Not a Good Day For Al
Tomorrow is Thanksgivingand today, this very minute I am thankful for being here at home and not in…
Pains everywhere from his feet to his neck. He struggled with breathing. Even when the Hospice nurse came today Al showed signs of breathing difficulties and pain. I don’t understand. I just don’t understand how they brush it off.
As his sister it was hard not to get overly stressed. He went through periods of burning all over he said to heavy sweating, to not eating. The helper was here today and she not only helped Al she helped keep me calm.
I got dizzy so much. My sugars dropped. I ate to bring the numbers back up and started to feel better than Al would start into a whole episode of pain all over. His head hangs so far down on his chest with all his skin hanging there it makes it so difficult to hear and understand him. His legs are contracting, his feet are contracting. His one arm won’t work anymore. It is just hard for me to watch.
This afternoon he started sounding like he was aspirating some. It looked like his mouth was drooping and he was drooling real bad. Breathing was hard. I finally called Hospice back and asked for a nurse to come. The charge nurse said alright but a few minutes later she called me back.
She stated the nurse that had been here three hours ago said when she left Al was nice and calm, that maybe I just wanted him to go to the Hospice house. I exploded over the phone.
That conversation of the Hospice house had been brought up with the nurse earlier today that was here and I made it perfectly clear that I wanted Al home for Thanksgiving. I was mad that this nurse of Al’s would imply this after our conversation.
I started yelling at the charge nurse. I don’t know if Al will be discharged from this Hospice or not for my yelling at her but stress, worry and crazy words from her made me tell her about MSA and how it can change hour to hour.
She said she would document that I called and the symptoms I had told her. Al was given higher doses of pain medications and he finally fell asleep.
I keep asking these professionals, what is happening? what is happening? I don’t think anyone knows. I think they suspect that I will just go with the flow. Maybe a part of them is right, he has this disease that is incurable and there is no way to help any longer except pain medications, but does that mean I understand?
I am scared when Al gets like this. I can’t help it. Burning all over, pain levels that are higher than a six out of ten. Not eating, tears, crimson face, sounding like he’s aspirating?
The helper is going to come tomorrow to get Al up and see how he is. I told her she then needs to go home and be with her own family for the holiday. I am tired, and am thankful that I got so much of the food preparation done for tomorrow.
I am thankful for being here and Al being here with me, but I am scared, I can’t help it. I feel like I am walking in a dark room feeling for familiar things but there aren’t any, and when I don’t have Hospice nurses to count on, I feel totally alone and lost.
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.
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.
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.
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.
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 how 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.
I Am Still Standing
I live in such a small speck of the world and yet news travels quickly from within these walls. A…
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.
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………….