Lost my husband to glioblastoma

Roxy here...I am weeping today at the thought of how we never get out of this club.  The diagnosis, the suffering, the death, the emptiness.  I know, I know we will get on but the devastation is horrendous.  I am here for you as well and you can always contact me through face book.  Much love, Roxy

I have had to take care of my wife for 2.5 years..the dementia has been worse than the cancer..I would have had her die 9 months into this thing than watch the horror show that I SEE EVERYDAY..

There was a time that i would have considerd that an out rageous statement....BUT, it occured to me recently that I can't even recall what she was like before the dementia....I know that she was a nice lady who took care of me all the way down to being the plumber and repair person of the family...

Now, she dosen't even know where we are at and as I have said before she resembles one of those actors from a zombie movie.....she can't walk, talk can think a little, but is only there somewhere deep, deep down inside.......

And what 2.5 years (or more in some cases) does to care givers both finanacially and PTSD wise....nobody will ever know....There are things worse than death....

http://finalthirddotcom.wordpress.com/

Hi Roxy:  I remember reading your posts too.  OMG I am so so sorry for your loss as well.  I read on one of your posts that on some construction sites about chemicals.  Do you know what kind they are?  My husband has been in that industry for most of his life plus he worked 35 years for NBSF Railroad.  He had his own company building houses and he built all three of our lovely homes.  Take care.

Jules 

Hello there:  I just finished reading your whole story.  Wes wanted me to do this with him.  But it got so difficult taking care of him and then he did not want to talk much about things so never went through with it.  Yes u are living a world of hurt.  That is such a long time to care for your loved one that needs you in every way.  My husband's memory was not good either, but he did still know what was going on until almost the bitter end.  At the bitter end tho he was hallucinating and making nonsense. The NO believed he had a stroke about 8 days before his death.  That is when he really went downhill.  What a horrible thing for anyone to go through with this horrible cancer.  Please keep me posted on ur wife.  U are truely one amazing man.  I know that most men could not do what you are doing.  

i am so sorry for your loss. my heart goes out to everyone suffering with this monster of a disease that consumes our loved ones and eats them up . my mom was dx in july 2011 inoperable and finished chemo and radiation. we stopped the oral chemo and said no more. due to her neuro status has declined so much and cant get off the decadron. my only wish that i have for god is not to make her suffer, its breaks my heart everyday to see my dad suffering with the effects of this disease on my mom. want to ask a question how was the end was it bad and did he die at home? i am so afraid and i know that it inevitable  but we are still holding on to a miracle and she is still taking the protocel  which is an anticancer medicine that is not fda approved.

please advise.

and may god alleviate your pain and may your heart be strong and may gos help us all going through this devasting disease. compassion for all of us and dignity to the cancer patients.

god bless eida

Oh I am so sorry to hear about your mom. Yes this is a horrible horrible cancer.  I was fortunate enough to know what to expect at the end and what to do for him.  His last eight days were in the hospital.  He really had no pain i mean serious bad pain until like the last month of his life.  The third day of his life I was feeding him and noticed he would not swallow his food.  I would have to tell him to do so.  Then it got to the point he just did not want to eat.  That same day.  I decided to NOT push food on him for he could have bad consequences if I persisted.  They the patients are not hungry when close to death.  I made sure that he was given pain medication and anxiety medication to help him.  The last two days he did not talk anyways, so why make someone suffer?  Then the nurses came in to roll him over so he would not get bed sores he would moan and also he would moan while sleeping.  So I was on those nurses constantly to make sure he was comfortable.  My husband did get to go in peace.  He died in his sleep.  Thank The Lord for that!!!!!!!!!!!!!!!!!!  I know I did everything in my power to make sure he was as comfortable as he could be.  Gosh I miss him so.  Take care.  I hope this helped you.  Every patient is different tho.  I pray when God decides to take your mom she is at peace too.  

jules

Jules,

I am praying for you that you remember all of the really happy times, and that they make you smile. Take it day by day, some days, hour by hour, CC is still here, we are all in this together

Cathy, Julia's mom 12/2002-01/2012

Jules,

I am so happy you remeber me!  and that you read our posts.

The "stranger" that you remeber me writing about was actually not a stranger at all. it was De from this very website. " number9" It was truly an amazing experience with her here. someone who had experienced an actual brain cancer passing only months before. I dont know how she handled it twice, but it was a blessing. I would also love to talk to you. this is such a crappy life we have been given... However  i refuse to belive this is it for us.. NO WAY!!!!  we went through this, we MUST be stronger then before we entered this battlefield.

Something must have been gained from this.. it must have, I refuse to think otherwise.. although as I sist here im coming up with nuthin!!  lol

anyway Jules, please please call me.. Ill inbox you my number, and Cathie... I cant belive your on here offering help, and prayers you AMAZE ME!  I pray for you daily cath! and your sweet baby Julia..

and Jules of course... Prayers, Im so glad you took this step, and are conversing on here.

Linda

Jewels, please find the love for Wesley in all your treasured memories and keep them alive in your heart forever.  So sorry to hear of Wesley's passing.  Take one moment at a time and hopefully you will find some kind of peace and serenity in the process.  I find it so easy to say I hate this cancer and so hard darn to find warming words of comfort  but know in your heart I am sending my sympathy. Thank goodness he had you.

Roxanne 

Hi to you all wonderfull ladies, God Bless you... he will, I just want to write to tell my story and I found so many coincidences in your stories.

My Mom 70 was diagnosed on Feb2011 with GBM4, 80% right lobe, 20% left, it went very fast.  Doctors said nothing can be done, they gave her 2 months o maybe just a couple of weeks.  They scared me with all the things they said she would have.  Nothing happened at all, not even oxigen or a single trip to the hospital.  From that day, I turned my own room into a "kind of hospital area" I was the primary caregiver.  By April, she went bedriden, just the month the Doctors said she will die, my Birthday month, I was so very scared all the time.  However, for my birthday on April 1st, we took her to Antigua Guatemala for the whole weekend she loved her time near the pool... priceless (by the way, I am from Guatemala... this horrible cancer doesn´t care about borders) She was very peaceful, not a single headache, we were blessed from day one, we accepted she was going to go so we have her listening music all day and praying. She finally passed away during her sleep on July 29, 2011 (6months).  We knew we were close because she stopped eating, she didn´t eat for 10 days before.   She had a saying "sick people who eat don´t die" that keep ringing on my head for the last days.   A huge help was brainhospice site, it gave me a timeline of events, everything happened but the pain.  Just the order was different and the time each step.

When I say "we" I am refering to me and the best man I have ever known, my Dad, he is turning 81 tomorrow.  Now 6 months after she passed I have seen how he is in a roller coster of emotions, we have had counseling, and it has helped.  We pray together everynight, he stays alone in our home all day long, and when I return to my home (I am single 37years) sometimes he is mad, sometimes he is sad, he event took away all the pictures were she was. I guess it´s normal, but God will soon give us peace, to all of us... BELIEVE IT WILL HAPPEN.  I don´t want to forget, I just want to pass through this.  Although we lost our beloved Mother and Wife of 44years of marriage, I see that we were blessed because this horrible cancer gave us time to be closer to God, and give her as much love as could be possible before she return to Our Dad.

Take care, pray, try hard to smile, even in the hard days... when you feel sad, try to help others that will help.

Beatriz