Monthly Archives: January 2014
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Tombstone Fundraiser
I have a fundraiser where I am trying to get help for Al’s tombstone. I have the funeral paid for…
Tombstone Fundraiser
I have a fundraiser where I am trying to get help for Al’s tombstone. I have the funeral paid for and the plot, but I can’t seem to get the funds for his tombstone. I realize he doesn’t have to have one, but I want him to because I love him. Here is the link if you would be interested. Please share this with anyone you think may help.
Thanks my friends.
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I Lost It
It’s been a couple of day since I have written. The reason why is shame. Shame on how I fell apart.…
I Lost It
It’s been a couple of day since I have written. The reason why is shame. Shame on how I fell apart. The knowledge of knowing someone saw me at my weakest. Seeing Al still show signs of leaving this earth and yet he is still here, lingering for what?, I don’t know.
Yesterday my girlfriend arrived. I had already been suffering from fighting off the panic attacks from returning from 20 years ago. Fighting to stay strong through seeing my brother fade from this earth.
The truth is my friends, that although I know that having Al in heaven is the most blessed reward, I can’t handle him leaving me. It is the most selfish and yet human feelings I have felt in some time.
I started feeling and becoming worried over the little things I was feeling inside. A warm feeling would go through me from head to toe. I would get dizzy and as this progressed so did my fear. Fear of dying, fear of leaving this earth before Al.
As I obsessed I was able to, without trying, to allow my blood pressure get to a dangerous point of a stroke. The harder I tried to calm myself, the higher it climbed. I was out of control and even with my girlfriend here at my side, I couldn’t fight what was happening. I was losing the battle and needed help.
Seeing my brother’s lips turn to a purple/blue didn’t help matters. My diabetic numbers bottomed out, forcing me to have to live the rest of the day with trying to recoup from this.
Hospice nurse arrived mid-evening and checked on Al. No one really knows why he is still lingering. I have to say that God is the only one, and maybe some day I will understand this whole ugly mess.
The nurse checked my blood pressure and then instructed me to call my Doctor. I did do that and he had me take an extra pill which helped but I couldn’t rid the anxiety I was feeling.
The truth is I am an excellent caregiver but an absolute failure at caring for myself. I have always thought I can conquer all. I can fix anything, and yet there I was a total mess, right in front of my friend, to boot.
I called the doctor first thing this morning and got an appointment for today at noon. My friend took me and as soon as I saw my wonderful friend, the doctor, I broke down into a pot of tears.
He blamed my sugar ups and downs and my stress all on being a caregiver for a brother. He wasn’t angry at me. He did let me no in no uncertain terms that stress can kill. He prescribed me a medication that will help with anxiety, and told me not to take the extra blood pressure pill.
I took it after getting it filled and it helped. Early this evening the feelings came back and I took another. It does help but doesn’t make me loony. It just takes the edge off. I am a different person tonight. I am still very tired, drained and worn out. I slept this afternoon and will most likely sleep tonight.
Al lays in his bed fighting to die and I lay in my bed fighting to live. I pray God realizes that I am a weak creature. My strength is becoming weaker. Al wants to desperately go to heaven, and I want this over for the both of us.
Al hasn’t spoken in a few days. Tonight he opened his mouth for food but couldn’t really help in keeping it in, so we sort of made a mess with him eating. He is still eating but mainly baby food. His swelling was down in his hands last night, but back today.
The infection we thought was being controlled is not working. It was back in full force. The facts are the illness of MSA, Multiple System Atrophy, is so full inside of Al, that it is seeping out of his body.
Although we turn him regularly, his skin is breaking down. Sores are appearing that we fight with medications. Most of the time he doesn’t realize I am in the room. On a good moment his eyes will follow me. Sometimes he will watch the TV, but most times he sleeps through it.
Faye, one of the caregivers brought him a wonderful set of The Three Stooges DVD’s. I have it playing a lot for him because I know if Al was truly here with me, he would be laughing right now and calling me in the room to say, ” Look at this Terry, look at this. Isn’t this funny?”
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Vomit or Blog It
Yesterday when Hospice was here, the nurse and I had a conversation alone out of Al’s bedroom. She…
Vomit or Blog It
Yesterday when Hospice was here, the nurse and I had a conversation alone out of Al’s bedroom. She told me it was time to get Al’s clothes together for what I wished him to wear at his funeral.
She told me to get around several photos of Al, and the funeral home would put together a video that would be shown to others walking in. This was all hard for me to swallow. I decided to wait until tomorrow and have my girlfriend help me with this.
I was so excited last night when the phone rang and it was my girlfriend letting me know she was returning for another visit with me. I don’t know what I would do without her. She is just the best.
But during the conversation between the nurse and I, she made a comment that made me want to run to the bathroom and vomit. Pictures flew through my mind and they were not pretty at all.
The nurse didn’t smile or laugh. She seemed very serious. I pondered on her words all day. I finally forced myself to walk to the mailbox and check my mail. I had to get out of the house.
Al was sleeping so I took the ten minutes to walk and snap a few photos. I will post those at the end of this post.
Last night Al didn’t go to sleep until about 3am. I was so tired after having the night before being about the same and no caregiver for two days. I tried sleeping in my recliner but my mind kept going back to our conversation earlier.
I couldn’t sleep in my bed so I laid down on the couch. I finally fell asleep only to be woken by nightmares. The nightmares were of our conversation earlier that day. I stumbled through the night with restless sleep and recurring nightmares.
The caregiver came today and by noon I could hardly keep my eyes open. I had to lay down. I excused myself and laid on the couch. I think because the caregiver was here I went to sleep immediately.
Tonight I am trying very hard to forget what that nurse said, but it is hard. I finally decided to blog my thoughts, hoping between your comments to come and lack of sleep I can get by until tomorrow when my friend arrives.
Do you want to know what the nurse told me? She said so matter-of-fact, that when the hearse comes to take Al’s body, they will put it in the back of the car and then go from place to place, and pile these bodies up and together in the back of that car.
All I could see is Al, my baby brother, being crushed and mauled by other deceased bodies. Even thinking about it now makes me want to vomit. Is this the way it really happens?
If not, why did she comment with it. I would give anything to have been deaf when she spoke. Even if for some chance she was trying to get a smile out of me or lighten the death coming, it didn’t sit well with me at all.
This is my brother, the one I have cared for, for six years, fighting this terrible MSA. I don’t want to hear this crap. I am not accustomed to working with death like Hospice is.
There, I got it out, now I hope it helps me to sleep tonight.
Who I am 