I Wanted to Say, Don’t Even go There


Al was admitted to the local hospital this morning. I was told that since most medications they use have the reverse reaction for Al, they wanted to admit him so he had a bigger team to work with on getting the right combination of medications.

I just called up there to check on him. The nurse says he is very anxious. She was getting ready to go in and give him something. The hospice nurse is trying to talk me into having Al admitted to a nursing home after his stay at the hospital. I refused. I told her I had done that before and it was not a success because of the large lack of understanding and recognizing MSA.

She then tried to tell me it must be too much for me since I was saying I was too tired. That maybe a nursing home would benefit him. I got very offended. Of course I am tired. For two days he has not slept, so neither have I.

Getting the right combination of medications makes it easier for him to relax enough to sleep and then I get some sleep. Would I like to have more sleep? Yes, who wouldn’t? But I can go on fewer hours per day but I can’t go on two days with none.

I have an excellent helper who happened to have today off. I had asked Hospice for a volunteer to come sit with Al so I could sleep. I was told that volunteers can not change him or give him medicine, so I passed on that suggestion. I would have to stay a wake.

To me this all boils down to Al is contracting causing more pain. When the pain is out of control he is going to be more restless and less sleep. But I look at it as a temporary thing that can be fixed.

So no, I am not placing him. I am a good sister and a good caregiver. With my helper I will keep him at home until he passes. The nurse told me Sunday she thought he was passing. She thought he was having restless syndrome which is right before the death.

The nurse today told me she sees no signs of Al passing. That he was just upset because he was hungry. She said he may have a few months to go. I wish they would stop. Just stop guessing. My  mind has no other route but to follow what the nurses say. To hear that he was passing automatically set my mind to thinking, oh my gosh, our time is so limited.

Then you hear he may have a few months. Oh good, he will be here for Christmas.

I want my brother with me for as long as possible. But if he is constantly going to be in  pain, then of course I would rather have God take him home. Al was holding his arms up to the ceiling last night trying to grab someone’s arms in heaven. There is a big part of Al that wants to die, but I think this stems from the huge discomfort he is in. The other part of him is scared to die. But the other part of him is begging anyone who will listen to give him a shot so he can die.

The whole thing is very upsetting to watch him go through. But one thing I know for sure is I am a good caregiver to him, and I won’t change my mind about it.caregiver

46 thoughts on “I Wanted to Say, Don’t Even go There

  1. Boy they just don’t let up on you do they. one saying one thing another something else. Talk to the attending physician at the hospital and see what he says about time, although as you stated, it is in Gods hands. I hope you get him back home as soon as you can that is where you will feelmore comfortable and Al as well. Big hugs

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    • Yes, I agree, they mean well, but what am I supposed to believe? that is hard on me, do I prepare or what, so silly when God is the only one with the answers, and yet I am hearing what they say

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  2. Sweetie you are the best caregiver for Al because you love him and he is not just another patient to you.
    I have had wonderful medical care of hubby when he has been admitted to the hospital.
    The nurses have been wonderful but they did not know him like his caregivers and I do.
    His inhome nurse always knows what he needs when she is called because she does know him.
    I think what I am trying to say is go with your feelings.
    Sending prayers for you and Al and hugs your way.

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  3. Always follow your heart, nothing less or more darling friend ~you will
    feel peace only then, and trust yourself Terry, you’re a spiritually sensitive heart so, please trust yourself and God. I’m praying all the time. xxoo

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  4. Do what your heart desires and continue t be the fantastic caregiver sister you have always been. Al will thank you fo rit as he knows how much you love him. Hard but the best way Terry!

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  5. No one knows the time a person has…and with an illness like Al…there has to be lots of ups/downs…good days/bad days…The difference with you and the medical staff…IS…that your heart is breaking…He is your brother…THEY cannot feel that!…Probably ALL are doing all that they can …and I hope for Al’s sake…The best decisions are made…
    Love to you Terrry…and get that sleep that your body needs…while Al is in their care! …YOU have the final say as to your brother’s place to be in his last days…whether that be a few days…or months…

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  6. Terry…..you go with your heart. The truth seems to be that they don’t know either when his time to go to the Lord is. I know you will go the last mile with Al….no matter how tired you are. Praying for you both…

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  7. Between you and the Lord Al is in good hands. May He conitnue to bless you both with peace, comfort, patience and faith. A bit later this week I’ll be auto posting on the blog and taking some time off for the holidays. But you both will continue to be in my prayers. Lord bless you my friend.

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  8. I wanted to let you know I still follow most of your posts and am updated on you and Al although I haven’t been online or on WordPress as much. Sometimes it is easier not to believe in what others are telling you. Some may think you are ignoring hope, however I think it is what is between you and your instinct or God’s calling that is the truer of any future prediction. With lack of sleep it has to be taking it’s toll on you. I hope you are able to shut down for several hours at least today. Use your helpers day off as a partial day off for yourself. You need to do that; like the analogy about placing the oxygen mask on yourself first before trying to save the person beside you. {{hugs Terry}} you and Al are in my thoughts.

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    • Thank you so much. I did sleep quite a bit yesterday and last night. I had some silly, crazy dreams, but to day I feel better. I am still tired and going to catch up on more naps. Big hugs

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  9. This time last year I was in a very similar situation to you. The beauty of volunteers is that they will sit and chat to Al whilst you are resting. It may be good for him to have non-medical interaction. Just a thought. Also bear in mind dear Terry that as his organs are slowly starting to shut down, his absorption of the medication will decrease. I wish you rest my friend.

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