Back again.. back in the hospital.....back here on grief and bereavement.......

4theloveofmysis

cindysuetoyou said:

This day
I met with the doctors today, and with palliative care. I overcame my fear, dread, and HATRED for the concept of hospice, and I authorized hospice for David. Our palliative care doctor addressed my issues and concerns. Hospice will treat for everything except the tumors. They will manage David's pain and maintain his comfort, and if they cannot help David, they will immediately will admit him to the hospital where he can get the appropriate treatment. If I am in any way unhappy with any aspect of hospice care, I can terminate it at any time and go back to our home health care team.

I told them to go ahead and put a feeding tube in. The procedure is scheduled for tomorrow morning. When I ask David questions, he doesn't answer....except when I ask if he is hungry. He will nod when I ask him that. He watches us when we eat. He will turn his head and his eyes follow us. For that reason alone, our palliative care doctor thought we should go ahead and place the peg. I hope this is the right choice.

Raani, thank you so much for sharing your experience with me. You gave me the strength to take these necessary steps. I don't think i could have faced these choices if you hadn't written to me. You helped me to begin to have a little peace of mind about hospice. Thank you so much, Raani, and God bless you.

Noellesmom, you'd think that since I'm old (54) I would know by now to never say never. I'm referring to my comment "I'll never withhold antibiotics for pneumonia." I hope I didn't offend you, noellesmom, by my prior response to your post about pnuemonia. It takes me a long time to work through all the levels of emotions and to get to a place of acceptance and understanding. The palliative care doctor told me that pneumonia is called "the old man's friend" because it's a "good" way to die. She explained that it's not the way I feared....I imagined David fighting for breath, slowly suffocating, in agony, struggling....she said its not like that at all. Carbon dioxide builds up and you just start sleeping more and more until you don't wake up and gently pass. The thought makes me crazy but I am hoping for a peaceful death for David. I am really hoping and praying that I don't have to make the difficult choice on whether to treat a future pneumonia or not. May God spare me from that choice.

I still have so much fight left in me. I want to scream, argue, beg, research, persuade and fight...I want to keep fighting, fighting, fighting. But I have nothing left to fight with. david is slipping away. The cancer is like a tsunami that is overwhelming me and David. No matter how tight a grip I have on David, he is going to be swept away from me.

I told the doctors that David is a DNR.

Here's a Scripture that I feel fits David: " I have fought the good fight, I have finished the course, I have kept the faith; 8in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing." 2 Tim 4:7-8. David is losing this battle, but he already won the war. His soul is safe for eternity.

Love and blessings,
Cindy

Dear Cindy
So many of us have come over here to follow you and David on this horrible road you have to travel. I hate this road, that I too had to travel. I hope that you feel the love from us and that you know that you are not alone. These days ahead are not easy. I remember them all to well. I think back to those days with my sister. I could do so very little. The only thing I could do is try to bring some little pleasers into those days. My sister wanted rootbeer floats. She was having a hard time swallowing too. So I made them into little frozen suckers. So at this point I would ask someone to go to starbucks for you and get Davids favorite coffee drink and freeze them,and let him suck on them. So that he can enjoy that taste.
My heart goes out to you and your family. You and David are in my prayers.
Love Brenda

Girl2010

cindysuetoyou said:

This day
I met with the doctors today, and with palliative care. I overcame my fear, dread, and HATRED for the concept of hospice, and I authorized hospice for David. Our palliative care doctor addressed my issues and concerns. Hospice will treat for everything except the tumors. They will manage David's pain and maintain his comfort, and if they cannot help David, they will immediately will admit him to the hospital where he can get the appropriate treatment. If I am in any way unhappy with any aspect of hospice care, I can terminate it at any time and go back to our home health care team.

I told them to go ahead and put a feeding tube in. The procedure is scheduled for tomorrow morning. When I ask David questions, he doesn't answer....except when I ask if he is hungry. He will nod when I ask him that. He watches us when we eat. He will turn his head and his eyes follow us. For that reason alone, our palliative care doctor thought we should go ahead and place the peg. I hope this is the right choice.

Raani, thank you so much for sharing your experience with me. You gave me the strength to take these necessary steps. I don't think i could have faced these choices if you hadn't written to me. You helped me to begin to have a little peace of mind about hospice. Thank you so much, Raani, and God bless you.

Noellesmom, you'd think that since I'm old (54) I would know by now to never say never. I'm referring to my comment "I'll never withhold antibiotics for pneumonia." I hope I didn't offend you, noellesmom, by my prior response to your post about pnuemonia. It takes me a long time to work through all the levels of emotions and to get to a place of acceptance and understanding. The palliative care doctor told me that pneumonia is called "the old man's friend" because it's a "good" way to die. She explained that it's not the way I feared....I imagined David fighting for breath, slowly suffocating, in agony, struggling....she said its not like that at all. Carbon dioxide builds up and you just start sleeping more and more until you don't wake up and gently pass. The thought makes me crazy but I am hoping for a peaceful death for David. I am really hoping and praying that I don't have to make the difficult choice on whether to treat a future pneumonia or not. May God spare me from that choice.

I still have so much fight left in me. I want to scream, argue, beg, research, persuade and fight...I want to keep fighting, fighting, fighting. But I have nothing left to fight with. david is slipping away. The cancer is like a tsunami that is overwhelming me and David. No matter how tight a grip I have on David, he is going to be swept away from me.

I told the doctors that David is a DNR.

Here's a Scripture that I feel fits David: " I have fought the good fight, I have finished the course, I have kept the faith; 8in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing." 2 Tim 4:7-8. David is losing this battle, but he already won the war. His soul is safe for eternity.

Love and blessings,
Cindy

Cindy..
Cindy, I haven't been on here much but still check for updates frequently. My grandpa got diagnosed with prostate cancer the week before we lost my brother and now has stomach cancer so things have been... Busy. You and my mom are so so so similar... My parents didn't want hospice at all... Finally gave in and we used them for 3 or 4 weeks... One nurse we had was so sweet...we grew to love her. Stopping the chemo was also a tough decision... Even though it was the chemo that likely killed him. My brother was just like David at the end... Not really there. Couldn't swallow at all- was constantly fighting "outside" problems... UTI's, loss of body temp., kidney problems... My heart aches for you because I know where your at ... And there's nothing I can do or say to make it better. I just hope for peace.... Know, truly know you (and your immediate family) are the best people David could have in his life. I've heard more cliches in the last year than I ever want to know (god doesn't give you anything you can't handle, bad things happen to good people...etc) and while true, I just want to tell people not in our shoes to shut up because there's no rhyme or reason why this is happening. Id give anything to watch my brother play one more game of basketball, or to chase my son around the house... I think about you constantly. Prayers and more prayers...

Raani01

Girl2010 said:

Cindy..
Cindy, I haven't been on here much but still check for updates frequently. My grandpa got diagnosed with prostate cancer the week before we lost my brother and now has stomach cancer so things have been... Busy. You and my mom are so so so similar... My parents didn't want hospice at all... Finally gave in and we used them for 3 or 4 weeks... One nurse we had was so sweet...we grew to love her. Stopping the chemo was also a tough decision... Even though it was the chemo that likely killed him. My brother was just like David at the end... Not really there. Couldn't swallow at all- was constantly fighting "outside" problems... UTI's, loss of body temp., kidney problems... My heart aches for you because I know where your at ... And there's nothing I can do or say to make it better. I just hope for peace.... Know, truly know you (and your immediate family) are the best people David could have in his life. I've heard more cliches in the last year than I ever want to know (god doesn't give you anything you can't handle, bad things happen to good people...etc) and while true, I just want to tell people not in our shoes to shut up because there's no rhyme or reason why this is happening. Id give anything to watch my brother play one more game of basketball, or to chase my son around the house... I think about you constantly. Prayers and more prayers...

I wanted to help you some way, and I don't know how
CIndy, I thank God for making me to write when you said my writing helped you in some tiny way to make your decision. At the same time, I felt incredibly sad knowing the situation I helped (I wish it was to help you to enjoy something in life!). I hope you will find comfort in the hospice staff. From my experience, the approach of nurse and doctor in hospice was very different than in dealing with our NO and chemo treatment. What I felt was the focus of the hospice was not on my husband, it was how to make me happy. They don't initiate any treatments like antibiotic or insulin (I requested to make Jacob's blood sugar under control to avoid future abscess).Their suggestions always to make Jacob comfortable using pain meds. But, they were very open to address my wishes in any way possible ( I remember, the nurse told me she didn't know how to give insulin injection:-).And I had to watch the bath aide didn't use the same wash cloth to wash his face and butt. After I saw it one time, I didn't let her alone ,we both gave bath together(it was hard for me to do alone!). And tried not to let the aide to wash Jacob's face and head, I did myself (Jacob didn't even like ME touching him too much in good times, lol).One day, one of my boys was with his dad when a substitute bath aide came and she shaved off his moustache which made me very upset.Cindy, you are an amazing woman and I learned a lot about "love" from you. I am going to list my e-mail here, if you ever feel like learn about my experience (I don’t know how to give it in any other way), cherucheriljr@msn.com .

There are lots of similarities between things happened to Jacob and things happening to David now.One big difference is that Jacob lost his cognitive ability before he was bed ridden. Even though he couldn’t express his feelings and he looked like he was not aware of things happened around him, I will always wonder whether he knew about his situation.
Take care Cindy! with lots of love,
Raani