Tne Next Step in M.S.A.


Ever since Al came home last evening something hasn’t been right. Setting aside the fact that I could see he was very weak, I also tribute this to the fact he has been in a bed for five days.

But there is something else and I could not put my finger quite on it. Now that Al has been here all night and today I see a little more issues. Breathing for Al is difficult even when I am not moving him.

I did get him out of bed today. I pushed him to the kitchen table and he ate. He didn’t want me to feed him but it took him an hour to eat, but it’s alright, we weren’t going anywhere today.

The Hospice nurse came today to see Al. She checked him over. Al could not take his deep breaths like he needed to do so she could listen to his lungs. He leaned to the side and didn’t sit up straight. His voice is so soft and he doesn’t articulate his words so understanding him is very difficult.

Today I have seen him breathing deeply. He is struggling and I am giving him medication to help with this. I just checked on him and he is actually stopping breathing and then breathing again. It is not like that special breathing at the end of life, but very similar.

The Hospice Doctor and the nurse, and Hospice House all agreed that it was time for the next step. I have dreaded this for months and now it is here.

He can still go to Day Program if he can function here at home enough to go. I know he wants to go pretty bad tomorrow as they are having a Halloween party. I hope he can go too for his sake.

The other decision that was made is all of his medications minus pain and seizure and BM aides have been put a way now. Writing that sentence about rips me  in half. I am not dumb. I know what that means.

I want to write more, but I can’t write now. I just can’t deal with it, sorry.

Hugs to all of you who support Al and me, who have stood by our sides. I know you will each understand why I have to cut this short.waxpurple candlessnoopy

49 thoughts on “Tne Next Step in M.S.A.

  1. I have been keeping up with all that’s going on and my heart aches for you. I’ve not been able to write much on my own blog because Kelly and I have been back and forth to the UNC Cancer Hospital — he had to have a bone marrow biopsy because his blood work didn’t look right last week. Still waiting on his results to see if the leukemia is back. I wish I could be there to hug you. I know change is hard. Uncertainties will mess with your mind. Every corner you have to turn brings a little fear. So I understand and I’m praying for you. Love, Sandy

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    • that is the worst for me, the guessing, the I don’t knows, the everything is not set in stone, the watching. Our dad died of Leukemia. He was a heart patient so he could not have the bone marrow. I wish all the best to you

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    • Don’t feel bad Al, I sit here and never can think of any good answers or anything that makes sense. I am starting to feel I am just rambling on like an injured animal. Keep posting your great photos. I wish they were all on my walls. Your blog brings me an inner peace. I just love photography

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      • Just typing about it will bring you a little comfort because “a problem shared is a problem halved”. I will carry on doing my photos until I decide to give up blogging then 🙂

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      • don’t give up blogging and photos until you take that photo I am waiting for you to take. The one that describes how I feel about my brother and the fight through M.S.A. I want to buy it then

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  2. I don’t know what to say here Terry. I have no idea what you are going through nor do I know what Al is going through. All I do know is my heart aches for you both and I am keeping you both in my prayers…may his journey home be an easy one and may you have the strength to cope with the coming days. Love and prayers my friend. (((xx)))

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      • Don’t spin, see what happens and stay calm and in control, Al needs that. When you feel like spinning, stop for a hug from me and think. A very big “don’t let go hug” ♥

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  3. *giant hugs* I’ve been crying on and off all week from hearing others bad news, and dealing with my own heartbreak. Oh terry, if we were closer I would lend you my shoulder. You have my virtual shoulder, don’t worry about snotting on it. I’ve snuggled and snotted on several shirts in the past few days. *hugs*

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    • My dearest friend, I would be glad to give you my shoulder also. It seems to be quite sturdy to hold all of my emotions up. Yes, if we were closer things would be so much better

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  4. I am a nursing assistant and be glad to help anyway I can, if you have any questions. I have many clients die in my years and it it never easy, but much better when we trust in God. Life at this stage is very tough, but God will see you through. He knows the beginning from the end and it will be all worth it, when we see Jesus. I pray for both of you. Much love.

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  5. I guess you knew this time would eventually come… but it has to be heart-wrenching to see it…Remember .. (i know you do) but to tell Al that so many are thinking and praying for him…. because he is so special! as are you Terry.. Diane

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  6. Terry dear~ Calm your heart, let God be God; trust your Father in heaven & his timing. If you ever want to chat on google ~email me and I’ll get on google ~ I’m praying for you both. Fear not, doubt not. Everything IS in order despite our finite perception ~ xoxo

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    • It is hard my friend to do. Taking a way his medications means there is no more meds that can help him. I had to feed him tonight and he struggled to breathe just eating

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