Paralyzed from Cancer and now spending last days/weeks/months at home.

[newlywedwife]

I'm a 41 year old female caregiver/wife to my husband 37 who has been entered into hospice due to cancer.  On March 10th, only 9 months after our wedding, he was diagnosed with lung cancer.  We aggressively sought treatment.  By May the tests showed a small spot on the hip bone, and a spot on the front lope of the brain.  By September when he went to stand up, his legs went numb and we discovered he also had Spinal Cord cancer attacking the Nervous system.  Again we aggressively treated by have surgery to insert an Ommaya Res in his skull to directly inject Chemo to the spine to stop the attack of cancer.  By November, 4 weeks ago, he became too week to travel and is 6'4 118 pounds.  We were advised that the Chemo wasn't helping and turned to Hospice care to now just treat the pain. 

He is bed ridden due to inability to move as the spinal cancer left him paralyzed from the chest down, and for the past 19 days he hasn't eatten, only taking in water, milk and gingerale.  He's skin and bones, but mentally all there.  They say the Milk and Gingerale provide fat and protein for his body, so he can go on for quite some time.  His blood pressure is 118/70 which is good.

I now work from home to provide care for him with hospice...but I continue to worry how long this can go on...What quality of life can one have when they are bed ridden and not eatting.   The Doctors have no predictions, but there are no signs other then not eatting solid foods to show any stages towards death itself. 

How in-humane this all seems...  I have to change his diapers every 3 hours, give him fluids constantly, I get little sleep because of financially I can't loose the house and move him and need to work my normal 40hours a week and then 10-15 hours overtime, and when I do fall asleep I get woken up every 3 hours, so I exist on about 5 hours of sleep a night if that....and that's just what it's doing to me.

For him he's very quite, doesn't discuss much.  I know he feels guilt that we were so recently married and he feels he dragged me into this.  I also know he feels guilty about my having to work so much and he can't contribute, especially since we are in the 6 month stage where Temporary disability is up and Social Security disability doesnt kick in until 12 months, and even with that it could be another 4-12 months for processing time.

With Money tights, the holidays coming, dealing with our 2 girls, working crazy hours and first and foremost helping him and being with him as much as possible, I'm stretched beyond stretched.   I have 3 root canals that have temporaries because I can't afford to get them fixed, I have 1 girl in college and 1 a Sr. in highschool, and now the 1 in college needs knee surgery.

It never ends...The bad news just keeps coming.  How long can we go on like this.  I can't reflect that to him, I need to let him see we are fine and will be fine with or without him so he can leave in peace....but I'm snapping slowly.

I'm scared, I feel alone though I'm never alone, I am angry and I feel like life is screwing him/us/our girls, and most of all I feel like we are stuck in a merry-go-round with no end in sight...the cycle just keeps getting worse...

[cryingeyes]

My heart goes out to you. I'm saying a prayer for you and your family, that you will have the strength to get through this time.

Regina

 

[Kelly]

Dear Members,

We are excited to mention that we are moving to a more new and improved message boards on MONDAY MORNING AUGUST 9th! The boards will be done for a few hours while we are making the conversation. Remember we posted information about this move a month ago. For some of you this might seem a bit sudden,  but when we were reviewing the site we determined the current message board you are using is out of date and the company that designed it is no longer in existence. The good news is this new message board will have new features that have been requested in the past like more fields we can add to your profiles and a chat room up to 20 people at one time. If we find the chat room is bursting at the seams we will add additional room for extra people. All your old posts, private messages and such will be migrated to the new message board. You might have to put up your profile picture again but not sure. The new company will be doing the migration for us. Here is a short list of some of the new features on the board:

- Custom Profile Fields

- Users can customize their profile pages by selecting a background color or background image, with tiling options.

- Facebook and Twitter Integration

- users can respond to multiple posts at once with "mini-quote"

- Pinned discussion threads - like welcome to our board etc.

- Announcements made across some boards or the entire message board

- Search: Users can easily find all content generated by a particular member, by clicking the 'Find Content' button that appears on the main profile page, or in the Mini Profile Popup which can be accessed throughout the board. The results page allows content to be filtered by application, as well whether the member created it or merely participated in it.

- Privacy: allows users to sign in anonymously, hiding them from the online users list. Users also have the option to disable personal conversations and user-to-user emails, as well as ignore other users if necessary.

The next exciting piece of news about the new message board is it will have a new domain name of www.grieving.com for search engine optimization purposes. It will still be apart of Beyond Indigo and can be found through www.beyondindigo.com. We will be redirecting your current URL's to this new domain name but we might miss a few. If that is the case simply go back to www.grieving.com or www.beyondindigo.com to find your message board thread. We will try to make the transition as seamless as possible.

The bottom line is the new board will give us room to grow our community and more options to interact better with each other.

If you have any questions please direct them to feedback@beyondindigo.com.

Kelly Baltzell, MA

CEO/President

Beyond Indigo Family