I want to take a moment and give my heart of thanks to all who helped with the donation of monies to purchase my brother’s tombstone. I can not express my gratitude enough for what you have done.
Here is the link to what people did for Al.
https://www.giveforward.com/fundraiser/4gx3/burial-expense-tombstone
For a couple of weeks now I have been introduced to the reality of dying and how food and water affect the process. I preferred to ignore this new idea given to me. After all I was not going to do anything that may make my brother feel I was nothing less than a good sister.
We all know that I have done everything in my power to grant Al all of his dreams and wishes before he leaves this earth. I have probably been the worst at spoiling an adult. I have purchased everything he mentioned, only to see that smile one more time.
Now for the past few weeks Hospice, me and my caregiver can not figure out why Al is still lingering. Oh, please don’t get me wrong. I would have Al stay here if I thought there was a chance in hell he could be cured. But, on the other side God would be the one to provide this amazing miracle and I believe in my heart God has a more important job for him to do in heaven than laying in his air bed.
In these past few weeks we have fought this big bully called MSA. It has shown its ugly fangs. It has done its best to escape any opening it can. It has filled every gap possible inside his body.
For the past eight days Al has kept a temperature. I was able to keep it at a normal temp by using medications, but no longer. We have went from forks and spoons, straws to now syringes for feeding.
Since he is still staying behind, now he is aspirating into his lungs. Every syringe of food and water goes directly to the lungs. There is no pass jail and no collecting of two hundred dollars.
On this past Friday, Hospice stated that Al’s pulse is very weak. Saturday evening Al was breathing very shallow. This is the only was I knew for sure he was still with me as I could find no heart beat and no pulse.
Today the nurse did her thing and then told me to come out to the living room. Uh oh, there’s that tone. I am in trouble. We sat down and she placed her hands in her lap. She took a deep sigh and she closed her eyes for a moment. I know others may not think anything about this part, but I know her well enough to know she was praying for the right words to get through my thick skull.
She started the conversation off with the fact Al is gasping from air and taking huge breaths of air. She said this illness has told the brain to not acknowledge that Al needs to breathe. Then it kicks in reminding him to breathe, thus the big gasping effects.
She said that his pulse and heart beat are weak. Then she stopped and I think she prayed one more silent prayer. She then looked at me and said, ” You need to do as we tell you Missy, so Al can go home.”
I thought, ” What did I do wrong? I try my best to be there for Al.” She continued on with,” Al is ready to go home, but with your constant feeding him and giving him so much liquid, the body is desperately trying to revive its use over and over, but it fails. This in return causes Al more discomfort and misery.”
Of course the little girl inside of me began to drop a few tears. How could I not feed my brother? How could I starve him?
She then went on to say, ” Al’s body is so sick. It doesn’t need as much food and liquid like it used to. You need to go in at meal times and ask him if he is hungry. If he says no, leave it alone. Don’t try to force him to eat. If he says yes, offer him a few bites of whatever he wishes for. It will be enough to satisfy him. Or give him the sherbet. It will make his dry mouth feel better. As for the water, give him a half of syringe. Terry, you don’t want him to aspirate to death. This would be a very painful way to die.”
The last sentence she said must have hit me hard. I already had thought for months that Al was struggling to fight this nasty disease. But for me to add to the problem, for me to be any part of him not seeing heaven, was too much for me to bear.
I decided right there and then I would follow her suggestions. For lunch today, he did refuse but he took a half a syringe of water. For supper his answer was yes, he wanted soup. I had made home-made chicken and noodle soup today. I pureed some of it and gave him three syringe full of it and one syringe full of water.
He did not complain nor say a word. He seemed content. I breathed a little sigh of relief as I walked out of his room. He was alright. He wasn’t starving. He is sick and he is ready to go to heaven. He had a bite of food and he was satisfied. I no longer feel the very heavy guilt I had carried previously. I am now able to look at it as helping Al to reach his goal.
Fire In My Veins
The sun has set
The world gone still
A chill in my veins
As I wait for you
To walk through that door
To be mine once more
The fire shall burn
The flames shall warm
As I walk into your arms
Once again.
Written by,
Terry Shepherd
03.03.2014
It was a crazy weekend for sure. For one, the silence was deafening. Thankfully, my girlfriend calls me nightly. Last night, Sunday, Al was so uncomfortable. He was in pain and no matter what I gave him, it didn’t take it completely away.
He fought a temp all weekend. Even with his fever and pain medications the fever was still there. I didn’t get to go to bed on time. Al had every right to…
It was a crazy weekend for sure. For one, the silence was deafening. Thankfully, my girlfriend calls me nightly. Last night, Sunday, Al was so uncomfortable. He was in pain and no matter what I gave him, it didn’t take it completely away.
He fought a temp all weekend. Even with his fever and pain medications the fever was still there. I didn’t get to go to bed on time. Al had every right to complain, he is the one feeling it, but boy, did I want to go to bed.
Then during the night I had been asleep about two hours when I must have had a nightmare. http://www.nightmaresanddreams.com/
I heard people marching. I mean it was so loud I instantly sat up in bed. I could feel my heart racing. It felt like it was beating in my throat.
I sat frozen in spot, listening. I was first thinking is this the way Al went home? The horses or men or whoever it was had come to get Al, and yet I sat there frightened as a mouse being caught with cheese.
After a spell went by I realized I had been dreaming so I laid back down and went back to sleep. Oh, I should say I did check Al and all was alright. About a half an hour later I was woken up again. This time I was hearing bells. No, not bells like bells in my belfry, lol, but more like chime bells.
I didn’t sit up in fright as it was such a nice chime but laid there listening for more, but nothing. By the time I went back to sleep I was figuring I would get about two more hours of sleep, if I was lucky.
I woke up in time to let the shower girl in and wanted to go back to bed and die from lack of sleep but that didn’t happen either. The phone rang three times. The nurse showed up. The caregiver arrived.
I then remembered it was Monday and I had three bills to pay sitting at the computer. I made the phone calls and paid two of them. On the third one, my cell bill, the automated was messed up.
The empty person’s voice couldn’t detect the information I was putting in. So then it tried to give me a temporary pin number to proceed but of course when I punched those numbers in, it couldn’t hear me.
I was then switched to this, listen to me, a LIVE voice. Yes, a real person. I told her what happened and then she said she was so happy to help me. She asked the usual, name, address etc. Then she asked me for the kind of phone I had.
I told her what it was but she wasn’t satisfied. She wanted the serial number. I explained that my phone is generic and if I pull the back off she would disappear from the conversation.
She told me to look up my account on my bill. With a false smile I explained that I have been on contract with them for nearly two years. I told her that for the first three months of being with them I had called in and reported that I was not receiving any online statement from them.
She was frustrated that I didn’t know crap about my name of my phone and put me on hold for some time. I hadn’t had my medicine for my Diabetes yet. I was hungry. I was tired, and my pet peeve is being put on hold.
After some silence, I didn’t even get the elevator music, gees, she came back online. She verified my home address and said she would start having my bills sent snail mail. Under my breath I whispered, why didn’t you do that a year and a half ago. Wow, a few months before the contract ends, I am going to actually get a bill!
I thanked her for her help and paid my bill. When we finished our lovely conversation I looked at the time I was on the phone with her and it had been thirty-one minutes. Oh my gosh, that long? And all this was over the fact that their automated system didn’t work good today.
So here it is 1pm in the afternoon. The caregiver went to Taco Bell to get lunch and she brought me back some Tacos too. I am still in my pajamas. I haven’t washed my face nor brushed my hair, and she leaves at 3pm.
So much for my Monday. Is it Tuesday yet?
I am So Sorry, I Didn’t Mean For This to Happen
I have never felt so low and so bad as I do right now. I was writing a prompt, and I wrote about a vision I could picture in my mind. I stated in the first sentence that this was fabricated, but as Al has stated, I should have put it in bold letters.
I have earned my friendships on here and now I have probably lost so many friends because of this post. I sincerely was writing about the beautiful…
Who I am 