Do As You’re Told Missy


For a couple of weeks now I have been introduced to the reality of dying and how food and water affect the process. I preferred to ignore this new idea given to me. After all I was not going to do anything that may make my brother feel I was nothing less than a good sister.

We all know that I have done everything in my power to grant Al all of his dreams and wishes before he leaves this earth. I have probably been the worst at spoiling an adult. I have purchased everything he mentioned, only to see that smile one more time.

Now for the past few weeks Hospice, me and my caregiver can not figure out why Al is still lingering. Oh, please don’t get me wrong. I would have Al stay here if I thought there was a chance in hell he could be cured. But, on the other side God would be the one to provide this amazing miracle and I believe in my heart God  has a more important job for him to do in heaven than laying in his air bed.

In these past few weeks we have fought this big bully called MSA. It has shown its ugly fangs. It has done its best to escape any opening it can. It has filled every gap possible inside his body.

For the past eight days Al has kept a temperature. I was able to keep it at a normal temp by using medications, but no longer. We have went from forks and spoons, straws to now syringes for feeding.

Since he is still staying behind, now he is aspirating into his lungs. Every syringe of food and water goes directly to the lungs. There is no pass jail and no collecting of two hundred dollars.

On this past Friday, Hospice stated that Al’s pulse is very weak. Saturday evening Al was breathing very shallow. This is the only was I knew for sure he was still with me as I could find no heart beat and no pulse.

Today the nurse did her thing and then told me to come out to the living room. Uh oh, there’s that tone. I am in trouble. We sat down and she placed her hands in her lap. She took a deep sigh and she closed her eyes for a moment. I know others may not think anything about this part, but I know her well enough to know she was praying for the right words to get through my thick skull.

She started the conversation off with the fact Al is gasping from air and taking huge breaths of air. She said this illness has told the brain to not acknowledge that Al needs to breathe. Then it kicks in reminding him to breathe, thus the big gasping effects.

She said that his pulse and heart beat are weak. Then she stopped and I think she prayed one more silent prayer. She then looked at me and said, ” You need to do as we tell you Missy, so Al can go home.”

I thought, ” What did I do wrong? I try my best to be there for Al.” She continued on with,” Al is ready to go home, but with your constant feeding him and giving him so much liquid, the body is desperately trying to revive its use over and over, but it fails. This in return causes Al more discomfort and misery.”

Of course the little girl inside of me began to drop a few tears. How could I not feed my brother? How could I starve him?

She then went on to say, ” Al’s body is so sick. It doesn’t need as much  food and liquid like it used to. You need to go in at meal times and ask him if he is hungry. If he says no, leave it alone. Don’t try to force him to eat. If  he says yes, offer him a few bites of whatever he wishes for. It will be enough to satisfy him. Or give him the sherbet. It will make his dry mouth feel better. As for the water, give him a half of syringe. Terry, you don’t want him to aspirate to death. This would be a very painful way to die.”

The last sentence she said must have hit me hard. I already had thought for months that Al was struggling to fight this nasty disease. But for me to add to the problem, for me to be any part of him not seeing heaven, was too much for me to bear.

I decided right there and then I would follow her suggestions. For lunch today, he did refuse but he took a half a syringe of water. For supper his answer was yes, he wanted soup. I had made home-made chicken and noodle soup today. I pureed some of it and gave him three syringe full of it and one syringe full of water.

He did not complain nor say a word. He seemed content. I breathed a little sigh of relief as I walked out of his room. He was alright. He wasn’t starving. He is sick and he is ready to go to heaven. He had a bite of food and he was satisfied. I no longer feel the very heavy guilt I had carried previously. I am now able to look at it as helping Al to reach his goal.

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35 thoughts on “Do As You’re Told Missy

  1. Oh,Terry. What a kind, caring, compassionate nurse. What a hard thing to have to say to you. And kudos to you for accepting it, and choosing to let go of your strong need to nurture him to life. Nothing easy about any of this, is there?

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  2. What a hard thing for her to tell you…but, her words must have been chosen correctly…for you to see what she was telling you…What endurance you and Al have had…It seems the time has come for Al to peacefully leave this Earth…but, remain in your and our hearts forever…Because he will Terry…He has made a great impression on so many…Your story was meant for many…and now a new chapter will open for YOU…Love to you during this time!

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    • Thanks Marilyn. This last chapter will be the hardest for me I think. Doing what I have to do in order for him to leave in as little pain as possible is almost too big of task, but I have to lean on you and God, and I will get through it

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  3. Yes this is difficult but you will be doing the work of God in allowing Al’s body to finally find peace. I will continue my prayers for you both…what a blessing you have been through this all.

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  4. My prayers are with you. I know what you have gone through. We were with Jim’s dad his last four days on this earth. He was with Hospice. He had signed a DNR and did not want to be given fluids. It was hard seeing him laying there not getting a drink only a moist sponge placed on his mouth and lips from time to time.

    Know that AL is now made perfect. He will be in your heart always. In the days ahead you will begin to establish a new normal. My prayer for you is that you experience a peace that passes all understanding.

    May you feel the love of our loving savior holding you at this moment and in the days ahead.

    Blessings and Hugs,
    April

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    • I hope with all my heart that God helps me stand strong as he releases God from my arms to his. This is so very hard for me to do and watch. Hugs my friend

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  5. Praying for you and Al. Terry – please know you are teaching us with every thought, line and insight you post. Your commitment to your brother is awe inspiring to me. For all of us dealing with MSA, the stories about the end of life and what to expect are so few and far between. Your blog is a precious archive of these last days, weeks and months. I only wish I could have found you and your words sooner. You are on our hearts and again, in our prayers! Marilee

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  6. You have come a long way and I am grateful for this nurse and her honesty with you.
    I am grateful for the peace you have found with Al’s getting ready to go home soon.
    I pray for ease of passage and what a celebration when he is home and free.
    Hugs.

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  7. Terry as I said before my dad refused to eat and drink as he wanted to die and it is a humane way and painless way as he didn’t feel hunger or thirst anymore. It took about 10 horrible days to the end, but he made the decison and nobody forced him otherwise, all the nurses did was made him comfortable and we told him how much we loved him. The body still takes nutrients from what is in there until there is nothing left. It is very harsh but I think you rather want him to be painfree. Terry big hugs ! I am just crying with you now!

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  8. Dear Terry I have been away for quite a long time on hiatus that is why I wan’t aware of this before. My love and prayers are with you and your brother. God is great. Your care for him goes beyond so many levels. You are a great human being. Stay strong.

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  9. Dear Terry, I can imagine how hard is all this for you. It reminds me my dad’s lasts moments which were extremely peaceful. Be strong. You are strong. You are a loving wonderful sister. You are doing what’s right. God will help you and Al. My prayers are with both of you.

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  10. i am so glad she sat you down and talked with you. everything she said is true and i had no idea you were feeding him without his request for food. my mother and grandmother passed from the same disease i have, they both stopped wanting food a week or so before passing. if they asked of course they were fed and as you have discovered a single bite may be all al wants.

    you are in my thoughts and i send big hugs and love to you

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  11. Oh Terry, I would be just like you thinking what you were doing was the right thing. How blessed you are to have a sweet knowledgeable nurse to tell you and how wonderful your heart to be open and willing to follow the direction. Al will now be able to use the nutrients he has stored with the exception of water that is all he will need. You are such a strong loving person we can all only hope that we have someone just as loving and strong with us in the end.
    You must be strong now and listen to Al for his needs and soon he will go home and be at peace with no pain from this nasty disease and you missy will know you did more than enough to make him comfortable and you loved him more than anyone. For all that I applaud you my friend…know we are all here for you just reach out and we will hold you through this. Love and {{{Hugs}}}

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  12. Terry, I know how hard it is to feel like you are ‘withholding” what Al needs, but the nurse was right, he just needs your love now to help him on his way. He may even just be taking the fluids and soup to please you. I am assured by many Hospice nurses that in the final stages of life, no sustenance or nutrition is quite painless and allows the body to shut down gradually. The food and fluids merely serve to sustain processes that are trying to stop themselves as nature intended. It is very painful to see (I can attest to that), but not painful to experience, I am assured.
    In my professional life as a nurse, I have been privileged to witness and share the end of many lives. Share these last few times with Al. You have given of yourself so generously. Al knows that.

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    • It is nice to read from another professional nurse that I am doing the right thing for him. I don’t want me to be the reason he remains here suffering. He didn’t eat supper tonight and very little breakfast and lunch. He does crave ice cold water. Thank you so much. I really appreciate your comment

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