My Heart Is Broken

I haven’t blogged all day. I had some time to but just couldn’t. It is still hard but I need to. It heals me and gives me a soft place to fall.

Today I spent time with Al at the hospital. Then I went to the grocery store to buy the items needed for Christmas Dinner. Once home and putting the groceries a way I clicked on WP and then turned a way from it.

Now it is almost 8pm and the tears have begun to fall. It is strange how silence and a sense of loneliness come out of the woodwork once darkness falls upon us.

A Specialist, and Doctors along with Hospice had a conference and came to the agreement that there was nothing left to try for Al. They took him off of his remaining medications. The only thing he will remain on is his pain medications.

Al’s body is still continuing to contract. Now when you try to do a brief change or turn him in a new position he reeks in pain. He stutters from the pain medication. I can barely make out any words he is saying.

He realizes I am his sister, he recognizes the time but yet he is floating a little. He fiddled with his sheets, wadding it into a ball.  He picked at them, he was hot than sweaty. He was cranky and irritable.

He is being dismissed tomorrow morning to come home to remain here for what ever time he has remaining. The caregiver will be here and I am so thankful for this.

My heart is broken as I realize that Al will find no peace here on earth while he waits to be taken by God. My heart is broken because all has been tried and all doors are shut now.

I pray for a quick release for him. I pray his pain will be swiftly gone. It just doesn’t seem fair, not fair at all. Being mentally challenged didn’t give him opportunities for girlfriends, marriage, a family of his own. Being ridiculed by his Father sure didn’t make his life any better. Having a heart attack at barely over fifty wasn’t right. But now this, a terrible disease called Multiple System Atrophy, (MSA) is going to drag him to the end. It is going to force Al to endure the wicked pain until his last breath.

I am so glad and feel very honored that I have had these past six years to show Al what fun life could really be. I wish there was something I could do but there is not. I will do my best to bring him comfort. I will read the Bible to him, sing to him and hold his hand. I will continue to tell him how much he is loved. I will not stop until I know he is free of pain.

al and rhino4

Please God, Please Help

I am writing only because I just want to sit down and cry my eyes out. I know I have written enough posts for today but I just have to write one more, this one.

I am so thankful that Al is home. More that I can be the one who watches over him than strangers. I love him where doctors and nurses do not.

Al has not been himself at all today. I have learned through the day that there have been no real expressions from him but tears. I have found out that his vision is awful now. He can not see the wonderful Christmas cards you are sending. He tells me he is dying because he knows he is getting worse.

I don’t think he is getting worse as much as he is suffering the medication changes. He is on too many bad drugs now. It is a war I tell you. A tug and pull war. If Al and I want him to be pain-free, then it is drugs that are used. If we want Al lively then we trade that for pain.

His love for his vintage cars has disappointed him today as he can not even lift one car with his arms. He is so weak that moving him from the bed to a wheelchair is almost impossible. He is just like a bowl of jelly and he feels very heavy with his body being dead weight.

He did eat lunch which is a good thing. He wanted pizza for supper so I ordered it for him. With his appetite not dropping I have hope to carry in my heart. But seeing him like this just sickens me.

Oh dear God please, please take my brother home. I beg of you to not let him suffer anymore. I am assuming that his body is trying to adjust to these new medications but in the mean time, my heart is breaking as I look at a body that Al lives within but I don’t recognize.

When is the point when neither of us can take it anymore. God promises to not give us more than we can handle, but Lord? I feel today that I am at that point. Please hear me speaking Lord. Heal him, either bring him back to me so he can live a little or take him home. I know I can’t boss you God, but I can tell you my inner feelings, so here I am.

Naked and laying at your feet asking for mercy for my poor, sick brother, Al. Amen





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

Not a Good Day For Al

Tomorrow is Thanksgiving and today, this very minute I am thankful for being here at home and not in a hospital with a heart attack or stroke. Today has not been a fun day. Al woke up with pains.

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 rose

I Am So Honored, A Nomination For Being A Caregiver

A company called Wego Health has just informed me I have been nominated for an award for best of show.  I didn’t know much about it so I read more information.

Evidently this company reads my blogs and they feel that I am an advocate for patient care. They think I do a good job in caring for my brother. I don’t know what if anything happens from here. Even if nothing, I am quite humbled and honored to be nominated period.

I just wanted to share what I found out. I am so proud that M.S.A. is getting noticed by my blogging.

WEGO Health

WEGO Health


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