26 Hours And Still Awake

Hi my friends. I have now been up for over 26 hours with dozing in between. It is not me only doing this, it is Al too. Hospice says it is a restless syndrome right before the dying. I don’t know what it is and I can’t identify it any other way than fidgety.

Yesterday I posted but then I deleted it. It was a post on my feelings at the moment and not the entire scene. I guess I don’t do well when I have no sleep. I am crabby and can be short-tempered. I cry and I feel guilt at not being able to help Al in any way.

He is in God’s hands now and all I can do is make sure he is dry. Comfort is not something I can give him it seems. No matter what position I place him in he is not comfortable. I can sense his fear of dying but no matter what I try to say to make it feel better, it doesn’t work. Once again I think this is between him and God.

I guess when I am weak I become fearful, and this is why I deleted the post. I kept thinking afterwards, what will my friends think if they learn of me being angry, frustrated and sounding whiny.

Al sleeps about twenty minutes out of a couple of hours. He is on very high doses of medications but they aren’t working. Hospice was here for several hours today. The Hospice minister dropped by to see Al. Al had requested my son to come by a few times. I asked my son to please come over and he did.

The Hospice team, the Doctors and the Pharmacist are all working together and by Monday sometime there is to be a new medication that will enable Al’s body to go into a deeper sleep to help him pass into the dying process.

Al had been begging the Hospice nurse to give him a needle or a shot to end his life, but of course it is illegal here and the nurse told him she could not help him out. This only agitated Al more and this in turn caused more agitation from him.

Many times today I have cried out to God, what are you waiting for? He wants to come home, help him. I can’t sense a God here in our house, or even in Al’s bedroom. It doesn’t mean there isn’t a God here, it just means I feel nothing but tiredness and I feel almost numb anymore.

I have seen Al reaching up to the ceiling with his arms trying to leave. Talk about a tear jerker. It bring tears to my eyes instantly as if I am watching in slow motion a movie that is playing out and I have guessed the ending but have yet to see it.

I am not sure what I am running on. I can only imagine what Al is running on. It must be burnt fumes of earlier energy. Al is wetting extremely heavy. Almost every fifteen minutes he has soaked a brief. He is still drinking and eating but not very much. He has some sort of brown colored stuff that is coming from his mouth.

I keep dabbing it clean with toothettes. His mouth is dry but I imagine part of it is the medicine he is on. He sweats and then he freezes. He stares at me with those big blue eyes and when I asked him what do you want to say, he says nothing.

Rhino the cat will come in and jump on my lap and put his paws on my face or give me a kiss. I know without knowing cat language that Rhino feels the emotions running throughout the house.

I am ready to let Al go. I can no longer stand to watch his suffering and I have told Al many times to please go see Mom and Dad. Al has told me several times today that he loves me with all of his heart. When Randy, my son came to see him, he told him goodbye.

This tore at me so bad I broke out crying right there in front of Al. So life here at our house is its own living hell. It includes a lot of love, heartache, anger, tears, sleepiness, restlessness and any other emotions you can think of.

I will try to post once a day for now. Al does not like to be alone. He can be asleep and as soon as I tip toe out of the room he is wide awake. I love all of you, my friends and I think of you often.DSC00165DSC00162M.S.A. coverM.S.A. logopurple candles

70 thoughts on “26 Hours And Still Awake

  1. Dear Terry, I haven’t had much time lately so I haven’t commented, but I have been following your blogs.

    It is a sad and difficult time for you right now, but it will come to an end. You and Al are in my prayers that the suffering will soon be over.

    God bless you both.



  2. I can only admire your strength, and love for Al. I could never begin to feel how hard this must be for you because I have never been in your shoes. I don’t know what I would do at this time except be there for him. Love him and try and make him as comfortable as possible. You’re an amazing person. I will pray for strength for you and peace for Al.


  3. I don’t know you or your blog much unfortunately, but thank you for taking the time to pour your emotions out. I hope it eases how you feel, writing it out. And thank you for sharing. God is with you, everywhere always… I wish I could say it better.


  4. *hugs* I can only pray for god to take him home, you both have suffered so much. And don’t worry about your last post. 26 hours without real sleep would make any cranky much less a sister who is a sole care giver. I can only hope for peace your house as well.


  5. Terry, the night before my sister died (MSA also), I was so angry at God. “Why don’t You take her? How can You let her suffer anymore?”

    The next morning, God set her free from this horrible disease! We were there with her when she passed.

    May God give Al that sweet freedom soon!


  6. Terry…I was right where you are 6 weeks ago. My husband wanted to be released from this horrific illness too…he looked so much like your brother. On November 6, his breathing became difficult…we both knew he had aspiration pneumonia…4th time in less than a year…he wanted no treatment…his oxygen level dropped and his heart simply stopped. Letting him go was so painful. I admire your strength…the love, encouragement, the care you are giving to your brother. May God be with you and your family during this most difficult time.


    • Oh LeAnn, that makes me so sad to know you have seen and felt the loss of your beloved husband. i wish I could take it all a way, change things. i don’t know or understand why this illness is so full of suffering. It seems worse to me than even cancer, for there are no answers…….Take care my friend. I am always here for you


  7. We love you and Al too – Terry do not try to find God right now, trust me when I say He is with you. When Tom died I felt nothing and I felt abandoned. It was the prayers of everyone else praying for me when I could not pray and especially when I could not feel Gods presence that carried me through those first months and still are carrying me. Let us pray for you – let us lift you up to God – He won’t let you go – He promises to never leave us and He won’t. And we won’t leave you either. {{hugs}}


    • I needed your words Patty. I still hate that you had to lose your precious love of your life, but I am glad that God is helping you at this very important time of your life


  8. Terry, as I said earlier, I know your pain. My dad went through the same dying process only a few short weeks ago. It seems like a lot longer though. I know you have given Al permission to go see his Mom and Dad in heaven, but have you told him that you will be ok? Maybe Al is worried about leaving you. Also, are there any other people he needs to see or make closure with? I know your son came to see him. Know that this time will pass very soon and Al may pass when you are sleeping. Do not be sad because he maybe wanted it that way. Al loves you very much and I cannot tell you enough how special you are to be his sister. God bless you.


    • thank you so much Kathy. I love your comment but hate that only a short time ago you felt the worst loss of all. I have told Al I will be ok and I even made him promise to save a spot beside him for me. Big hugs


  9. Terry, Al will go on time that is not set for us as humans to see. My husband went through this type of situation, I demanded a medication strong enough for my children to see a “peaceful” Dad, not one they did not know. Yes, demand! Within the hour he was sleeping with a peaceful look, the children never knew it was medication, they were at peace because he was not fighting. No one wants to take this journey that Al is on, but we must all travel this necessary path. You still will not sleep, you will keep a close watch for the Angels. Kathy is right, tell Al you are o.k., in all my loss to death, I have repeated these words over and over…”Sleep my darling it’s going to be o.k., tomorrow is going to be a better day”. If tears and prayer help you, you are going to be o.k. for the world is holding you. Your courage to share this sorrow with the world is beyond words…”Yes Al, your sister is going to be o.k.”. Prayers and Hugs, Ann


  10. May the Lord bless you both and give Al the knowledge that his Lord LOVES HIM. Please Lord give him comfort and surround him with your LOVE!! Terry has taken such wonderful care of Al, now it is your turn as only you can provide the next step. Lord, this is a very special family – watch over them as they need you more than ever.


  11. Oh Terry I hurt for you both so much! I send you hugs and continue to pray for you both. If Al will let you get your Bible and read Psalm 23, perhaps it will give him peace to let go. If you continue to read past that one just read the word to him doesn’t matter what as Gods word will ease you both at this time. Sometimes before I open my Bible I just pray and ask God to direct my heart, give me wisdom and understanding and then let my Bible fall open I always read at that spot and the peace, understanding and strength I gain helps, maybe it will help both you and Al. Love and hugs my dear one.


  12. Terry, I tried to comment on the post you deleted, but of course was unable to do so. Instead, I commented on the one you postedFriday or Saturday, as a follow-up to what we had already said. I hope you can find it. I have nothing more to offer you since then, except to assure you and Al of my prayers, and that God sees your need. He never promised us we wouldn’t have trouble; He did promise us that He would walk through it with us. Hugs to you, Terry.


    • I feel as if Al has been taking all that he can. He is now willing himself to quit eating. He is in so much pain. If only they can find a way to stop the pain I don’t think he will want to die so much. Thank you for the prayers my friend


  13. Terry, how I feel your grief. Hours before my mother died of cancer I laid beside her & told her that her whole family was here (as they were) & she had done all she could and it was all right to leave us, we would care for one another. When my daughter died of MSA hospice had her on meds that would kill a horse, but she held on for days. My sons & her daughter took four hour turns sitting next to her. She died when her daughter was on duty & her daughter had fallen asleep. The poor thing felt she had let her Mother down but I have told her that perhaps that was what Holly wanted, to leave Beth in peace. I had taken my husband home as his Alzheimer’s had taken him a step down – I had said my goodbyes so many times & begged & pleaded with God that He would grant her wish to leave this world of suffering. This is how we deal with their death, we cannot bear to see the suffering anymore, we want to see them at peace. You have done all that a loving sibling can do, know that and find peace. All in God’s time. You are always in my thoughts.


    • You understand where I am coming from probably too well. what your family went through is exhausting and so painful. It is so hard to watch someone you love suffer and there is nothing we can do. I do hope God takes him before he gets too much worse


  14. god bless you both in this the last part of his life, leaving earth to go home with Jesus…as hard as it will be, it will be hopefully comforting for you to know he no longer will be suffering. As you are in your own way right now. Only God knows when his room is ready even though at times we here feel it was ready weeks before so that he would be at peace. I give you hugs and many prayers for the times ahead…God bless you all.


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