On 1/31/2008
daughterpatti wrote:
As others have said before me...this is my first post, so forgive the rambling.
My Mom has had Non-small cell lung cancer for over 7 years. She has had Leukemia for 10 years, but was never symptomatic will either disease for several years.
Her lung cancer was originally discovered as small shadows on a chest x-ray in 2001. Nothing was done for several years - the cancer, (I mean shadows), never advanced. Yeah, I know - great doctors! Finally, during another chest x-ray it was discovered the cancer (oh, did I mention it was cancer) had indeed spread across both lungs.
She's been through 3 rounds of chemo, radiation to her lungs and shoulder (metasized to her bones last year) Tarceva, Iressa, and nothing has stopped the incredibly slow progression of this cancer. It's been a miracle that it's moved so slowly. For so many years, she went without any treatment at all. Living a very independent life as a painter.
She started up again with radiation for her bone cancer, which she tolerated pretty well. In April, she had a bone strengthening drug that just about killed her. So, I moved her into our home with my husband and 5-year old where we could care for her.
My mom had a g-tube in June and has steadily gained her weight back. Nothing but water and a couple pills since then. We had hoped she would feel better with the weight gain. But, steadily, she declines. Just very, very slowly.
She stays in bed sleeping and watching tv 95% of the time. In the last month, she develop fluid under her lung, which I understand is a common symptom of lung cancer. The doctor has given her liquid Vicadin for her pain and cough, which seems to help but only for a few hours. Her cough is so deep that it can cause her to vomit. I've propped her up on 2-3 pillows, but any other suggestions are greatly appreciated.
The doctor doesn't want to move her to hospice since Medicare won't pay for a chest tube to remove the excess fluid. I'm at a loss here because I don't know what I'm doing. I feel as though it's not enough. Does anyone have any suggestions as to when is the best time to call in Hospice? I need some support in caring for her in the best way possible.
Thanks for allowing me to ramble. As you all know, it's difficult to find support for everything you go through as a caregiver of someone you love so much.
Hello. I am so sorry for you, your mother and your whole family. Reading your dilemma brings me back to just 6 months ago when I was caring for my mother. I never imagined what it would be like to care for my mother in such a manner. My mother had terminal stomach cancer at the age of 53 and I was her only child. She was my mom and bestfriend wrapped into one.
My mother too had a g-tube and could not eat or barely drink. I remember it being an almost unreal like state of mind. I was going through the motions to do everything I could for her. I hated seeing her this way and not being able to do more for her. She was so brave but, I know it was for me more than anything.
My husband and two children ages 3 and 5 were so patient during this time in our lives. We called mom's feeding machine "Mr.Robot" around the kids. It was mom's idea in order to make it less traumatic for them. The kids also enjoyed trying out Nana's adjustable bed with the attached controller. (rented it through our local drug store...highly recommended) We even occasionally let the kids help wash the bags from "Mr.Robot" and do other little jobs to make them feel like they were "helping" too. Mind you, they thought that their "Nana" would get better so they didn't worry too much. My 5 year old son was skeptical as he was older and very close to my mom but, we made sure not to tell him that she would get better. I couldn't lie to him. We just told him, we too hope she would but, did not know as she was very ill.
We did have some nurses come into our home almost everyday to check on mom and help us with any questions or concerns. My mom's sister was a blessing too. Her and I traded off shifts
sometimes in order for me to have a little time with my own family.
Mom began having difficulties getting around at all (we rented a portable toilet for her bedroom) and she was feeling stressed about her feeding tube and other things as well. She would cough sometimes so hard it would worry me if she would get her throat cleared. Mom also worried about the the pressure that myself and her sister were under. My aunt was breaking down more regularly.
It got to the point too that we didn't know how mom was doing? At home there was no way to track her progress or regress with any real certainty. We all agreed with her doctor to let her go to the hospital for a while to have her monitored better. Mom was more at ease there. She didn't feel that she needed to be so self sufficient. Nor feel like such a burden (although I never felt that way). After about a week of doing pretty well there, her health drastically took a turn for the worse. She was only at the hospital for about 3 weeks in total until she passed on.
Now I feel like the one who has rambled... I just hope maybe our story helps you realize you are not alone and gives you some idea how we handled our time at home and when we decided it was time to move to hospice.
Please know my prayers are with you all. If I can help you at all, feel free to message me.