Now we all know that Al is my brother. Being a caregiver on top can lead to some touchy situations. This is one of those situations.
I just came out of Al’s bedroom after spending about 20 minutes on one procedure. I told you all that a few days ago Al…
Now we all know that Al is my brother. Being a caregiver on top can lead to some touchy situations. This is one of those situations.
I just came out of Al’s bedroom after spending about 20 minutes on one procedure. I told you all that a few days ago Al was given a Texas Catheter. Now since he has had it I check it often to make sure it is in place since it is not an internal one.
Well tonight, and even worse I am the only caregiver at this hour, that little sucker had come off. I was a lucky gal though. No mess as of yet. I proceeded to get my gloves on and go to work. The goal being get it back on without injury to Al.
I try once and no luck. I look at Al and he is just watching me. I try again, failed. I can feel beads of sweat starting to come on my forehead. I explain to Al I am doing this for the very first time after watching the nurse do it. Al is just looking at me. More beads appear.
I try again, curses. I take a deep breath, determined to not have to call Hospice in. I try stretching it over. I try stretching it in a different direction, nothing. I finally get it on and it rolls right back off.
Once again I look into Al’s eyes and he has not taken his eyes off of me. I asked him if I am hurting him in any way and he says nothing.
Now the challenge has begun. This sucker is going on one way or another. I will win this battle. I begin to let my mind wander back to the days when I was a young gal getting involved with sex. Was it really that hard to do?
Oh wait, I never had used one before, guess that is why I have three kids. I stand straight up giving my back a rest. I wipe the sweat from my brow. I smile at Al. I take a deep breath. Come on you heifer, get yourself back on there! Do what you are told. This is supposed to be easy. No luck.
I cover him with a towel and say a silent prayer that he doesn’t shoot everywhere while I come out to the internet and google Texas condom catheter videos. I had to sign in saying I was 18 years old, and then I proceeded to take mental notes while I observed the nurse putting one on a dummy model.
There was one difference with the dummy and Al. Al was human and he is ill. The video talked about a certain degree angle to do this easily. Now with Al we had a problem there. I won’t go into big details but let’s just say there was no soldier standing at attention in this room tonight.
I went back into Al’s room and said a prayer. Please dear God. We both know this has to go back on. I can’t do it myself. I really need your help like no other time. Do your thing Lord, teach me.
I looked at Al again and this time he was watching TV and not me. I put clean gloves on and grabbed the little bugger and said, let’s getter done!
I wrestled it like a cowboy ropes a calf. Within seconds it was on. It is not perfect. I will have to continually check on it. I will pray it remains in place, but I did it. The sucker is in tact.
Whew. sweat is in my face and in my hair. I hear Al take a deep breath. I don’t think that breath was because he is struggling to breathe. I think it is because he was relieved he still had his manhood in tact.
Lordy, I need a shower. Oh, so I don’t forget to do it later, thanks Lord for helping me get that job done!!!
Today was a good day in as far as it was not snowing the huge amounts promised. I surprised Al when I arrived at the facility. He was upset and in frantic mode. I think I heard one cuss word but ignored it as I knew by opening my mouth I could end up hearing more of that nasty language.
He was looking for his slippers. I don’t know why exactly. He never did put them on. I walked into this chaos. The CNA was looking but she could not find it. Only one was showing. After she gave up I asked Al to please stand up from his recliner and I would move it and look behind it.
I don’t know if I am in partial denial or what but he could not stand. I literally had to stand him and then immediately his knees buckled. Eventually I had him sitting on his walker, moved the recliner and there the slipper was. He put it with the other one and that was that.
He had an unexpected visitor. I could tell when I looked into the visitor’s eyes that he was totally shocked to see me. Where else would I be? Down in the lounge watching television? It was a bad relative. I played my cool since Al was not doing much but letting his mouth hang open. I don’t think Al knew quite what to think.
The chat was calm I would say. Al didn’t talk much, but he has been in too much pain for visitors. I think he tolerates me because I bring him goodie treats. LOL There have been enough complaints about his pain that the doctor was notified. Al’s pain medications were upped. I want him to be in as little as pain as possible. On the other hand these pain medications are strong and bad side-effects. It seems these do help after a couple of days getting inside his body.
Al has sharpened up or maybe I should say caught on. He made a comment to me that these pills would only work for a while and then he would be back in pain. I silently agreed knowing full well that this nasty old Parkinson’s is just going to have its way with my brother.
I met today with the Social Director and the lady who came from about an hour a way. I was not familiar with Medicaid nor all the different avenues that this program has to offer. I listened intently to all that was said and the lady Anita, asked me which route I wanted to pursue. I looked at the S.S.D and she spoke for me.
She told Anita that she didn’t want to close doors for Al. She wanted all of them open. The only thing I really understood is when an opening comes available at a group home it seems he can go. It can take a while or months. I could help speed it along by allowing him to be placed in a group home somewhere in Indiana and then when an opening was here in our city, he could be transferred. I didn’t know what to think about that. He could end up being the shortest distance an hour, or he could be up to five hours a way.
First I hate to drive. I always have. Going just an hour a way is enough for my knuckles to be red from gripping the steering wheel. I talked to Al about it and he didn’t say much. The other option is some sort of Medicaid Waiver. This would allow Al to come back home.
He would get forty hours a week of help from different programs at Medicaid’s expense. He would have his bathing and anything he needed done for him. He would also be able to go to a day program here in town Monday through Friday and be home in the evenings and at night-time.
I don’t mind that myself. Al didn’t say too much except he could be with his coke things again. All he cared about was the word day program and friends. He has a lot of friends at this day program here in town. I could never let him go before because he was not Medicaid.
There is too much that I am confused about. I do agree with the S.S. D. though. Let’s keep as many doors open as possible. Let’s try all the routes and see what comes through. All I know is Al is becoming depressed. He is sad too often and it is so foolish for him to have to feel this way. It is because he is ignored. It is because he has no one his age. Residents don’t talk to him. Staff gets involved by the policies and medications and meals.
A human needs touched and talked to and to know they are cared about. We all need this. He is in pain and he is sad. I don’t want him drowning in depression so I am talking to Al about everything I hear. I want him out of there as quickly and safely as possible for him. I want to hear him laugh again and see the smiles.
Dear brother I love you so
You and I are no longer together
But you are constantly on my mind
And in my heart each day
I feel your pain as I
Look into your eyes
I see the sadness
Pouring out of your eyes
I am trying to help you
As quickly as I can
Please understand
That this takes time
Please hold on for me
Do not let yourself sink
I never knew it would be like this
Or I would have kept you here with me
I will do my best and with your agreement
I will get you to a happier place
I love you dear brother
I am here for you………………
Terry Shepherd
02/20/2013
Explain why you chose your blog’s title and what it means to you.
My blog title. Hmm interesting. When I started this blog it was the first time I ever had written for a blog of any kind. I wrote and scribbled through my years. I never let anyone see it. I didn’t think it was good enough to show others. I didn’t want to be laughed at for being such an emotional clutz.
I have always been a shy person when I first meet a new person. I have always been the wallflower when in big gatherings. It takes me awhile to warm up but then watch out. I can be full of laughter with plenty of jokes.
Well that is the way I used to be anyways. Al being sick and the caregiver in me being tested daily has saddened me around the edges. I was thinking last night as I was picking out the clothes I would wear today to go see Al how quiet it has been here the past two weeks.
You all know I have suffered from bronchitis. I had two phone calls in two weeks from friends. Other phone calls were telemarketing or Al’s facility. There was a period of time that I was afraid. Afraid because I was not getting better. Afraid I would die here at home and wondering how many days it would take someone to find me.
I guess I am still a little bit of a wallflower. I am not aggressive when I go out into public. I smile a lot. It is a nice cover-up for feeling awkward in starting a conversation. I worry too much about my looks. I don’t have the Barbie doll figure, but I never did. I think too often that men want those skinnie Minnie girls so I shy away.
Through a program of Medicare called Ticket to Work, I may be able to go back to work part-time. I have started the process and am waiting for more information. This would be good for me. The problem is that the place I may be able to work for will place me right back into care giver, and right up there on top with the mentally challenged and disabled.
Can I do it? Yes, but emotionally, I wonder. I have been through so much with Al I just am not sure if I can continue on with other cases, plus stay in close connection with Al at his facility. Keep up with his needs and care plan meetings and visits.
Sometimes I just want a fun job. One where people are laughing and talking and the work is on the light side instead of the emotional roller coaster ride. Wow, I have side-tracked here. So sorry about that.
Returning back to the prompt, I named my main WP site Terry1954. I wanted people to know that I had a name. I was real. Many times people do not know whether I am male or female because of the spelling of my name, but I guarantee I am female. I added the year of my birth, so you all had an idea of what age group my thoughts were coming from.
http://dailypost.wordpress.com
Is access to medical care something that governments should provide, or is it better left to the private sector? Are there drawbacks to your choice?
This is such a touchy issue. The world today is not as simple as it used to be. Years gone by the government was for the people and by the people. Today it is not quite like years ago. The dollar has become very large in the eyes of people.
I almost did not do this prompt as I did not want to be bombarded with bad comments or made to feel stupid. But then I looked at myself in my one little corner of the planet and thought to myself, I am just as good as the next person and I believe in my heart that no matter what area of the world we live in we are all created equal.
George and Sally and Joe may make more money than myself, but does this make us separate breeds living among all others? If he is black and I am white and she is yellow polka-dotted does that make us different? When we bleed, do we not all bleed in the same way? Is the blood not red that comes out of our skin?
When we are faced with a pain of loss of a loved one, do we not feel the same heartache? Do we not all want the same things in life but only have different ways of expressing it? Maybe John went to Harvard, and Sara has a high school diploma. Maybe Harry has a GED. This knowledge can provide us with a better employment opportunity but underneath it all, we are still from the same grain.
We all want to feel love, to be loved, to be healthy, to prosper, to have a choice in matters that cross our paths in life. Therefore should we all have a choice in our own personal health care? Should we all have the opportunity to voice our thoughts? Or would it be better to let someone who doesn’t know our medical history, or maybe our finances, our aches and sorrows make such personal decisions for us?
What can happen if our choices are taken a way from us? What can happen if we are entitled to come together as a union and vote, giving our say? What can happen if we are left to our own devices? It is definitely a tough question to answer. I know that as far as I am personally involved with the illness I have been suffering through, I am glad that I was able to go see a doctor. I was thankful that I was able to afford the co-pay. I have also been on the other side of the fence where I was so sick but had no funds to pay a visit. I put myself in to more debt by going to the local ER, where an upfront payment did not used to be required. But from doing this the expense of that visit was so much higher than our local doctor, I would be even more in debt. I was afraid to open my mailbox, knowing I could be turned over to a debt collector. I hated being sick even more than I do now.
As we get older, our finances change. It is harder to make ends meet, harder to find a job that we can handle the physical aspects of it. Even harder to get insurance. All I can do is live one day at a time. Pray and thank God for today only. Hope for tomorrow, and have faith that our government will keep us in the for front of their decisions.
This prompt is my opinions only. I am not in politics and hold no political position. I am a small grain of sand among the many grains of the earth. I do not claim to know even one-fourth of what is right and wrong in the world. I just know what I see around me and the suffering that goes on in my own neighborhood with illness and trying to survive for yet one more day. Thank-you.
All names used are fictious.
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When you were 16, what did you think your life would look like? Does it look like that? Is that a good thing?
I don’t remember a whole lot at the age of 16. I do remember me getting my driver’s license. I had my first job. Mom and Dad always said if you want extra’s in life, work for it. I remember in my mind thinking that I was going to be in the health care field. It wasn’t going to be what I am actually doing today. I was going to be a Physical Therapist or a counselor for teens.
Life was fairly simple at that age. The normal drama that teens go through was really not that much out of the norm. Dating, good grades, helping out at home, and getting a pay check, and most of all friends. Not one or two, but as many as I could gather. Quality was not the issue then, quantity was.
I dreamed of getting married and having kids. I dreamed of the happily ever after that a lot of girls do. It doesn’t always work out this way, and it didn’t for me either. God brings changes and test in to our lives to strengthen us and hopefully find our own path in life as individuals.
Today, I have been married and am divorced. I did have the fairy tale dream for a while, but that was short-lived. I do have three wonderful and beautiful kids. I guess they are not kids any longer but in my heart they are still my kids.
I did go into health care, but on a more personal level. I did schooling and certificates, but have spent the last 23 years taking care of someone else. The goal was not like I thought it would be. Help them heal and they walk out of my office in the end, paying me and skipping on through life.
My goal now is to bring comfort. To wipe the brow of a lonesome soul. To gently wash the tears a way. To bring comfort the only way I know how through my words and touch. I am proud of where I have been led. I have come to know many wonderful human beings. I have touched hearts and souls with so many.
I may not have a glamour life. I may not spend my spare evenings dancing and bar hopping. I may not even be the life of the party. But, I am where I am supposed to be at this time in my life.
Now with Al being in another home, I am searching for the road that will lead me further into helping another soul. Maybe it will not be in health care. Maybe it will be through my words. I don’t know. I loved my dreams back when I was sixteen, but I love me more for the lives I have been able to touch and heal.
Picture the one person in the world you really wish were reading your blog. Write 
her or him a letter.
Dear Dad,
I know you are in heaven, looking down on me, even as I write. I can only hope and dream that you are smiling at this moment, as you watch me write this to you. I know you are standing behind me, with your hands held together behind your back, trying not to breathe too heavily, so not to interrupt my train of thought.
I know that I was not the child that you dreamed of daddy. I know first of all, you wanted a boy, and you told me years ago, that this is why you spelled my name like a male instead. I know that I made choices that you did not agree with.
What you didn’t know dad, was that I idolized the ground you walked on. I waited anxiously for your approval of everything that I did. I would sit and think of ways to get you to say something.
I know you loved me daddy, I really do. That one time when I was out of high school, and I thought I knew everything, I moved a way to another state. You remember this daddy, don’t you? You remember how I called you on the phone crying, and pleading for you to come get me.
You said of course, and you and other family members made the long drive to get me. I want you to know daddy that when I saw the first tears in your eyes, when you saw me safe and unharmed, I knew from that moment on, that you loved me.
I learned through growing up that not all moms and dads show physical love, such as hugs, and squeezes, that sometimes, just knowing you were always by my side, was enough.
I remember how you invited me so many times to go down to the basement with you. You would be building something out of wood. You would ask me to hand you this or that, but I think secretly, you wanted to smoke your cigars without mom telling you it was bad for your health, and you enjoyed spending time with just me.
I saw one more time when you showed your feelings through tears. You know, the time when we came home from mom’s funeral and you and I were standing alone in her clothes closet looking at her clothes, and you let me hold your head on my shoulders, and you wept for the love you had for mom? I know you remember daddy. I felt so special that I was the one who could help you for a change.
It took me many years to come to appreciate the person that I am dad. I think you would be proud of me today. I believe you would say that I did a good job. I would hear those first words, as you look back and see how I took good care of your son, my brother, Al. I did my best daddy. I loved him and looked out for him and protected him from the wolves of the world.
I had to place him daddy. I had no choice. Please do not be disappointed in me. His care needed more help than I could ever do alone. You remember how I took such good care of you daddy? The illness that took you a way from me? I bathed you, and brought you treats. I gave you shots and your medications. I held your hand while you wept from pain.
I tried to take as good of care of Al as I did with you, but your illness stopped and you went to heaven. Al’s is dragging on daddy, and I needed more help. Please say you understand. Don’t think I made another mistake by placing him. Look me in the eye and let me see that you understand.
You would be proud of me daddy. I am very close to God now, and have been ever since that morning you and I prayed together. Do you know that God gave me a job to do? It is an important job dad. He told me to write, and to let his thoughts and my heart write the words. He instructed me to be an inspiration to others. Isn’t that a wonderful job God gave me?
I have made many wonderful friends daddy. You would love them all, like I do. Oh dad, I even wrote my first book. Thanks to a wonderful friend, it is being edited right now. Maybe some day daddy, I will hold my first book up towards the sky, so that you can see it. You and mom will surely hug each other for having a daughter that wrote a book. The book is called Dahlia. I can’t wait to show you!
Lastly, daddy, I love you so much. I have never had one day where I have not sat and thought about you and our lives together. I love you so much. Don’t cry now daddy, I know you miss me too. I will be there with you and mom, sooner than you think.
Love,
Your daughter,
Terry
I am very nervous this morning and not sure why. I think I slept well but I do know the cat, kitty, has been very playful running all through the house. She has just now settled down for a morning nap after three hours of play.
Today, also there are many people in our yard and a lot of noise. This may be the reason for the stress. A ramp is being installed for my brother. I have been taking photos of the progress and will show them later on.
Al didn’t wake up in a good mood at all. He bitched, and I use this word lightly, excuse me, but he did all the way through his breakfast. He hurt, he couldn’t open this or that. He was tired.
I know all this!!! See the stress! I hear it almost daily. What in the world do you want me to do? I offer to open, pour, tear and even feed. You are the one who is fighting me with the help. I know you want to remain independent, but when you can not do something, for heaven sakes lower that pride and ask!!!
I take him back to the doctor this coming Friday and we will have the priority being pain medications or being sent to pain management. I am ticking down the hours until Friday gets here.
Yesterday I started making the process of phone calls to help place Al, but was stopped pretty much in my tracks. I have issues, issues with strangers coming into our home, into our finances, and making their own assumptions on our tidy little family here. I don’t mean to sound gruff, but sometimes companies, businesses, and others just don’t see things the way I do, and their way of caring is by rule books and not by the heart.
Also, last evening, I got an email that took me back in time to when I worked over 20 years in the medical field in hospitals and nursing homes, private care and hospice. I was suddenly remembering that sometimes when patients have mentality problems, well, I will just say, things can be different.
I have pretty well for now, until I am forced by this illness, decided to hire another care giver who will spend much more time here, actually helping Al with his daily needs and my getting out of the house. This would help so much for both of us.
Some may not understand my reasons, but I have to follow my instincts for now and do what is best for the two of us. I know there will come a time, when no matter how many caregivers are here, nothing will help, but for now I want him here where I can help him and show him I love him, just for now, a little longer.
Who I am 