailsfrom the moons. She said his pinky finger had a disturbed look to it, that it was a little dark. Oh, I see

She told me her job is to make Al comfortable. She went on to say he is comfortable here at home and used to his class at Day Program, but no, the illness has not started to get better.

She said that I better get things settled within my own mind because Al’s breathing and heart are changing too. Her last words to me before we said goodbye were, he is following the path as most patients follow that are on Hospice.

I smiled at her and she gave me a big hug. Tears formed in my eyes. She left and I sat in my car and lit a cigarette. Taking off down the street it is hotter than hell here and the humidity is terrible. I didn’t even notice it as all I could do was make sure my eyes were clear enough from tears to drive.

My visit with Hospice was not what I expected today. Instead she burst my bubble.bubbles

Al Hit The Jack Pot


It was a beautiful sunny day today. I decided to give it one more try with taking Al out. We went to Leesburg, Indiana to a country Antique store called, Alley Cats.

Al had been there previous times while he was in the nursing home. Staff from his now Day Program would come pick him up and take him on a weekly outing to get him out of the stale air.

I made sure he was as dry as possible and comfortable. We went right after lunch and he took the ride well. He has been in a pretty good mood the past week. Taking his pain medications on a regular basis has really helped him.

We arrived in no time at all and as soon as I took him and his wheelchair in he wanted to head back to the one section he knew sat a coca cola truck. We gazed at some items on the way back so I could get a look at things I am interested in.

We finally made it back to the truck and I died inside when I saw the asking price of it. I told him there was no way he could afford this. I explained that this was a whole lot of money. He did pretty good at accepting it but I could see the huge disappointment in his body. He head fell forward more and he lost the glow in his eyes.

We kept looking around and I didn’t bring up the topic again. When we got ready to leave I found the owner and explained Al’s illness and how much he wanted that truck. She told me she remembered Al and that he always got so excited when he saw it.

I told her of Al’s lack of monies and she made me an offer I could not refuse. I am soft but not too soft. I would have never purchased it if it weren’t that Al will pay for half of it and the idea that he has wanted it for about three months. Besides, who knows if Al will get so excited over coca cola again like he is today.

Here are some photos of what we saw in the store. There is Al’s new truck he got and the one framed painting of the girl holding the bird is what I got for my treat of just because. If you ever stop by the itty-bitty town of Leesburg, Indiana make sure to tell the owner’s of Alley Cat that Al sent you. There is one extra photo of Al petting Rhino this morning.Al with Rhino

ally cats table and chairally cat jewelryally cats roosterAlly Catsally cat coca cola truckally cat girl photo