Struggling with some issues lately

[Lisa O]

Hi everyone. I have been following the hospice stories with some interest as I am in quite a state of confusion about my own wishes right now. I am currently on Iressa and Celebrex which have held my cancer stable and don't majorly impact my quality of life. I have been told that -of course - any stability is temporary. We know the story.

The problem I have is that I appreciate some of the concepts of hospice - but not all of them. I do not, in any way, want my family to have to be involved in personal care if it comes to that. I have children at home (the youngest is only eight) and cannot have them witness that kind of loss of dignity. With Hospice, It seems there is no choice. With modern medicine, I am wondering if there is a choice.

I also cannot believe that I would want to be dehydrated at the end. I read final gifts and understand that the hospice nurses say that that we dont need water at the end. I can't imagine that.

I am afraid of what I would say or do around my children that may affect them for the rest of their lives. I am afraid of being different than I am. I am afraid of a loss of dignity. Is all of this ok to say here? If not I will delete this.

[DeanCarl]

Lisa,

Of course it's fine to post those questions here. To provide a place where these kinds of issues can be discussed openly and without fear of inadvertantly causing pain to others who may not wish to discuss these things is why I asked that this forum be started in the first place.

Each of us has to make our own choices based on our personal situation and personal beliefs. I am a firm believer there is no right or wrong way to leave this world.

First off the dehydration issue: ALL the doctors or nurses I've discussed this with agree. In the final phase of divesting ourselves of this body it (the body) begins to shut down. First by not eating, then by not drinking. Now please, PLEASE notice I said in the "final phase". I'm not talking a month before death, or even a week. From what I've read and experienced it is only in the last couple of days that the body no longer requires water. My Mom quit drinking about 48 hours before she died. A friend of mine (brain cancer) quit drinking less than 10 hours before he died. I've also been told that forcing water on someone in the last stages of dieing (especially I.V. fluids) can cause the lungs to fill with fluid and bring a lot of discomfort to the person.

One thing to concider. My Mom had hospice care and they had their own impatient facility where she spent her last couple of weeks. It was a wonderful place. Others I've heard of have space they rent from a local hospital. Still others, such as mine, concentrate on keeping the patient at home (which is what I want). So there seems to be many different options available. I might suggest doing some research and finding out what is available in your area and how you might be able to access the type of care YOU want if it becomes necessary.

Lisa, your disease has ALREADY affected those around you. Just as mine has affected the people around me. But I believe that what will affect them more is my ATTITUDE toward this disease and toward my life as I walk this road.

I, too, have worried at times about loss of dignity. Especially if this disease moves to my brain. But my hospice nurse and my VA doctor have bothed told me that brain mets normally do not bring about a change in personalily. And, baring that, it seems to me that *I* am the one in charge of my own dignity. I've seen folks in all kinds of horrendous situations who absolutely refuse to give up on their own dignity, thereby forcing those around them to treat them with respect and dignity.

Lisa, I hope this helps a bit. And I'm praying that you never have to use the information I've written.

Dean

[Lisa O]

Thanks Dean,

That does help. Thank you. I will look into whether there is an inpatient Hospice in my area available to me. So far my family remains in complete denial as my side affects are minimal and other than the surgeries they have had very little to deal with. It is helpful to know that the brain mets don't normally cause personality changes. I was concerned with that... .... (even thought I don't have them). I appreciate your response Dean ... and I appreciate you.

[gail]

I cannot help you with your questions, but I just wanted to thank you for your honesty and bravery with your questions. It helps all of us to voice those fears that our in our heads. This is one reason why I hooked up with a therapist after this diagnosis. I knew after the first two that this was too much for me to handle alone. She was affiliated with my cancer center.

gail

PS: Elementary school teacher now speaking: I teach the 8 year olds. Knowing what my life was like with cancers--my son was in 1st grade, 6th grade, and 9th grade--I contacted the guidance/teachers as soon as possible. (In middle and high schooll I contacted the guidence and let them tell the teachers). I did not want someone yelling at my son if he seemed distracted. I wanted the school to know he had a reason.

That said, I stress strongly to my parents to let me know of serious changes in a home situation. It's handled quietly and professionally, and usally with extra hugs and smiles!!!

[Ry]

Lisa,

Before John's diagnosis I sat on the board of directors of a local hospice in the Flint area. One of the things we did prior to my resignation, was to build a beautiful residential hospice for individuals that for whatever reason could not be home to die. At that time it was only the 2nd in Michigan. There may be one closer to you now. The only other options in our area are rooms set aside in a hospital or a converted hospital.

This facility has large rooms with a window seat/bed for a family member to stay and all the rooms have a view of the couryard. At the end of each wing, there is a family gathering room with a kitchen so family could eat there and wait in comfort and not leave their loved one.

I think you may want to call the hospices in your area and see what each one has to offer and ask any questions you have. I think it's best to do this while you're healthy and make the decesion yourself so that family members don't make it without knowing which hospice in reputable. Ask people that have used a service in your area about their experience. Hospitals are famous for steering patients into their own hospice programs (even though it's illegal) and not providing a list of all the hospice programs available.

Just another thought, a good hospice will be there for your family as much as for you. The one I was involved with did a kids camp and a support group for kids. In addition, they had counseling and support groups for spouses.

I can certainly relate to the denial thing with your family. Man, could we talk! I wish you continued good health for a long time to come.

Rochelle

[Lisa O]

Wow.... It took me so long to post this and now I am so glad I did.

Gail, thanks for the perspective. My daughter's school has been great. My oldest daugther is the one about to boil over... but she won't talk. That is another issue.

Rochelle, the place you describe sounds wonderful. Fllint is not far from me and it puts my mind at ease at least knowing it exists. My whole family is very close to I-75 and flint and Frankenmuth are very frequent stops, so I would imagine if that ends up being the closest NICE facility, they will be okay with it. I will look into the inpatient hospice places NOW though.

Thank you all so much.