Do I Have to do This?


I don’t know what has been wrong with me the past couple of days but I have been tired and a little jittery. When I go out in public I tend to go into panic mode. I find myself wanting to go go home where I am safe;even though I accepted the invitation to go to an outing.

I find a few of those dizzy spells are coming back. Sleep helps. Last night I actually went to bed by 9. I don’t think I have done that in years. After chatting on Facebook I actually turned out the lights and went to sleep.

I woke up at 2am. I watched TV for a few minutes then went back to sleep. I woke up at 6:30 this morning still feeling tired. I figure I had too much sleep now. I am a little on edge already. It upsets me. I want to just shake it loose. I want to smile and giggle.

Maybe knowing a lady is coming here at 9 this morning is the culprit. She is cominng to ask questions about Al and how he died. I was told she had to do this according to State laws so Al can be considered legally gone from this earth and his case can be permanently closed.

Permanently closed? Deceased and gone? Case closed? I put her off already for a couple of days but now I have to do this. I wish I did not have to endure this alone. It makes me feel like I am preparing to go to his funeral again. Well guess I will finish my coffee and go take a shower.Image

Jesus Has Risen


Originally posted on Brian's Blog:

Luke 24

On the first day of the week, very early in the morning, the women took the spices they had prepared and went to the tomb. They found the stone rolled away from the tomb, but when they entered, they did not find the body of the Lord Jesus. While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. In their fright the women bowed down with their faces to the ground, but the men said to them, “Why do you look for the living among the dead? He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: ‘The Son of Man must be delivered over to the hands of sinners, be crucified and on the third day be raised again.’

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When You Accept Everything You Are, And Are Not, You Will Succeed


Terry:

Excellent

Originally posted on A Mixed Bag:

Monday is the start of another week for the majority of people. Some people don’t want to get up to go to work or do what they do on a Monday, but there are those who want to but can’t. Some people walk out of their house and say that they hate their home, but there are some who sleep on the streets. Some people don’t like what their partner cooked them for breakfast, but there are those that are starving. Some people argue with their spouse and say they wish they never met, but there are some who want to feel love. Some people say they have too many friends, but there are some who are lonely.

Just because you don’t like something, don’t wish it away, look at how you can use it or give it to someone who can. Just because you…

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A Final Farewell to Al for Terry


Terry:

This was written for me about my dear brother who passed today. Love and much hugs Alastair

Originally posted on A Mixed Bag:

EDIT:
This poem is for Terry’s brother, Al who was taken by the angels at 08:30 this morning. 
My thoughts are with Terry and her family at this time.

Terry asked me to write a poem to say goodbye to him. You can find Terry’s blog here.

Al suffered from MSA – Multiple System Atrophy which is a “neurological disorder that affects adult men and women. It is caused by degeneration or atrophy of nerve cells in several (or multiple) areas of the brain which can result in problems with movement, balance and automatic functions of the body such as bladder and blood pressure control.

You can find more details on Multiple System Atrophy here and here.

 

al-july-11-2

Farewell

As my brother I have loved you
For all of your fifty-eight years
We have argued and fought
Brought each other to tears

I would never change…

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Amazon and My Book, Dahlia


Terry:

This book is now available through Create Space and Amazon and UK

Originally posted on terry1954:

You can now purchase my book through Amazon. I decided to take a peek and see if it was there yet, and it was. So for any of you who were waiting for it to be included at this site, now it is.

Dahlia front coverDahlia back cover

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I’m So Pissed I’m Steaming


Last night I smelled something wrong when I went in to check on Al. It smelled highly of urine. I checked the catheter bag and it was empty. With the help of my friend being here we started investigating Al’s body.

His shirt was soaked in urine. I called  Hospice and informed them of the change. They sent a nurse out with the intention of changing the catheter and accessories.  I want to add that I have asked a few times if Hospice could change his catheter more than the normal once a month and they have refused. With the illness attaching itself to the internal tubing. I think it should be changed every two weeks, but it is against policy.When she arrived she did what she needed to do but ran into a snag.

The catheter was stuck inside of Al. Now, I want to back up to a couple of days prior. I had reported to the nurse twice that Al has stated he has to pee but he can’t. I have also said to Hospice that Al has a liquid coming out of the tubing going into his penis that looks exactly like KY Jelly.

Nothing was replied back nor checked into. So I have now come back to last night. The nurse tried and tried to pull the tubing out of Al but the tubing was stuck. She contacted another nurse who said she didn’t know how to  help.

She called another nurse who did come out. Together they pulled the tubing out. There was some bleeding but the nurses repeatedly told me there may be a little bit of bleeding but it would stop by morning.

This morning when Al was checked there was blood running down between the legs. There were blood clots at the top of the tubing. He is still bleeding and complaining of burning. The catheter bag itself, is filled with blood about 250cc.

I immediately called Hospice and asked for a visit. The regular nurse was not in. Another nurse got on the phone and said this was perfectly normal. According to the two nurses that came out last night made comments that in all their years of nursing they had never seen this happen.

The illness of M.S.A. had attached itself to the inner tubing, and so when they tried to remove it through the small opening of Al’s penis it wouldn’t budge without being pulled. So now as it stands, this isn’t the normal day Hospice would come out.

The  nurse said to me on the phone today that if she had to come out it would not be until later this afternoon. Then she said this is so normal that Al could bleed all day today and tomorrow.

I asked her repeatedly where the entrance of the tubing inserted to. I knew  the answer but I wanted to hear hers. She kept saying the tissue. I said what tissue? Where is it going when it is inserted?

She then stated, ” I will have another nurse call you.” I said, ” I asked you where the tubing went into.” ” Into tissue.” In the end she said, ” Well do you need a nurse later this afternoon or maybe you could just keep an eye on it and let us know if you see anything odd.”

End of conversation. No nurse coming. Al bleeding. I am so steaming pissed off I could blow steam out my nose. I can’t even change  Hospice at this point as Al is too close to death for any change.

purple candlesHere is a clip from a web page My Health that I am pasting here to let you know I am not just over reacting.

As stated above, trauma is an ever-present facet of catheterization. However, there are rare cases when the catheter has caused some sort of physical damage either because it was too thick or if the balloon was overinflated for an extended period of time. In either cases, contacting your physician as early as possible will allow you to get the condition checked out and fixed.

With regards to an infection, physician attention is critical. The urinary bladder is technically supposed to be a sterile area. If an infection were to occur within it, you will become sick and will need to be put on a course of antibiotics to be treated. The longer a urinary infection remains untreated, the more difficult it will be to remove it. The presence of blood in your catheter bag in tandem with a urinary tract infection will open up a pathway for the bacteria to cross into your bloodstream, so you should contact your doctor immediately when you detect heavy amount of blood in your catheter bag.

All I Can Do is Love Him and Cry Inside


How do you deal with something that is out of your hands? How do you make decisions when there are no options to choose? Which way do you turn when you see no doors open?

For a few days now Al has had his illness seeping out onto his face. We have dealt already with the illness seeping in his feet and his catheter area, but now no one knows how to fix the problem.

Al continues to fight high temperatures that continue to rise and without the help of Tylenol prescription strength, liquid, he would already had a seizure and maybe have been brain-dead or worse.

Now we are dealing with this stupid illness that has come out of his ear and trying to escape through the other ear. Hospice has been here a few times to try to conquer this issue, but nothing they prescribe helps.

No one can get inside the ear and bring MSA out. His ear is swollen, red and bleeding. Worse yet, it is the ear that is on the side of his head that is locked into a non-moving position.  I have never felt so darn helpless as I do now, doing everything in my power and yet doing nothing  at all that helps.

I need a super human power. I need a miracle. I need Al to be released from this terrible pain. I see no sense to this madness. I can not find any explanation as to why Al is not being taken home. I am exhausted, Al is restless and in pain. The illness is having its way with him and all I can do, is love him and inside cry my heart out.

Alcoca cola flagAl on snow daycropped-al-and-rhino-nov-1.jpgAl and me Christmas 2013Angel_Wings__Animated__by_Iaenic

A Day Once Again Has Begun


A new day has dawned. I had 30 minutes all to myself before the caregiver arrived. I washed my face and then stared at the reflection looking back at me. Who was that woman?

I didn’t get any twinkle in the eyes. The mouth was in a neutral position. She stared at me as I gawked at her. I knew her once. I thought I knew her well.

Being a caregiver can make you another person that without realizing it, you suddenly do not recognize. My hair is the same color, but messy. My shoulders are slumped instead of proud.

I looked away as she did too. Putting that face far from my mind, I went into the kitchen and made some fresh coffee. I fed the cat and cleaned the cat box. I can do this without thought, just a motion that has become a habit.

As the coffee perked, I went in and looked on Al. The familiar breathing that we do without thinking, has  changed and I now stare and watch for rhythm. There were no even tones.

What once was smooth has now become sporadic. What was once taken for granted is now always in question. I walked out of his room, positive he is still alive and grab myself a cup of hot coffee.

It taste so good. Hot and fresh, a new cup, like a new day. A new beginning of this thing called life. I sit here and look outside the window as I try to guess what today may bring. Then I see the familiar car pulling into the drive-way. The sound of Rhino, our cat comes to me wanting his first petting of the morning. Life, a mysterious, taken for granted, takes place once again. I take a deep breath as I walk to the door and open it with a relaxed smile on my face. The moment of thought is gone and the day has begun once again.

new day

Daily Prompt; Lucky Star


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

Today is your lucky day. You get three wishes, granted to you by The Daily Post. What are your three wishes and why?

Photographers, artists, poets: show us WISHES.

Ever since I became a mom I wanted to be able to leave my three children something to remember me by. So my first wish is: To have my first book, Dahlia, finally land in my hands, published, along with three copies for my kids.

I am not sure if Daily Post can give me my second wish because it is a biggie. My second wish is to have my children stripped of all sad, bad, painful memories. I would have my children all on the same page and they would stay in touch with me, their mom, at least once a week.

My third wish is a greedy wish. I wish for something I know Daily Post can not produce, but I can dream can’t I? I wish for me to bump into, or he knocks on my door, or I see him while taking photographs, and we look at each other, and we just know we were always meant to be.

I have to break the rules here friends. Yes, leave it to me to stray from the path. I can’t help myself ok? My fourth and final wish for this prompt is that I see the angels lifting Al from his bed. I see the smile on his face that I have come to know. I see the sickness spilling out of his body. I see Jesus holding his arms out reaching for Al. I hear the choirs singing. I see the rain turn to sun. I see Al standing among our family and they are all waving at me and waiting for my arrival next.

Alright, I am done. Thank-you for letting me dream upon the stars.

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