Please forgive me for repeating the topic of moaning, but it doesn’t stop. I heard Al in the wee hours of the morning and gave him some more medications. I am getting to the point that I don’t see any improvement at all with the medications, except to keep the two-week ongoing temperature down.
At the time allowed I medicated Al once again. The caregiver had been using Google to search for something more specific for Al’s chronic moans. She did locate one that could possibly work but Hospice said they had never heard of it.
Actually it is a very old medicine but isn’t used much anymore with the newer medicines popping up all over. I was reading about it this morning and it should only be used for a very short time, so maybe it isn’t meant to be.
The caregiver and I do spend time trying to help find a medicine that could benefit Al, but maybe there isn’t anything out there on the market. Is it possible that he will continue this moaning and mumbling until the good Lord takes him home? I don’t know.
He is as of last evening choking and struggling to get his mouth open to take any medicine. I am not sure at times if he is even hearing me and maybe this is why his mouth doesn’t open properly.
The choking on the smallest amount of water bothers me. What happens when I give him the medicines and he can’t take the water? I can see this issue becoming a reality very soon. It breaks my heart that as I write this post, he is in his bed coughing from having his meds. Is he talking to God again? Is he in pain? I don’t know anymore. All I know, is he needs relief and I am not the one who seems to be able to give it to him. Please Lord, please help Al in any way you can.
Who I am 
I do not know how you are coping Terry – please know how much love I am constantly sending you!
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I feel like I am not coping well anymore
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Terry – you are amazing! You have done way beyond any normal human would do. I did a tiny bit of what you are doing before Anthony’s transition to the nursing home and I know you have come to and fro from this, and, despite how much the various systems work, and fail you, you keep on keeping on. PLease give yourself a break now! Bundles of love!
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It seems to get harder and harder. I think while Al is gone next week I will do what ever I feel like, mainly sleep
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You’ve likely mentioned before but i can’t recall… are the meds he gets basically for pain and to allow sleep? It’s got to be very difficult to be listening to someone you love be in so much discomfort… emotionally or physically. Next week when you get a few days respite will be good for you to have. Often times we concentrate so much on the patient and not the caregiver.. although I know those in the blogging world at least you do get support and from a few friends.And in the meantime I pray you get as much rest as you can… Diane
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Yes, the meds are mainly for pain and calming. I hope next week I do get some rest. Thanks so much for caring Diane. hugs
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Good morning Terry. My heart just breaks for you and Al. My husband became an MSA angel 2 years ago at the age of 64 after a 7 year battle. I was his full time caregiver with hospice assisting the last 5 months. We stopped all of Randy’s meds when he could no longer swallow safely or open his mouth well, the last month. I gave him small amounts of liquid morphine when he was restless to keep him comfortable. I do find comfort, today, that I did everything I could until I had to let him go. I feel like I am there with you Terry. I am praying for peace and comfort.
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Forgot to sign in to my post , Terry
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Al is now to the place where he is having trouble swallowing pills. I am not quite sure whether he realizes I am trying to give him his medications or not with all his moaning. Thanks for sharing with me Pat. I appreciate your trusting me with your story. I am sure you miss him but am happy that he is no longer in pain
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I have never had to deal what YOU are dealing with!…I can only say…you are a strong woman…and when this is over…you will prevail…with a good life!…Blessings Terry…May God heed your prayers and ours…
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Thanks so much Marilyn. I hope and pray you are never put into the situation I am. i will come help you if this happens
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that’s the nicest thing to say…because I know you mean it!
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Yes I do mean it
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Terry,
I have been reading your blog for some time now. My mother died over 10 years ago from MSA at 53. It was over a 10 year battle with the disease. We were lucky/unlucky to have had her pass away unexpectedly one night. I am a dietitian and it is ok and normal at end of life for Al not to eat or drink much. The body is shutting down along with all his organs. Difficulty swallowing is also normal and part of the process. I work with seniors and have some on hospice. If unable to swallow dissolvable meds are available or injections. It is routine for ativan(for anxiety), morphine(pain) and atropine(decrease excessive saliva) to be ordered as comfort medications at end of life. I hope this information helps you. Prayers to you and Al.
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Hi Rachael. I am sorry for the loss of your mother. Al can’t take Ativan. We do use the atropine, but it is very hard to keep ahead of it any longer. We now went to the xanex cream to try to help him with swallowing. The other medicine that is used is dilladid and tylenol pain and fever. We can use morphine but no more than .05, or he goes crazy and starts cussing and kicking, so we have backed off of that one. You have been a big help, thank you
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Terry,
Have they tried a fentanyl patch for pain?
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Yes, they went as far as they could go but his pain is bigger than the patches
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May the Lord be with you in a special way today. May He comfort, strengthen and give you wisdom to meet the challenges you are facing. May He intervene in Al’s life and work peace.
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I love this prayer. I know God will do something here soon to help Al heal. Bless you and thank you
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Terry, there is nothing that we can say that will make sense of this long and difficult journey for you and Al. Just know that we are all sending positive energy, love and compassion your way.
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Thank you so much Joy
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Sending you warm and loving thoughts.
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Thanks so much Tiny
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{Hugs}
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Thanks RoSy
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I really don’t want Al to suffer either and pray more and more. Hugs
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Thanks Ute. I don’t want him to suffer anymore either
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Terry,
My Marguerite my friend my wife passed from this horrible MSA last November 19th. I read your posts and know just what you are going thru. We prayed and prayed, the miracle is in His grace. I hope that you can feel our prayers. We are praying for you now. Tonight Marguerite’s team is coming for dinner and we are all wearing purple. As we gather we will hold up the both of you.
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I am so sorry for your loss of your beloved. I will be thinking of all of you as you dine together with the common bonds of love and a cure. Bless you for your kindness and prayers for Al and me
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sad
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Yes it is
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