It's Progressing So Fast!

[CindyM]

Mike- your tip made me fel somewhat relieved. I hope the beeping from Horace's Bi Pap means something else! Jackie- please take Jane's advice and call a friend or family member to come over. You guys should not be alone just now!

 

[nurburch]

Hi Christy,
I am so sorry to hear what you are going thru....I can so relate. My husband too is getting to those roads of'
awlful decisions that we have to make. Scottie was DX nov 06 and is at the point of total care from me. He
can still eat, but is coughing frequently with food/drinks. We too decided that he does not want FT or ventilation. He told me the other night that he doesn't want to die at home due to our children facing
that thought everyday. Our kids are 16,14,9, they help me with their dad daily. He wants to go to hospice and be comfortable. For him the fear wasn't death, but the thought of being a fish out of water. I am so tired and scared of facing the fact of that call will be sooner that later. I too still work fulltime and take care of the kidos. This diease sucks.....i will pray for all of us. thanks for sharing and listening.
sheryl/scottie

 

[fiddleplayer51]

Sheryl,
My heart goes out to you and your family. It's so painful what you have to go through with this disease, and you CALS with children at home are in such a difficult place. I'm so sorry for this daily struggle for you, Sheryl, of trying to maintain a home life for your children and meet their needs, working full time, taking care of your husband, not to mention dealing with your own sorrow and grief.
Please know I'm thinking of you as you make heavy decisions in the days and weeks to come. Thank goodness for the option of going to hospice where a loved one can just be made comfortable if they choose to spare their children the events of the end.
Peace and best wishes,
Jane

 

[JACKIEMAX]

answer about horace's bipap

hello to all who posted. esp. quadbliss. this bipap is not an 'assist' machine. it is one of only two in our city, and it acts as a ventilator. he is the only patient our hospice has ever had on a bipap 24/7. it is set for 16 breaths per min. and it does its job - it forces him to have that many. that's not the problem. it is the fact that his lungs will no longer allow him to accept that much air pressure from the bipap anymore. he is unble to take deep breaths on his own any longer, and that is what is causing cd to build up.

as the cd builds up, it ca'n't go anywhere, thus making him drowsy and sleepy. he will be sleeping more and more of the time now, and eventually will go into a coma. i have not rec'd any private messages from anyone via my real email address, and to the lady that said her husband passed away quietly in april, just stopped breathing, i send my sympathy and ask that she email me soon.

it is [email protected]

thanks for all your prayers and concerns.

jackiemax