Tuesday, February 17, 2009

the ride continues

The last few days have been incredibly up and down. We have reached summit of the coaster hills and plummeted to the bottom, then back up again. I feel like right now we are at the boring part of the roller coaster where you think must either end shortly or you are soon to be surprised with a hidden leg of excitement - maybe a loop or hill or a plunge. Who knows?


Plummeting:
Brian remembers NOTHING of what happened on Saturday night at Alexander's Steak House. He remembers nothing up to Monday morning and even that is sketchy. He is extremely frustrated with me and anyone else who thinks that he should take precautions or stay put. This is largely because at the most difficult moments of Brian's condition so far, he remembers NONE of them. He does not remember how bad he was in November just before he had surgery to install his shunt. He does not remember mid-January when he was unable to walk and forgetting everything before we discovered the tumor had progressed. And today, he does not remember what happened Saturday night and Sunday- how he was up all night and all the nonsense things he said like how he was going to request a change in management when I refused him a drink or how he was petting me on the head like a dog and he said at least he didn't call me a bitch when I asked if he was stroking my hair or petting me.

It is gone from his memory as are a lot of other short term things. He can't remember hour to hour if he took his medication. He can't remember moment to moment where I am heading or where the boys are if they aren't in the room. He looks for me all the time and constantly asks where I am. He didn't remember that Mom was here this morning when he woke. He doesn't remember whether or not he ate. And many other examples. He remembers long term things pretty well, though.

Summit:
He is able to move and walk a bit better. He is conversational and involved. His vitals are good. We slept in our bed last night and the hospital bed remains empty except for the kids when they play in it. He showered on his own last night as I stood by and watched. He is ascending and descending the stairs. He does not use the wheelchair, either.

Plummeting:
With his stability issues and the understanding that things can turn so quickly, I am insistent that he not walk around unless someone is close by him and that he not descend stairs unless a strong man is in front of him. He is not accepting this very well. He is not treating me very kindly saying some pretty harsh things, taking an incredibly sarcastic and defensive yet accusing tone. I know it is not the Brian I know speaking, but it is difficult nonetheless.

Summit:
Brian is very aware of his need for his medication. This has been such a part of his regular routine for 12 years that he cannot think without being engrossed with taking his medication.

Plummeting:
Brian does not remember if he took his meds. He thinks he took them, then he thinks he needs to take them - moment to moment. I hid all his bottles of medication and assured him I would be responsible for getting his right meds at the right time. He is not nice about it. I am developing some thick skin because I know this is what is safe for Brian.

Summit:
The boys went to school yesterday to Daddy sleeping in a hospital bed in the living room. When they arrived home, he was able to walk and lounge in the La-z-boy watching TV.

Plummeting:
I opened Gavin's backpack to find a card for Daddy that he had made at school because he had wanted to come home and see his Dad afraid he may die while Gavin was at school. His wonderful teacher had encouraged him to express his feelings on a card and share them with Daddy when we got home. The card had Dad written on it no less than 15 times. It made me proud and broke my heart at the same time. I had a conversation with Gavin that if I thought Daddy was getting close to dying while Gavin was at school, I would come get him. I cannot even believe my 7 year old has such a heavy burden on himself as he is learning that "igh" makes a long "I" sound.

Summit:
Yesterday, Grant had two great-aunts and his Memaw here to distract him and spoil him. He got some Spotted Cow Ice cream - one of our favorites and Taco Bell - his first time, but he loved it.

Plummeting:
Yesterday, I felt like crap. I had nausea and ahem, other, issues that plagued me for about 24 hours.

Summit:
I had plenty of relatives here to help yesterday.

Plummeting:
Today, my mom (Memaw) feels like crap.

Summit:
Today, I feel great.

Both:
If I think this is confusing for me, imagine how it is for the boys. Gavin came home to find Brian out of his hospital bed and walking around and asked me, "he is still going die, though, right?" Grant looked over at Brian watching TV and said, "it looks like Daddy is dead in that chair with his mouth open and not moving." These are some of the normal statements spoken in our house. It is like we all have to convince ourselves that this is real because we realize moment to moment things can change so drastically. We have to keep ourselves guarded and prepared. They are watching AirBud on the big screen as I write this. Moments ago, Grant was telling me to cry in his shirt. I explained I didn't need to cry right now. He said that I should cry because of Daddy. I explained that sometimes I feel like crying and sometimes I don't. He can cry to me and in my shirt any time he wants. Sometimes he will feel like crying. Sometimes he won't. I don't understand my own emotions and my own valleys and hilltops. To get them to understand is a whole other issue.

My boys are confused about sickness. They think sickness is the reason you give if you don't feel like doing something. If Daddy misses a game, it is because he is too sick to come. If Daddy doesn't eat, it is because he is sick. If Daddy sleeps late, it is because he is sick. And those things are true because Daddy doesn't want to sleep late or miss their games or be unable to stomach food. Daddy misses those things only if he is too sick to do them. They think they have to say they are sick if they don't feel like going to a game or if they don't want to eat. They are both constantly saying they are sick. I try to make sickness be something they DON'T want to be by saying things like, "that's too bad because if you were feeling good we could play this game instead of (whatever), but now that you are sick, you will need your rest instead." Things like that. Still, sickness is confusing in this house. As are lots of things.

Some days, as terrible as this may sound, it would just be easier if Brian consistently felt awful.

But that's not how I want him.

KEEP BELIEVING

43 comments:

  1. I want to type something profound to you but there is nothing to say. You are an incredible writer who finds just the right words to describe an awful situation. My prayers are with your family. I hope you find peace and comfort!!

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  2. Yes, your roller coaster continues, and we will continue praying for you! For strength and knowledge how to deal with both Brian when he doesn't remember to consoleing your sons when they are having trouble understanding the why's of the illness.

    You Angie are an amazingly strong woman. You are bouncing with the flow and still keeping your sanity in doing so. I know it must be extreemly hard for you have that tough, tough love to not let him do some of the things you know could harm him.

    Words are hard for me to find to type to let you know that there are lots and lots of people praying for you and want to be there for you.

    :) Hugs to all of you as you deal with one minute at a time. WE LOVE YOU!

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  3. UTmomof5 said pretty much what I had intended to. I pray for your strength to get you and your boys through this. A close personal friend of mine had just gone through your situation. Not to get too much into your private/personal business but she said that her oncology psychologist was one of the best things that happened to her family (with 3 young daughters) during her husbands illness. If you haven't already, it may be good for the kids. Your strength is inspirational.

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  4. Angie,
    I am checking your blog all the time; praying for you constantly.
    Gretchen

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  5. I, too, check your blog all the time...hopeful for more summits than plummeting as I can only stand by and read about your rollercoaster ride. You are all heavy on my heart and I am still praying for you'.

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  6. I never seem to have any words to offer. I will continue to pray for you to have peace, summits, memorable moments, and wisdom to help your boys. You are so amazing Angie - I was so happy to see you this morning.
    Ashley

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  7. Angie,

    I pray that God will give you the strength and stamina needed to continue on this roller coaster ride that you find yourself on; that He will give you encouragement and understanding when Brian is hurtful to you; and that He will give you wisdom and support when it comes to your boys and trying to deal with their questions and fears.

    I can understand how your heart breaks for your boys. When my son was 11, his class had to write a paper about the worst day of their life. As others in his class wrote about a broken leg, a lost hampster, or some other minor mishap, it broke my heart to read my son's paper about the day his dad died. I remember thinking how unfair it was that THAT had to be his worst day and I just sat and cried. That is just one of many times my heart has broken for my children since they lost their dad and, in all honesty, you will feel this way many times also. Please be confident, though, as I am that our God WILL NOT forget our children and that He WILL bless them in their lives for the loss they have/will suffer. I trust in that with all of my heart and it is the only thing that gets me through some times. You seem to be doing a really good job of trying to explain things to your boys...you are an amazing mom and wife and a true inspiration to all of us!

    Praying that you truly Keep Believing . . .

    Kim from Nebraska

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  8. I too wish I had something great to say. Just know that you are in my prayers. And I too am hoping for more summits! :)

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  9. oh Angie.......I don't even know what to say. You are doing the right thing when he is agitated, it's just so hard on you. I'm praying for your entire family tonight. Please let us know if you need any assistance. Paul & Cheryl

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  10. I cannot begin to comprehend how difficult this must be. The harsh words from him must break your heart, but you do an excellent job of putting things into perspective (although I am sure the hurt is still there). I don't know you, but like the others before me, I check your blog constantly. I pray for you and I hope to God I get to keep checking for Brian updates for a long time to come.

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  11. I read your blog, and sometime I have to stop and remind myself that you are a real person. This isn't fiction. And, how all I want to say is "I'm so sorry" but think of how tired you must be of hearing that.

    So-keep believing is the best thing I can think of.

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  12. Dearest Angie,
    Sending you many hugs.
    Love you Marjo

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  13. I think I have only commented once or twice but I wanted you to know that I pray for your family every single day and read all your post. You are such a stong person even if you don't feel like you are sometimes. I don't know how you do it. You have really opened my eyes to life and the blessings I have and for that, I thank you. You truly give everyone hope that reads your blog I am sure. Just know, you and your family will always be in my prayers.

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  14. Sending love to you Angie. I hate to think of your being jerked up and down and spun around on this roller coaster. God bless you.

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  15. It sounds like you are doing the right thing every day and every moment for you, for Brian, and for the boys. Somehow, it seems. you know what to do and say. That is God, I guess, holding you up and making sure you can handle what comes your way.

    With prayers,
    Roban

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  16. Angie - I am in complete awe of your strength. Please know I am always praying for you.

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  17. I am hoping and praying for more summits than plummets.

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  18. Easy for me to say, but
    Be strong when you need to, and
    Lean on everyone else every chance you get!

    And God bless your mama!
    Kara

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  19. I too am reading it to see how you all are doing and how I can pray for you. You are right, it is not your husband talking, it is the cancer. Still hurts a little though, I know. Continuing to pray for you all

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  20. Thank you for sharing with us. Thank you for your honesty. I will continue to pray for you and your precious family. May God give you the strength you need to make it through the summits & the plummets.

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  21. I too am praying. Just praying. Thank you for sharing all of this with us. I hope that this blog is serving it's purpose, as an outlet. HUGS!

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  22. Angie... Keep up your strength. Don't forget time for yourself to recharge (even if its just a long soak in the tub). The peaks and valleys will come closer together, as things progress. You are doing an amazing job taking care of your family and guiding your boys through such a tough chapter of thier lives.

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  23. I'm wondering - would it be possible for you to ask someone to do the "dirty work" - telling the new rules to Brian, taking charge of his meds - so he doesn't blame you? Have a nurse or someone say these things to him and let them take the brunt of the harshness? You shouldn't have to do all that right now.

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  24. wow this is an incredible post. Angie you are doing a wonderful job. Really. I think maybe the boys are struggling with their "hearts being sick," they have sorrow overshadowing them and loss, and yeah they are kids, and I bet they really do feel sick. Everybody needs to be very gentle with each other and forbearing. The story with Brian petting your head and saying at least he didn't call you a bitch was funny, go ahead and laugh. Laughter is the best medicine. Do you guys like the Three Stooges? Get some funny stuff in the house and watch it together. Brian's anger is over control,things like managing his pills, those are losses for him, that's normal; your response to do the right thing is just perfect.
    That he DOESN'T remember is a MERCY!!! That is a gift. If he did remember his anxiety would be very high, he would be upset and a whole host of other issues. It is harder for YOU, but because of your great love for him, you can bear this.
    God is faithful. Your doing great. It may not feel like it but you are. At the point when your hospice nurses think Brian may have only a few more days or a week you may want to discuss having your boys stay home from school. They only have one Dad and not much time, school can be made up. It's just an idea for you to consider. (I wrote you a long letter last night and my computer ate it.)much love and prayers

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  25. You are doing something I wish I had been capable of doing last year watching my father in his last weeks (which came suddenly even though he had leukemia for years.) You are writing and expressing your love and frustration and confusion and concern. Keep up what you are doing for Brian and for the boys. They may not understand everything now, but they will appreciate your strength as they grow and mature.

    Annemarie

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  26. ps wish I could give you all a real hug, and since that is not possible will ask the Lord Jesus to surround you with his presence and his comfort and that you will reallt sense his precous arms around you holding you up and being your strength. Keep on keeping on, again I say you are doing a great job, no second guessing here.

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  27. thanks for comforting us with your update. i never want to call, because i am afraid it'll be a bad time and i dont want you wasting time talking to me. we're thinking of you all. ben

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  28. Thanks for sharing the ups and downs with us. I hope you feel better--all your boys depend on you so much.

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  29. My heart just breaks for the boys. I just cried when I read that about Gavin trying to learn things in school right now in addition to having to deal with the weight of the world at home. You are doing such a great job, you answer everything for them as openly and honestly as you can. That's all you can do, just let the Holy Spirit equip you with the words.

    I love you and you know we are continuing to lift you all up in prayer.

    Janell

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  30. Praying for you tonight as I climb into bed!

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  31. angie, still praying for you and your boys. i've been through this (pretty recently) and so much of it sounds too familiar.

    it's great to be able to enjoy the summits while you have them!

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  32. Chad KendallFebruary 18, 2009

    Angie,

    This is Brian's boyhood friend, again. Tell Brian I said hello and that I am praying for him. (I am praying for you all.) You may already be doing this, but I want to remind you to get out of the house for a bit when you are able. When someone can keep an eye on Brian, go do something just to change your scenery. It will help with your perspective.

    Pray to Christ (I am sure you are doing this, too.) Seek His help, but specifically ask that His will is done in your lives.

    Read one of the gospels--St. Matthew, St. Mark, St. Luke, and St. John. Pick one and just start reading it, a little at a time. Don't read to see how fast you can get through it. Instead, read short bits and ponder the words carefully. The scriptures are deep and the Holy Spirit will open them up to you and you will find peace.

    You are giving much of yourself these days, being a wife, caretaker, and mother. You need to fill yourself up with God's words. Remember that Jesus would retreat into remote gardens and mountain tops to pray and ponder.

    The blessing of Jesus be upon you

    +Pastor Chad D. Kendall

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  33. Your blog was the first thing I looked at after I turned on the computer.

    Like you I have tears running down my face. Just 4 months ago I was in your shoes. My husband was very ill and on life support. We didn't know for sure what the outcome would be.

    I see the strength and grace that our Lord has given you. Stay in that grace.

    I love you, Karen

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  34. Angie,

    I am praying this over you this morning and waiting in expectation with you for evidence that He hears. I am praying for peace, peace, peace to be with Brian and you and the boys. Jesus will cover the gaps, Angie. You cannot be all things to everyone, but He can. I will pray for evidence of this also so that your heart can be at rest in the middle of the ups and downs. Love you, my sweet friend, Shawn from TN

    Psalm 5:1-3 (NIV)

    Give ear to my words, O LORD,
    consider my sighing.

    Listen to my cry for help,
    my King and my God,
    for to you I pray.

    In the morning, O LORD, you hear my voice;
    in the morning I lay my requests before you
    and wait in expectation.

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  35. Praying for you sweet friend...

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  36. Oh Angie, you don't know me, but I feel like I know you. Thank-you for sharing your life with us. Thank-you for setting such a good example of how to deal with a crisis, when whe have God on our side, and when we believe in Him. Your reaction to your life right now will go on as your legacy to your kids. They will look back years from now, and glean the wisdom and love your example has shown. I am praying for all of you.. daily.. I lost my sister to a Glioblastoma, almost 3 years ago. She died less than 1 year after being diagnosed. It was so hard for us.. She too said some offensive things, but we knew it was not her saying those things.. it was the Cancer.. She loved God, and that was not her character.. I am lifting you up, in prayer.. God will get you and your boys through this, one day at a time.. Liz.

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  37. Do you think videotaping Brian throughout the day will help him understand during times when he feels better? I'm so sorry that his summits are your plummets. My prayers are with you.

    Direct us, O Lord, in all our doings with thy most gracious favor, and further us with thy continual help; that in all our works begun, continued, and ended in thee, we may glorify thy holy Name, and finally, by thy mercy, obtain everlasting life; through Jesus Christ our Lord. Amen.

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  38. Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD Psalm 31:24

    Your courage is a testament of your love for both God and your husband. May he strengten your heart as this disease affects how your husband treats you. You are in my prayers daily.

    Kim

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  39. After watching my daughter pass from this life for yrs, as I read your blog I find my heart healing as your words seem to come from what I have felt before. But as I find that my heart is healing over time I also find it hurting as I seem to shed tears for you all (that I don't even know personally), at this very traumatic time in your lives. I pray that you feel peace from so many prayers being sent for you from so many people!
    Thinking of you oftern,
    The Harper Family from Ironton

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  40. I have something for you at my blog. I understand if you don't want to repost it. You have a lot on your plate but I wanted to give it to you anyway.

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  41. I can't remember if I took my meds and I'm in good health, so it really frustrates my husband, and what you are going through is that times infinity. I'm sorry you have to grow thicker skin, as I would imagine it's already pretty thick. I know, for sure, that you are much tougher than I am. I am so glad you have faith and know that you are the person who was meant to be there with Brian during these difficult times.

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  42. Lots of prayers and good thoughts coming your way.

    You are amazingly strong. You are a rock (although you may not feel like it).

    So many of us are here. For you . . . for him. For your family.

    Take care, you . . .

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