Worse Night Yet For Al


Yesterday was awful, last night was terrible. Al got worse as the day wore on. By last night he was screaming he was on fire. Tears never stopped and I could not seem to bring the pain down.

I ended up calling Hospice around 11pm. At 1am a nurse showed up. She could see his pain and she called the doctor on call. I had never dealt with this doctor and I swear if I ever see her face to face I will have my way with her through words.

She ordered the nurse to give Al double one of his strong pain medications. In less than half an hour Al went nuts. He was screaming and crying. He swore his body was going to burn up. He began to hit himself wildly.

I couldn’t take it. I made her call that doctor back.  The doctor then ordered twice the amount of that pain medication. I said absolutely not,  hell no, no way. Find another doctor. Well there was no other doctor.

She reported that I would not do as requested so the doctor ordered him to take an extra pill that he usually takes. It is a calming pill. It seemed to work and he fell asleep. He slept for half an hour then was wide a wake, like wired.

The nurse called another nurse and she went home leaving me to wait here with Al for another hour. By now it was after 4am. The new nurse couldn’t seem to do anything with Al. His heart was racing at 282 beats per minute.

It was obvious to me that Al’s burning body was due to the heart going wacky from internal tremors inside the chest wall lining. When the nurse could do no  more she called that same doctor back.

The doctor ordered him into the Hospice House. The ambulance came and got him and left at 6am.

I went to sleep with tears streaming and slept for four hours. Now it is time to start final preparations for Thanksgiving dinner. All I can say today is I miss Al so much. I am dead tired, but I am thankful he is still alive on Thanksgiving Day. He may not be here physically with me but he is in my thoughts constantly.Al and Rhino, Nov 1

A Valuable Lesson


Every evening I call Al at the Hospice House, and every time I hang up I am sad. You ask me why? Because the nurses say he is doing fine.

Tonight I called again and when I heard those same words I blurted out, ” If he is fine there then why isn’t he here? When he is here he cries a lot. He is so sad. Why isn’t he like that there?”

The nurse probably thought I was on crack, asking something like that. It probably sounded like I wanted him to be crying, but of course I don’t.Women_cocaine

After I thought about it a quick second, I explained, ” Oh I don’t want him to cry. I am just trying to figure out why he is happy there and not here.”

She started laughing and I could sense  her relief that I was not the wicked witch of the west.Wicked_witch

She broke it down a little for me and said, ” He does cry here also, but not continuous. He speaks of death here and he says he is afraid to die. I told him that I was afraid to die too, but we all have to do it. Mr. Al, you have to think about the positive and get a way from the negative. Yes, he cries here, plus here he has different aids here at all times. It keeps his mind busy. Also, he doesn’t get out of bed unless he wants to or ask, and he doesn’t ask.”

I listened with intent trying to pick up on anything that may help me here at home with Al, but I wasn’t getting anything to really grab a hold of then she made the comment that put the puzzle pieces together.puzzle-pieces

She asked me one question, do you have kids?

Why yes I have kids, they are all grown up.

She went on with her explanation.” Do you remember when they went a way or they went to Grandma’s house for a week? Remember when you went back to get them and Grandma always said they were angels? Well this is Angel_Wings__Animated__by_Iaenichow Al is too.”

I thought back to my kids when they were little. They would be the best darn kids ever and then suddenly with no warning they were causing me headaches and stressing me out to the max. I couldn’t wait until they went to Grandma’s.

I laughed out loud at my own thoughts and she continued on. ” This is how Al is. He is here. We are strangers, new people to see and get to know. He hasn’t learned how to  press our buttons. Yes, even very ill patients can learn how to press the caregiver’s buttons. He is comfortable with you, where as here, he is still on guard of his actions. This is all there is too it. He is better here just like your kids were when they went to other homes.”

It all made sense. I didn’t want to hang up this time and weep because I wasn’t doing something good enough, or worse yet, discover he liked it elsewhere better than home. The fact is he loves me enough to let all his feelings show here at home. I should feel honored I guess but somehow seeing the sad, depressed side doesn’t thrill me. But, it does make me feel better to know that our life here at home is normal and he loves me enough to let his hair hang down and be free to be himself.hair hang down

I Am Still Standing


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

He Is Home


He just went down for a nap. I can tell Al is definitely slower in movement but less tremors and sweating. I think he did alright on the way home in the ambulance. He even did alright when he was being taken out of it and I heard him talking to the drivers.

Once everything and him were inside and they took off, Al let loose. I thought what in the world? He really didn’t want to come home. But that wasn’t the case at all. He evidently had been holding this in until he got home. His fear and his dismay.

Through sobbing I made it out that the doctor had told him his real diagnosis. I had never told Al because I was afraid he may not comprehend it. The doctor also told Al that he had less than a year to live.

Al and I had talked many times about his life being shortened and seeing Mom, but for some reason hearing it from a doctor was cemented more in his brain. He got it and he was letting me know how it made him feel.

He said that while he was at the Hospice House he spoke to mom and God. He said the two said the same thing, that they are waiting for him. He said once again that  God said he can go now if he is ready.

We talked about how his body lets him know when it has had enough by tremoring worse and sweating. I heard him have labored breathing when he had to stand to be changed. He ate all of his supper with very little tremors.

He even drank his milk by himself. But everything is like watching in a slow motion movie. He slumps more and you can tell the body is not matching with his thoughts. He wants to go to Day Program tomorrow even though I explained what could happen to him. He said he wants to try.

He cried again as he said he was ruining my weekends. He understood pretty well that he may not be able to go out on the weekends if he chose to continue Day Program full-time. I think in the end we are playing it by ear and seeing how he feels. I told him it didn’t bother me not going out on the weekends. I explained that if he gave up one day at the Day Program we had a better chance of going out to eat. I also explained that if I wanted to go out bad enough I could go while he was at Day Program.

As soon as supper was over he wanted to nap. I can tell by his eyes that he is drugged. I guess this is the kicker to having less tremors. We are truly talking about the comfort stage now here at home.awesome-blossombook4AnimatedCandleThoughtandPrayers