Hi I have been reading this message board since my mom came down with Oral cancer for a few years now.
You have educated me and for that I'm very grateful.

Mom is 83 now and has been our miracle surviving Lymphoma stage4 25 years ago.
Now she has Oral cancer since 11/2008. She has had chem/Radiation
and then a tumor showed up in March 2012 where they took it out. Well another tumor has appeared and they can no longer do any treatments she has had her limit. And they have opted out of having the Jaw removed and are going to let her go now.

My question: What is she going to be going through until the end? How long will it be? I don't want her in any pain and I don't feel my family is totally aware of what to expect and I needed some straight answers so I can help them prepare.
I love my mom she has dementia from all the treatments but I don't want to see her suffer what can I do?

Gerri,

I'm so sorry to hear about your mother. Oral cancer and its treatments are brutal. I just lost my 84 year old mother to Alzheimer�s disease (dementia), which is even worse that OC in many ways. She suffered from dementia for a few years and really went downhill really quick this year. She also lost her ability to swallow as part of her decline and at that point we honored her final wishes and got hospice involved. If you haven�t done so already, I would highly recommend contacting a local hospice organization. It was very painful to watch someone die like that, but in my mother�s case she had no quality of life and as many have put it �it was a blessing�. Hospice can help her and you get through this part of her life and will try to keep her as comfortable as possible. My mother did die peacefully in her sleep and was not in any pain.

I wish you the best.

Gerri, I'm so sorry to read this about your mother. Please let us know how we can help. I've never personally dealt with hospice but I know that it's a wonderful resource.


Thoughts with you.

Currently my dad is her caretaker but since we don't know what's to come next were not sure when Hospice should be called.
We don't even know how fast this is going to grow she is at the point now where all she wants to do is sleep and Dad said that he see's her holding her cheeks a lot and they appear pinkish.
They see her Dr's Thursday but I don't know if they will tell him these things or if he will ask. I feel there is a little denial going on with my Dad.

So any guidance is appreciated. And thank you very much for your kind words it's just a difficult time and I want to help.

Gerri

Hi Gerri,

First let me say how sorry I am to hear about your mom. I just lost mine in April to this disease and I can tell you, it was really hard. Hospice is a godsend, they do everything in their power to make the patient comfortable as well as helping the family. The cover every aspect of care, including pain management, comfort, spiritual, and are available 24 hours a day. They will teach you and your family how to best care for her when they are not there, but will be there as soon as you need them to be.
Every patient is different, there is no way to predict how long it will take, even my mom's doctors said she had a matter of months and she was gone in 3 weeks. The most important thing is you spend as much time with her as possible and you get hospice started as soon as possible to allow her as much enjoyment of the life she has left. While I can not say any of my mom's last weeks were "enjoyable", she was very alert regardless of the morphine because hospice focuses on managing the pain, not doping them up. We had countless hours with my mom where we could have very meaningful and heartfelt conversations, though not always lucid conversations, she wasn't sedated like we had initially worried about.
You will find the right balance, with their help, and you will be able to give her the care she deserves. I have no doubt about that. Please feel free to ask as many questions about this process as you need, I don't want to ramble on for hours about my experience because it may be totally different from yours. But it was just a few months ago, and very fresh in my mind, so I could easily share more with you.
Hang in there, it's not an easy road to travel, but you will be ok.
Amy

Hi Gerri. So sorry to hear about your mom. I lost my 76 year old mom almost 5 years ago to pancreatic cancer. My mom died at home under Hospice care. We were told that Hospice is to be called in when someone has a terminal illness and will no longer be undergoing treatments. Your mom's doctor is the person who can write the "orders" for hospice. Contact him and get things started. Just be aware that hospice is a wonderful resource but they are not there round the clock. Best wishes. Wanda

I'm sorry about your mom... And the path all this has taken. The advice given to you is invaluable. No one can tell you - not even the drs. How much time it will take, or what your mother's journey will be, but definitely get a hospice involved to make it easier for her and you. I understand your father's denial they've been together a long time and the prospect of losing your mom must be devastating. Enjoy whatever time you can with your more, and father. (it will help him to have you there) hugs and blessings to you all.

Have you gotten another opinion from a CCC? Many here have been reradiated.

I want to thank you all for your help and support with this time concerning my mom. The common comment here was Hospice and I agree. What problem I run into at this point is that my Dad (A proud loyal man) feels that he can take care of her himself and honestly I don't think he has any idea as to what to expect in the near future.
They live in Montana and I live in California so I am not able to run up there and help out or even ask questions to the doctor. I do try and feed my dad questions to ask and he does try but I'm worried that this will have it's toll on him too if he doesn't get help.
Mom has a wonderful oncologist who has been at her side since lymphoma 30 years ago, he treated her 3 years ago and said that this may only give us added time with her. In March 2012 he said that her body can no longer take anymore chemo/rad treatment (she had a very difficult time during her treatments) So I'm grateful for that.
I just don't know what or how to lead my father to the correct path for her comfort.
How do I go about finding a good Hospice group?
What are the requirements that I need the doctor to submit for us to get this going?
They were thinking of driving down to California for one last visit with all of us but with the speed of this cancer would she be ok driving for two to three days? she has no pain right now.

She is on a feeding tube and has been for 3 years. The tumor is in the back of the side of her check.

I'm feeling not so alone in all this, thank you all so much.

Gerri, I am so sorry to read about your mother. It must be a terrible time for your family right now. I would suggest you speak to her doctor to see if she is able to make the trip to visit. Her doc should be able to tell if she could handle traveling.

Im not sure how to go about finding a good hospice in your area. If it were me, I would reach out to all of the doctors who were treating your mother. They may have contacts. I believe a prescription needs to be written for a patient to receive hospice services.