Robe or Clothes

Hi my friends. I sit here not feeling the best. I am cold and a little dizzy. My blood pressure seems to be alright and my sugars are normal and yet I feel like crap. I imagine part of it is the weather and my nose and sinuses do not care for the heat on in the house.

The other part is probably just me being drained, tired and exhausted. I ran yesterday, Thanksgiving on four hours of sleep. I crashed at 9pm and slept until 8am this morning. I felt fine when I got up and then about an hour later started feeling like crap again.

I called the Hospice house last night to check on Al. The nurse said he had not had a good day, but at this time in the evening he was starting to calm down. I learned they had changed his one pain medication to another.

I had thrown such a terrible fit about them trying to drug him up so bad they discontinued that drug and changed it to another. But the issue is bigger than that. You have a patient who is in pain 24/7. His body is constantly contracting and shrinking.

Muscles are hurting from non-use and then you have these terrible medications that can actually make a body worse. Hyper or slowed to the point of barely moving.

For me I find myself having to make decisions for another soul. Although his life is truly in God’s hands I play a big part in it too. The quality of life is the teeter totter. Balancing between comfort and someone you begin to not recognize in order to get that comfort.

This to me is stress at it’s best, which like I said before, is probably playing a big role in why I don’t feel good. Just because Al isn’t here, doesn’t mean my own body is in a stage of miracle healing. The side effects of being a caregiver can take time to heal to a point of what it was before.

I called Hospice again this morning to check on Al. They stated they can not get him up to go to the bathroom because he is too weak. This is what I am talking about with the medications.

Is it the MSA progressing to the point that he can’t stand or is it the side effects of the new drug. I hate it when they express they are giving him a new drug, which in truth is just another name for the same drug.

Same family of medications, but more severe side effects. I researched it to death this morning and it is dangerous. So where does the teeter become less tottering? I don’t know.

The helper is coming over today for a while, while  Al isn’t here. We are going to try to arrange his  room so a wheelchair and things he needs in there are easily obtained. I hope we can figure everything out.

Al throws such a fit and I also realize how much his vintage cars and coca cola mean to him. I also realize that while he is in bed more and more he enjoys looking at his treasures. But then you have the issue of needing more space as he is taken care of more in his bed.

The wheelchair needs to be able to have enough space for when he needs it and the caregivers need space also, so we shall see what we can come up with for the benefit of Al and me.

With Thanksgiving being over I have decided to be lazy today. I didn’t go to any stampede black Friday sales last night or this morning. I am still in my robe. I am expecting a delivery for supplies for Al. I really don’t give a hoot if I answer the door to him dressed this way or not. Who cares? If he wants to take mental note that a caregiver answered the door in a robe, so be it. Let him try being a caregiver.

The sun is shining and I am trying to get my mood and smiles to shine also. It is  hard though, I am just plain tired. Al will probably be home Monday, so I will tend to relax, clean his room, and maybe squeeze some time in Christmas shopping, who knows,,,,maybe I will just stay in my robe until Monday.robe


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

I Wish I Was A Robot

As you know from my post this morning today has not been one of Al’s good days. Moving to the noon hour I met the Hospice nurse at Al’s Day Program and we both went to see Al. He was no better. I would say he was worse because he was crying.

The nurse tried to talk to him but he could not be understood. His blood pressure was on the high side but this was attributed to his being so emotional.

He was on a high pain level and had already been given his pain medication. The nurse gave it to him again and an anxiety pill. I hope it worked because when she and I left he was still not good.

I tried to get him to stay home but he didn’t want to. The nurse told me it was time to start speaking for him. The Hospice doctor had previously stated that Al would go down faster if he remained going to the Day Program and Al was explained this.

He wants to socialize so bad he is willing to risk his life; but there is a part of me that wonders if he really understands what he is doing to himself being mentally challenged.

The nurse saw me holding back with my answer. I am sorry it is so hard to take a way from him what he wants so bad. This is all that he has left; his Day Program;  at least in his eyes.

I know that Al has bad and good days, and I see the bad days slipping in more and more. The nurse told me Al was about bed-bound ready. This threw me back. Am I that naive? Do I not want to recognize he is so ill? Maybe I carry more hope than I should.

To take a way from him made me start to cry. The nurse took over which I guess was a good thing. Starting next  Monday, Wednesday and Fridays Al will not be picked up until 10:40 am instead of 8:45 because of a new shower gal. So what the nurse did was decided for him to start staying home Tuesdays and Thursdays all together.

I think from what she said she is going to have the gentleman who is the Social Service worker with Hospice tell Al that he needs to cut his days down. She thinks him hearing the news from a guy will go over better.

I wish I was a robot, no heart, no feelings, no nothing. There are live people walking around like that but I am not one of them. To me, this is one more step towards Al’s end of life. I admit his body can’t take it. The bus ride, pretty much being awake all day, but the flip side is Al’s livelihood, what’s left, bed and TV and the rotten M.S.A.robotand a little bit of Day Program.

Third Night’s a Charm

I know what people mean when the describe the good and the bad days, when there is a terminal illness. I have seen them both. It used to be good days most of the time. Now it is good days part of the time mixed up with a couple bad drinks swallowed leaving a sour taste in my mouth.

When Al came home from the Hospice house it was let’s throw a party time. Decorate the bedroom with coca cola streamers. Put the party hats on. Get the blow horns out. By Sunday the new medication that he was put on disappeared. It was like a magic show that stopped short in the middle of the act.magic showparty hats Put the party hats a way, tear down the streamers, because the party has just moved on.

Put on the sad face.sad-face Place the night-cap on because it is going to be a long night.night cap

This is exactly what happened Sunday and Monday evenings.

I didn’t go outside and enjoy the stars.flashing star I didn’t sit around the campfire shooting the shit.july 4th firepit

I stayed inside and listened to screams of wanting to die. I heard moans of pains.

The tremors and sweating were back in full force. Monday they were not quite as bad, but because of Al not having a Sphincter muscle sphincter muscleand the amount of pain pills he takespain pills he became constipated yesterday.constipation-3

After trying all the prescriptions I had on hand for him, plus the prune juice, apple juice and M.O.M. I was forced to once again call the nurse.telephoneNURSE JACKIE

It took a while but with the help of her and what she brought, Al found some relief.

Two nights in a row, we didn’t get to bed until 1a.m. Two nights in a row the Hospice nurse has been here.

Two nights in a row Al and I fell into bed exhausted.

I tried to get him to stay home today from day program, but he would not consider it. He was more like a rag doll this morning. Slow, mushy and no expressions.rag doll

I am hoping that he is laying back in his new wheelchair snoozing and I can tell you that I am hitting the couch as soon as I say goodbye to all of you.

I still have faith though. I have faith that this illness, M.S.A. needs a break and that tonight, it will be better.

Good night friends, I am off for a nap.

The Truth Hurts

Are you getting tired of hearing about Al? Just let me know and I will force myself to find something else to talk about. I promised myself that I would write on the Daily Prompt tonight but I had to write about Al once again.

He came home in a really good mood. Three cheers for Al!dancing pig

Now you may not think this is important, but to Al it is very important. He went poo today. Actually he has gone poo three days in a row.

He somewhere became obsessed about it when he was in the nursing home. If he doesn’t go every day he just gets very upset. So three days in a row, wow, he thought.

He had a new pain patch on this morning, so he is getting good doses of pain medication today. He got new gifts from me when he came home. He told me, he was the luckiest dog in the world. He went poo and got coca cola gifts. Wow, did this warm my heart.Al July 11Al july 11 2Al july 11 3

He was chattering a way about his day and then said, “I think the illness is going a way. I think I am really lucky.”

Now I didn’t expect that remark from someone who is constantly wanting to die. It was nice to see his spirits up and we both talked about it, but in the back of my mind I was sad for him, because I knew the illness was here to stay.

After supper I got him all washed up and he was tired and wanted to take a nap. Usually when I put him to bed he struggles terribly but he can scoot himself over to the side so I can then flip him over and put a pillow behind him. He loves to sleep in his side.

But tonight he couldn’t do it. No matter how hard and long he tried the sweat poured, the body shook and he couldn’t do it. He looked at me through tear-filled eyes and said, ” I guess it made a fool out of me. The illness is not going to go anywhere. It is going to stay until I die.”

He cried and I sat on the edge of the bed and held his hand while he wept. Then with my prompting of taking deep breaths and thinking about Mom I got him to relax and he drifted to sleep.