Hospice Nurse Just Left

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What I suspected was confirmed by the nurse. The illness, M.S.A. is more powerful than medications. The medicine quit working already.

It is up to Al whether he wants to continue to go to the day program or not. He will suffer from going, but I have to wonder which suffering will be worse? His suffering from M.S.A. or the alternative suffering from being bed bound.

A call was placed to the Hospice doctor. I hated it. They are considering upping his pain patch and pain liquids. Al is getting closer to not being able to determine what is going on around him.

This was always my worst nightmare of all. The icing on the cake. Seeing him get to the point of being out of it. He is refusing supper as he did lunch. He did eat a part of a banana muffin earlier and I talked him into drinking an ensure mixed with ice-cream.

Darn, darn, darn this illness. When I heard Al telling the nurse through sobs, ” I don’t want to live anymore. I am tired of this crap. The next time Mom reaches her hand down from heaven, I am grabbing hold of it. I am ready to go.”

I can’t help it friends. Hearing and seeing him like this just breaks my heart in half. I just want to sleep and sleep and not ever wake up  until this night mare is over.broken heart

67 thoughts on “Hospice Nurse Just Left”

    • thank you so much Tony. Although I don’t physically get a work out like in a gym, my emotional work out is far harder and more wearing, but I must continue on for Al’s sake. I just wish I could do something

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  4. My dear one, my heart cries out for you. While it may seem like such a hard task, you have been blessed to serve as Al’s armor-bearer. Consider the story of Moses when his people were going to war: so long as he kept his arms raised, his army succeeded; when he got so tired he thought he would fail, the Lord sent armor-bearers to place a stone beneath Moses for him to sit on and then they stood with him and held his arms up. You are holding Al’s arms up during this fight!
    Being an armor-bearer is hard. You are supporting someone who cannot do it for themselves any longer. If you stop to rest, that person is unable to continue. Will you get tired? Yes. Will you give up and lay down yourself? No! You will listen to the still small voice that has led you this far, the still small voice of the One who holds up your arms as you hold up Al’s. *hugs*

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    • it brings me great comfort having you all here. I feel like we are in a circle holding hands building hope and strength. I need all of you. I know I shouldn’t. God should be enough, but there are times I need the reality of people here on earth. Thanks Mona

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  9. Terry, I am so sorry. I know you are in hell with this at the moment. We are with you. Take strength from the people who read your blog.

    I can’t click like this time, I hope you understand

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    • If I was at your house we would stand out on your balcony and watch the seagulls and the flowers and bugs. Peace would wrap her arms around me. Conversation with you would bring smiles and life would be good

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      • The sounds of the sea can be therapeutic, and oddly, the sounds of the traffic can be calming as well. Peace is always in view from either balcony.

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      • I have always been envious of your living area. I love the ocean, the standing near it. Smells of life, people passing by, boats, birds, all of it. I always wanted a cabin with a porch over the water so I could sleep to the rushing of the water near the dry land edges

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  10. Beautiful comment/ Bible story by AR, she is right you know you have more strength than you know, as weary as you are and emotionally wrung out you will get through this with the Lord giving you strength and we as your friends and prayer warriors are supporting you through our belief and prayers for both of you. The good Lord sees you and will give you what you need as you need it. Love and hugs dear ones.(((xx)))

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      • When Al goes home you will feel a sense of abandonment, anger, grief and all it’s stages and you will be tired so tired then you will take to your bed and rest that is when your true strength will get you back up and living again not as before but you will be amazed at how you can go on . That is what my prayers are for, for you to be able to get up and continue on.

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  12. Does your hospice or local hospital have a support group for caregivers? It might do you good to attend. You’re such a great sister to go through Al’s illness with him. Where would he be without you! Dear God, please bless Al and Terry with comfort, peace and strength. Please sooth Al’s symptoms. Amen.

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    • this town is not blessed with much of any support groups unless you are a drunk. No one here even knows more than a little about M.S.A. I wish there was. Thank you for the almighty powerful prayer my friend

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  13. You will find the strength as you need it. God will hold and protect you. The weariness will numb the memories and pain of this dreadful stage of Al’s journey. Talk to him as much as you can. Take photos of the two of you and sleep when he does. Much love dear Terry to the both of you.

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  17. Oh, Terry, this brings back so much memories of my mom and granddad, who both suffered from cancer and no pills worked anymore. It’s terrible sad and feeling so helpless, as you can’t do anything 😦 Finally the docters gave more medication in higher dose. I’ll pray to heal the pain you both feel. Big Hugs my friend! Take care.

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    • Yes, that is a perfect prayer. I may add that I wish that God doesn’t let Al suffer too much. I know God will only allow us to suffer no more than we can handle, but what about Al’s emotional side too? He is suffering, for sure

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  18. Aw, Terry. Excuse my absence as I’ve been so sick and no one knows what to do with me and my rare disease in the city, but you and Al are always in my thoughts. Always. Reading your post while Bob Dylan played in the background brought many feelings–as I have a connection to his music that brings back bittersweet memories of my father. I know how hard this is. Just hold on tight: to Al, to the counter, to whatever in reach so you keep standing, because we all are capable of falling to our knees. And you may, like I do, but you just have to get back up again. It’s too much for anyone to deal with, but I do think you are one of the strongest women I’ve ever met, and I’m pretty darn strong too. There’s a reason why Al is your brother and you are his big sis. I dare not think of how he would be without you.
    Love and hugs,
    A

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    • your comment touches me so much my friend. You know what Al is going through and you can relate to how I feel too. Life doesn’t seem fair sometimes to me. I look at Al as a mentally challenged adult/kid, and I wonder why God allows this to go on and on. I wish for you to feel better and send strong prayers your way.

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    • so far Mimi today is definitely better than yesterday. He ate his breakfast and is actually sitting in his recliner. Life is good and I thank God for these hours. Hugs to you my friend

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  23. Terry, don’t worry so much … remember the sand. If Al grabs his moms hand .. may it be so.
    I know my mom had the same thoughts in the end .. she didn’t want to fight anymore .. she was tired – and I had no right to trying to stop her. But that with the pain patch would stress me out – would it give him more quality of life – will it add a couple of more years to his life.
    You know my thoughts are with you .. wish I could support you in some other way. Ask questions about what it will do for Al if they mess about with his head.

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    • I know what you mean, but Hospice tries to control the pain while he is here. It will not add to his life at all. I don’t want him to suffer either while he is living but I hate what meds can do to a person too

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      • Terry, I think pain killers in Al’s stage of the illness is necessary – but to mess about with his brain path and brain liquid, does it mean they will go into his head .. and if it will not increase his quality of life ????
        Medicines can do wired things to us .. and especially pain killers, but they do a great job, but they mess with our head and body.

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      • I am so messed up about meds. They can do some evil things when you are trying to fix this or that problem. Personally medications scare the hell out of me

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