Daily Archives: December 1, 2013

The Lump in my Throat

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As I have stated before I am weak when it comes to people I love. I am writing this post to help heal my heart so that I will be able to sleep tonight.

When Al has had to go to Hospice house before he has a certain amount of time that he can stay.Hospice_house_lead_w_caption I pretty well know when he is returning.

But this Hospice visit is different. He is there only for medication management.

The Doctor sees Al daily at least once per day. I know that Al has had bouts of pain issues, irritability, tears and sorrow since he has been there.

I know that they have removed the nasty drug he was on and replaced it with a more nasty drug. They have removed that one and started a new one twice now. They have doubled at times and changed at others.

Today he has not had any problems. He has had very little pain. He seems to be holding his own. So I have two issues going on in my head.

1. I always had this invisible line in my head. I knew at some point when Al is in the active dying stage that I didn’t care what they gave him. He wouldn’t care at that point. Life would not mean as much to him, nor his cars or coca cola. But he isn’t in the active dying stage yet. That is the next stage he will go into. So my issue is how does he have quality life now? How does he enjoy anything and how can I keep him so he knows who I am and what is going on? When does that line disappear and we go to comfort all the way at any expense?

2. I was so totally confident that he would be coming home tomorrow. The nurse and I just spoke on the phone. She said in her opinion he is ready to come home but it is  up to the doctor and the doctor has to discharge him. Wow, what a disappointment in my heart.

But do I want him home and then he suddenly has to go back because his pain is not in control? Will he come home being so-called out of it? I must wait, it is the right thing to do, but my heart doesn’t like it. Rhino our cat doesn’t like it.

I know that they took Al off the nasty medication he was on here and put him on a different nasty drug with terrible side effects. Then they took him off of that when that didn’t work and put him on a new one. Then they had to double that dose because that didn’t work. Now today they have tried a brand new one. She said he seems to be better now.

I feel so bad for him. I know that when I am sick I just suffer like the rest of us and pray for the day I am better. For Al, he has suffered for a year now with pain getting worse by the month. How he must feel exhausted and worn out. How his spirit must sometimes feel like giving up, dealing with the aggravating pain and all the side effects of the medications.

A year and a half ago Al still walked. He didn’t need a cane. We didn’t need a wheelchair ramp. We didn’t have wheelchairs or hospital beds. He was able to go to the restroom by himself, feed himself, dress himself. Now this little bit of time later he is totally dependent on me.

He can no longer stand safely. If I do get him up he stands on his heels because his feet are so contracted. 90% of the time he needs to be fed. He wears briefs at all times now. He can’t ride his scooter or push himself in his wheelchair. He chokes at times. His breathing is usually labored at different levels. He has to be bathed and dressed. It is the fastest moving illness I have ever seen in my 23 years of medical experience. I hate MSA. If you look it up online you will see the terrible information that says they don’t know why these patients get it nor do they have a way to stop it.

I just wish I could do something to rid all of this from him. I know, only God knows the reason for all of this. I am only human but I have a very active heart when it comes to feeling emotions.

When she and I hung up I just wanted to sit down here and cry. My eyes welled and a lump in my throat appeared, but I know Al needs to be at some point of comfort before they will release him.

I can’t help it though. I miss him and still hope God allows him to come home tomorrow. I have such empathy for all patients that are terminally ill. I pray that when my time comes I just lay down and go to sleep. If I get an illness I hope it is short-lived.

Medications can help but with their strong side effects when you are dealing with several medications can  sometimes do more damage than the illness but you can’t let him or anyone suffer in great pain either.

Well it helped me, the lump in my throat is still there, but the eyes are still moist. Let’s hope that Al has a nice Christmas, right here at home.

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Christmas Cards

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I want to thank Bonnie Llewellyn. She not only sent Al a card with cute little birdhouses and birds, she also sent me a card. For some reason she thinks I may be on the naughty list. I thought that was such a cute card and I thank-you Bonnie for making me laugh today.

I want to thank Renee and Ed, of Photographic Memories, LLC for a beautiful card they sent to Al. It is a blue and brown card with the three wise men on camels. It is gorgeous. Thank-you Renee and Ed.

I want to thank Marlene and Little Binky. An adorable black and white cat. It is a beautiful card with photos of Melanie and Binky. We love it and thank-you Melanie.

All who have sent cards I want you to know how much Al loves them. He holds them and looks at the pictures. I read them all to him as his sight is not that good any longer. He holds your cards for hours.

If anyone else still wants to send him a card, please email me at

tellmenolies2004@yahoo.com

for the mailing address.

I will never forget the kind gestures you have done to help make his Christmas brighter.

Al is still in the hospice hospital. They are having some issues on getting the right pain medications to manage his  pain. I think the problem is his pain is bigger than the illness and all of the medications out there. They have tried different ones. They work and then they stop.

I am thinking he is coming home tomorrow but I am not positive since he is in there for medication management. Please keep him in your prayers. He has great pain in his shoulders, neck and feet as his body is contracting from MSA.

When I try to stand him to change him he can no longer stand on his feet. They are so contracted he ends up on his heels which causes great imbalance problems. This illness is not going to stop until it has caused every part of his body internally and externally to contract and stop.

I just hate watching this. With all the progress doctors and scientists have made they still do not have any kind of cure for this ugly and painful disease.

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