You Must Be Curious
I have had so many new visitors lately. Word sure gets around when you are speaking of illness.
I…
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Tag Archives: Labored breathing
You Must Be Curious
I have had so many new visitors lately. Word sure gets around when you are speaking of illness.
I am so grateful for all the support I have received from each of you.
Today just has been pretty bad. Al started during the middle of the night with terrible nightmares, that lasted until 9am this morning, so I have been up a long, long time.
He has had terrible tremors, so much sweating I have had to change his bedding several times.
Forget the house, it looks terrible but today, I don’t care.
He refused food at all until about an hour ago when he ate one small doughnut with great struggle.
Hospice spent an hour here. Medications were once again changed, some taken a way, more added.
He has seen Rhino hanging upside down from the ceiling. A conversation and discussion was taken up with the doctor.
It was related to me that now that we are in the ending stages, hallucinations are going to happen. Not from the medications, but from the brain being so messed up with connection problems.
He has been on his light more today than any other time. Sometimes just to tell me he is done, or he is tired of fighting, that he wants to die. Other times it was because he was seeing things that were not there. He asked me what blue thing was flapping in the air and I finally figured out it was the blue TV screen.
He has slept little, he has been hot, cold, hot and more cold. Sweaty, dripping, swimming, you name it, he has been wet on his entire skin all day.
Rhino the cat is going nuts in his own way. He tries to comfort Al but Al doesn’t get it or sense it.
For those of you who have not been with me very long, I wanted to share what M.S.A. actually is. It is rare, about one in one hundred thousand people get it. Many doctors do not recognize the word.
Please read if you are at all curious. All of the symptoms stated, Al has.
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- I’m So Dizzy From M.S.A. (terry1954.wordpress.com)
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I’m So Dizzy From M.S.A.
I just got through with Al and his supper. He could not feed himself. So I fed him. He ate about 50%. I am wracking my brain trying to think of something different to talk to you about. I have been so busy taking care of Al, it seems my blogging has suffered.
I have a little bit of free time right now and I so want to chat with you all. Find out what you did today. What are your plans for the weekend? I feel so full of guilt that I am having a hard time tearing my thinking a way from Al laying in that bed.
All of you are so right. I can’t guess tomorrow, not even this minute. I can’t sit and stare at him. I can’t get overly concerned even though I can hear and see him struggling to breathe while doing such an easy thing as eating.
I want to splash the ice, cold water in my face, wake up from this terrible dream. I will give you an example of just what I had to listen to since he has been home for about three hours.
When he woke up I went in to see if he was going to eat. He told me to get the cat down. I said the cat is laying right beside you. He is alright. Al says, ” He is hanging upside down. He is going to get hurt, get him down.”
Part of me wanted to start crying but the other part mimicked getting the cat down from the ceiling. Last night he was confused also. I can’t remember what it was about now.
Then I had to sit and listen to him struggle to breathe during eating. I can’t figure out why he is struggling just chewing food.
So, there are changes happening and yet I need to remain the same, I can’t do it. My mind is frozen like water is still beneath a frozen pond.
I am strong
Yet I am weak
I stand here for you
Yet I think of me
Crazy, swirling thoughts
Running throughout my mind
Quit spinning me now
I am ready to get off.
Written by,
Terry Shepherd
11/01/2013
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Tne Next Step in M.S.A.
Ever since Al came home last evening something hasn’t been right. Setting aside the fact that I could see he was very weak, I also tribute this to the fact he has been in a bed for five days.
But there is something else and I could not put my finger quite on it. Now that Al has been here all night and today I see a little more issues. Breathing for Al is difficult even when I am not moving him.
I did get him out of bed today. I pushed him to the kitchen table and he ate. He didn’t want me to feed him but it took him an hour to eat, but it’s alright, we weren’t going anywhere today.
The Hospice nurse came today to see Al. She checked him over. Al could not take his deep breaths like he needed to do so she could listen to his lungs. He leaned to the side and didn’t sit up straight. His voice is so soft and he doesn’t articulate his words so understanding him is very difficult.
Today I have seen him breathing deeply. He is struggling and I am giving him medication to help with this. I just checked on him and he is actually stopping breathing and then breathing again. It is not like that special breathing at the end of life, but very similar.
The Hospice Doctor and the nurse, and Hospice House all agreed that it was time for the next step. I have dreaded this for months and now it is here.
He can still go to Day Program if he can function here at home enough to go. I know he wants to go pretty bad tomorrow as they are having a Halloween party. I hope he can go too for his sake.
The other decision that was made is all of his medications minus pain and seizure and BM aides have been put a way now. Writing that sentence about rips me in half. I am not dumb. I know what that means.
I want to write more, but I can’t write now. I just can’t deal with it, sorry.
Hugs to all of you who support Al and me, who have stood by our sides. I know you will each understand why I have to cut this short.
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Quick! Where is the Straight Jacket?
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………….
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One of the Hardest Things To Hear
I am not going to make this long. I will just say that Al has not felt good for a few days. In his…
One of the Hardest Things To Hear
I am not going to make this long. I will just say that Al has not felt good for a few days. In his words, he says he fills funky. He has not eaten well for a few days. Today at his Day Program he blacked out and fell forward.
The Hospice Nurse just left our house. I want to take her simple and polite words and dissect them to death but I have to remain sane. I knew something wasn’t right when she made me leave Al’s room to talk to me.
I can still hear her words exact. ” Has he been talking about dead people? Has he mentioned anything about not being here long or taking a trip? I couldn’t find a pulse but did find a weak one in his feet. He may sleep a lot now. If he doesn’t want to eat or take his medications just give him the pain ones for his labored breathing. He is declining.”
Dearest friends, please pray for me. For at this moment, this very second I just want to throw up.I am not sure if I can do the waiting game, the over-checking on him, the stress and worry, watching his breathing things. I need help.
Who I am 