Friday, March 13, 2009

sleeeplessness

Brian's decline seems to continue.

Last evening and night he had several issues with vomiting. He is drinking less and not outputting very much. Not to be too graphic, but he only pees about twice a day and hasn't had a BM since Sunday. Also, since Sunday he has only taken in about 8-20 ounces of fluid per day and about the equivalent of one package of Ramen noodles or half a sandwich in any given day. I offer every and anything to him as does anyone. He is just not interested in food or drink. For Brian not to drink shows serious signs of a change. He normally drinks about 64 ounces of fluid a day.

Brian is becoming weaker and less stable. He can not walk even a few steps anymore. He needs help getting in and out of bed and his chair. We take the wheelchair to and from the hospital bed to the La-Z-Boy now. When he does eat, it is in bed or in his chair. He no longer attempts to make it to the table.

Last night he became incredibly confused talking about the "help desk" at one point in time. Also, he and Sean and Murph - his brothers - were doing something related to cash. At one point in time he was doing a project for which he needed scissors. When I told him I was not getting him scissors, he got irritated with me and told me to stop talking to him like he was stupid. I felt bad and suggested he work on it later instead.

Brian seems to be fighting sleep like he did this night in February. I have given him a few different drugs to attempt to assist him with this. It seems like EVENTUALLY, when he finally stops fighting it, they work. He was up most of the night last night very restless. Trying to get out of bed a couple times, asking for his IPOD, trying to control his IPOD with the TV remote control, turning the TV off and on, looking around for the source of what he thought was a strange noise, etc.

He finally fell asleep around 10:30 this morning.

Brian's parents have spent the night every day this week. Brian's Aunts and Uncles are coming to the rescue this weekend while his parents attend a funeral. I have decided to send the boys to St. Louis to play with some cousins and aunts and uncles in lieu of staying around here. This is a tough decision as I do not know what phase Brian is entering and how much longer he has. Still, I think, with it being Grant's birthday and a couple days off school, they can have a nice time being spoiled and distracted in St. Louis. I pray it is the right decision.

Everything in me tells me this time is it. I know there is no way of knowing for sure. I spoke with his hospice nurse this morning to inform her of Brian's current condition. She suggested increasing some doses of Lorazapan which can help with vomiting and restlessness. The suppositories will also be effective in managing this. She stated, however, that we need to be prepared that Brian's confusion with his bodily function needs, his instability, his restlessness, his weakness and his lack of appetite are all signs of his entering a final stage of life. Not that we haven't experienced this before, but this week we have seen a continual decline in Brian unlike the other times.

Please remember that Brian loves to hear from you - even if you have written in the past - especially fond memories:

brianoneill1972@yahoo.com

I don't know how to creatively end this post.

Please pray for us. I just want the peace and love of Jesus to surround us -ALL of us - including every one of YOU - in this time.

KEEP BELIEVING

31 comments:

  1. praying for your comfort and your peace, Paul & Cheryl

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  2. Continually praying for you. I never really understood the concept of a "happy death" that is in so many Catholic prayers until this year. You have helped me to understand and to accept so very much. Your struggle and Brian's (as well as the boy's) have been an inspiration to so many. I pray that the boys enjoy their trip and some wonderful spoiling, and that nothing ever hampers the memories. God Bless you Angie!

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  3. The love and peace of Jesus is surrounding you. I will pray that you continue to feel it as this journey continues. We are surrounding you in spirit, Angie.

    Still believing.

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  4. My heart aches for you and your family, Angie. I have nothing to say except that my prayers are with you.

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  5. it sounds like the end is near. Has the nurse suggested a saline IV to keep his hyrdation level OK?
    Thinking of you, make sure you rest and let others do the little things so you can be with Brian as he lets go slowly.

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  6. Saying a prayer of peace for you and your family.
    -d

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  7. Still here, reading, thinking about you guys and praying. My birthday is today and I am so grateful to God that I am healthy and can continue to enjoy my children. Reading your story has made being thankful and grateful a daily part of my life now--thank you for that.

    I pray Brian accepts in his soul what is happening and that he is able to realize how precious every minute is now. I hope your boys have a terrific time away and I'll be thinking about you there focusing on your husband, trying to help him and doing the best for him in such stressful circumstances.

    Kris

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  8. Praying, darling Angie. Much love-Shawn from TN

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  9. Oh Angie, you are always in my prayer. I hope the boys enjoy themelves. Sounds like they will. HUGS.

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  10. I will continue to pray for peace and comfort for you all.

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  11. Praying for you and the family. May you feel God's love surround you in these days.

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  12. Hi Angie, my name is Jennifer. I stumbled across your blog one day & have been reading ever since. I think of your family often. I can't say that I know what you & your family are going through because I've never had anyone THAT close to me die such as a parent, sibling or spouse. I have however just recently lost 3 people extremely close to me. A friend who died suddenly in December from a brain aneurysm. She was 31 w/ 3 kids & a husband. My best friends mom, who was like a 2nd mom to me commited suicide Feb. 13th. A coworker/friend who died Feb. 24th after a 3 yr battle with ovarian/lung/bone cancer. I have relied alot on my close friends & family to get me through the aftermath of these 3 tragic events in my life. My advice to you is to accept any & all offers of support from whomever offers it. It sounds like you have a strong support system. Thinking of you often, Jennifer in Illinois.

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  13. My heart is so sad. I have no profound words to give to you. You are all in our prayers and we will be here for you whatever you need!
    Thinking of you.
    Gretchen & Keith

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  14. I can't imagine how time is standing still but yet moving way too fast for you right now. Our thoughts and prayers are still with you and your family.
    The Harpers from Ironton MO

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  15. Angie..Remember hospice is there to help...They can give meds to help with sleep at night. The mid-night hours are the worst. Weeping may endure through the night BUT joy cometh in the morning:)God be with you all..praying and sending love from Michigan.

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  16. Praying for you and your family. I hope that your boys are able to have some fun this week.

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  17. Angie -
    Praying for your family every day. Lately there have been so many examples I have seen of people who are praising God - not because of the blessings He bestows or because of the things He does, but simply because He is God and is Worthy. You are living that example and I will continue to pray for your family's peace! I'm sure they boys will enjoy their weekend being spoiled!
    Marcie

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  18. Angie, I'm so sorry. We are praying.

    Janell H.

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  19. Just leaving you a comment that I said a prayer or you and Brian and the boys again a few minutes ago. I know that GOD will continue to give you peace and strength. And you know that HE loves you and your family!

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  20. I am saying a prayer right now for the peace you seek and deserve.

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  21. Your final lines in this post just show what a truly remarkable woman you are. I'm still praying, and asking God to give you whatever you need most today .... strength, courage, acceptance, faith -- or a healthy mix of them all.

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  22. Angie and Family,
    We love you all and are praying for you. Do knot worry over your decision to send the Boys for some time away, they are okay and they know how much they are loved. You are in our thoughts and prayers.
    Love, The Holzers

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  23. I pray so hard for all of you !! We love you !!! We are excited about Grants B-day tomorrow. We want to stop over before they leave with your Mom!! Please have her stop over if she hits the road before we see the boys !! Let me know what you want to do on Sunday so we can "hang out "
    Take Care Love,
    Mike,Kathy,Jessica & Nicole!!!!!

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  24. Much Love to both you and Brian and the boys from The McDonalds in Spruce Grove Alberta Canada
    Wishing you much needed peace with evrything that is going on for you and your families
    Carol

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  25. Much love & many prayers...

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  26. Ang,
    Don't fret over your decision. It's a great to idea to send them to your parents for a while. They need a break from the stress too! And Grant deserves a great bday. And if Brian would go home today, you certainly don't want that to change the way Grant feels about his bday. It's so hard. I understand your nervousness.

    I'll be rehearsing at church all day, so I'd like to come by during a break. Also, Harold is a great "pray-er..." I'll put him on the case. We will offer up this weekend's music to you guys.

    I love you! Kara

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  27. hey you! I think it was good to get the boys some good playing time with cousins in MO.
    No other words to say. I am glad you have your family there.

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  28. Brian, Angie and boys
    You are in my thoughts and prayers-may God bring you comfort and peace during this time.

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  29. angie,

    that you can end this post with a prayer for others, people other than you and brian and your children, is humbling. and inspiring.

    i am praying for peace for brian and those who so love him.

    kate

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  30. Thinking of you all, praying for you all and sending lots of love and hugs your way.
    John and Nancy Piccatto and family

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