Daily Archives: October 24, 2013

Dedicated to My Friends on Facebook and WordPress

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All day I felt sick. I was either nauseated or sitting on the pot. I am tired and stressed. Worn out and frazzled. Tonight I have been doing laundry because as far as I know Al leaves tomorrow around 6:30pm for the Hospice House.

I have cried today. Tears for the helplessness I feel for Al. Tears to have to watch him decline. Tears for the amazing friends, yes I call each of you friends, that have said the kindest words ever I have heard.

How can I not see your face and yet feel so close to so many of you. M.S.A. support pages on Facebook have become a resting place for my mind. No, it is not a joy to see others write to me how they have lost their loved ones to this terrible disease. But so many times they recognize Al’s symptoms because they have dealt with it too.

M.S.A. web pages are full of children caring for parents they have lost. Many are in the same place I am, playing the what is this, what if, and how much more suffering will our loved ones have to tolerate game.

It is a sick game, an emotionally draining game with no end in sight. My dad had leukemia and he never suffered like Al is until the last week of his life. I see Al suffering day in and day out.

My mom had an aneurism and she went into a coma almost immediately. Then there is M.S.A. who lets everyone know it is here and is staying until it gets sick and tired, bored and moves on down the road to the next culprit.

Al has slept for the most part all day. He did eat, smaller meals but eating. He is watching TV so I am writing my thoughts. I look around at the oddities here in our house. I see orange Halloween lights mixed among other corners of Christmas lights and sparkles and I think this is nice, although different, and Al, this is all for you.

I am going to miss him terribly while he is on vacation, but I will also keep it foremost that for me to be able to tackle M.S.A. I need to be in tip-top shape. When I want to fall asleep while Al is awake is not a good thing.

The house will be quiet but maybe Rhino will be my cat again. The washer will silence for a few days. There will only be one TV playing. Meals will go back to easy fixings. Grocery bill will go down. No Hospice nurses to meet, no doctors to see. I can sleep and stay in my house coat all day if I want.

All this will lead to a better sister when he returns. I sort of freak out just a bit. What if God takes him while he is gone but then I think, no, God won’t allow that. He knows how important it is to me that I am holding Al’s hand when that happens.

I always notice when Al is upset or talking to the nurses or doctors all I have to do is hold is hand and rub his fingers and he calms down instantly, every time. Al may not be able to verbalize well in an adult way, but his actions speak very loud.

God was working over-time here at our house. He was answering the hundreds of prayers that were being said last night. I have had over a thousand comments of prayers. So I don’t have to see your face to know you are my friend. I just know and feel it. I don’t care if you live in Australia, or England or Africa or next door, you are my friend to the end.

Friend

What is a friend

A mind with no face

A touch with no hand

A beating heart

Reaching out to me

Thoughts of goodwill

Tears shared

Through the oceans

A step forward

With no imprint

A message

With no bottle

Heart linked to heart

This is who and what

My friends are made of.

Written by,

Terry Shepherd

10/24/2013

Dedicated to all people on my Facebook and WP pages.

flowing

 

 

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I Am Still Standing

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I live in such a small speck of the world and yet news travels quickly from within these walls. A good example is I was telling you I am a wreck. I guess Len  said it best this morning, I am sort of a control freak.

I don’t mean that I have to control your life. I have to control what is going on in my own home and this means Al‘s disease too. When I can’t help him, when I feel helpless it freaks me out.

The phone rang earlier and it was the Hospice Social worker asking if he could come pay a visit to Al. Of course I said yes. I told him Al was asleep and not to feel bad for waking him up. Al sleeps most of the day a way so he will go back to sleep, which he did after Chuck left.

It turns out that he was observing Al and I didn’t realize it but he was observing my actions and expressions. Word had been sent through out Hospice and the nurses and doctor knew Al was beat and I was exhausted.

Chuck visited with Al while I changed Al’s sheets. Chuck asked Al the normal question, ” how are you doing?” That’s all it took, those few words and Al was out of control. The tremors were bouncing off the walls. His tears were flooding and his words were I want to die but God won’t let me.

He got so emotional I just sat down on Al’s newly made bed and let out a big sigh. Chuck observed Al for a while and listened as well as he could. You can barely understand Al anymore between his tears, tremors and soft voice.

When the visit was over Chuck told Al, ” You are a lucky man. You get to live here at home with your sister. Do you know where you would be if she wasn’t taking care of you?”

Al shook his head yes.

” So we are going to give your sister a break. Tomorrow after you get home from Day Program, I will send the ambulance down here to pick you up so you can have your very own vacation and get spoiled rotten by the nurses and the food. You are going to the Hospice House.”

Al asked, ” do I get to come back home?”

” Yes, you get to come back home.”

” Alright I will go.”

So someone heard, someone responded, friends from Facebook prayed, WP friends prayed. I get a break. I get to sleep some of this stress off. I will be rested when he comes home and be able to be a good caregiver and sister to Al through the next chapter of this illness.

I don’t know exactly what time he will be picked up, but from what it sounds it will be around 6:30 tomorrow evening. He will stay for five days and then return home. Thank-you for being my angels, my dear friends. This is tough, it is the worst I have lived through for so long, but I am still standing.horse

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Quick! Where is the Straight Jacket?

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I didn’t want to do anything today. I didn’t sleep well last night. Al was a wake through the night, not wanting anything really. Seeming a little confused. I am feeling guilt this morning also.

I got a call from the Hospice nurse stating Christy the regular nurse Al sees will not be here today. That the nurse last night who was here will be seeing him instead. Oh dear, what have I done, is what I was thinking.

I remember being so  upset yesterday that the Day Program has said they tried to call Christy but she never called back. I knew that there had been two occasions where I had tried to get a return call from her but nothing.

When the other nurse appeared last night I blurted it out that it wasn’t right for the only link to Christy was through her phone and the fact she doesn’t return the calls is very upsetting to me.

I just hate getting anyone in trouble period. Of course it could be that Christy was just off or ill or something. I have a bad habit of thinking the worst at times.

I looked around the house and thought the hell with it. It will still be  here later today. I am still in my house coat after taking care of Al this morning. I did get him up and he went to the kitchen table. His voice was so soft I could barely hear what he was saying. I just have having to say huh, what did you say?

He ate a smaller breakfast but he did eat. He once again said he is going to die very soon. I don’t know what it is about me that is wired wrong but I am like the person who has to know how everything works and how it fits together.

I sat down with him while he ate and asked him what makes him think he is dying. He said he just knows inside. He said he knows he is getting weaker. He said his nails are getting grayer.

I had always been concerned about his gray nails too but Hospice says it is no big deal and not to worry about it. Of course my come back in my mind is then why aren’t mine gray.

I have found myself trying to give explanations to anything. Example, he ate breakfast, even though it was small, he ate. He isn’t dying. He just doesn’t feel well. Or he is alive and well this morning, so last night, what was that all about? What did the nurse mean when she said he is declining?

I don’t see any real major changes. Yes, he is definitely weaker in every way, but that doesn’t mean he is dying. I am making myself so ill that I am constantly running to the ladies room from my nerves being infrared.

The fact is I don’t want Al to die, and on the other hand I want him to go home so he can be pain-free. I don’t know when he will leave. Al can’t possibly know when he is leaving. He just feels like it won’t be long. Maybe he is right, maybe his is wrong. Maybe he is just having a rotten day.

No one seems to know why he blacked out yesterday. No one seems to know any direct answers, and I think this is what is wrecking my emotions. Watching, listening, checking on him often.

I  hear his labored breathing. I see his hands turning white but his nails remain gray. I see him eating. I see him declining in some ways. I see me  a ball of mixed emotions. Why can’t I just settle down and accept the truth. Only God knows. I guess I don’t want any surprises?

Wow, why would I even think such a stupid thing. Hospice is here. They are only here for one reason. This is no surprise.

I better quit before one of you comes here and puts me a way for going nuts.  All I know is I love him, I see what I see. I hear what I hear and God only knows the rest. Well I have to get dressed now and straighten up the house. The phone rang and the Hospice Social Worker called and is coming over. Now what………….

stressed