Oh, I know your heart is breaking, but this is really best for her care too. No one should suffer pain, and it does tick me off too that insurance companies can rule this way. My prayers will continue for Jeannie, you and your family.

Thank you Outside.

Yes, it is best for her, and that's what counts now. She was in so much pain she didn't even ask to speak to me. I could hear her whimpering in the background. Broke my heart.

I'm so angry at the insurance company. If I were an evil person I'd wish the pain fall back on them and see how they felt about not being able to get something so you could die pain free. Hopefully Hospice will call them first thing in the morning so Jeff can run and get her something that works.

I am so sorry, I know this is a terribly difficult time. My experiences with hospice have been wonderful. I hope they can quickly ease Jeannie's suffering.

Prayers for peace for you all.

I'm so very sorry. Jeannie & your family are in my prayers.

Thank you Riosamba, crl and romy. Your prayers and kind words are a gift.

I'm very sorry to hear this....a tough time for everyone. Sending you thoughts of comfort, strength and courage.

61! So young. Too young. That **** disease. Then there are graces like hospice. I hope Jeanne can find some relief and peace in not having to fight any longer and is able to enjoy some moments of happiness in her final days. Celebrate her life worth lived. Best we can do at such times. Very sorry about all your family is going through.

it's such a difficult time. :( hospice is a godsend and will bring her much needed relief...

with California passing law to allow assisted suicide for the terminally ill, I'm sure more states will follow and over time, more insurance companies will allow the filling of higher doses and iv doses of certain end of life pain meds... death from such awful diseases such as ca shouldn't be so full of pain when there are drug options to ease the pain...

I'm so sorry. I want you to know though that we had a wonderful experience with Hospice. They are very caring people and they have much knowledge of this journey that Jeanne is on. They care for the family, not just the patient. And they will see that she is kept comfortable.

My dad first talked to his doctor about hospice on Sunday and the only reason he wasn't in hospice Monday was that he was still in the hospital with a course of treatment and I pushed for one more day to get things ready at home. I hope they are getting things started as I type. There is a tradeoff with hospice -- you can get more and different things, but you lose the doctors and familiarity.

I'm so sorry and wish you all comfort.

Adding my thoughts and wishes for her physical and spiritual comfort.

Thank you all so much for your kind words, prayers and the comfort wished for Jeannie.
I talked to her hubby a bit ago an she is resting better today with the help of half dose of anxiety med since the insurance wouldn't pay for the Oxycotin. Still waiting for Hospice to call.

They should have been called before now. Are they dealing with social workers or someone in the middle to set things up? I know her DH has his hands full, but I'd be pressing the issue very soon if they haven't gotten the ball rolling. I'm glad she's more comfortable now. Hope she remains at peace.

that is so true lascatx... ideally hospice begins before the pt experiences too much pain...

I am so incredibly sorry! You're right, no one should have to suffer in pain like that. Both of my parents were just recently put under home hospice care, and I can tell you that they (Hospice) are a true blessing. A godsend! They KNOW pain management and will take good care of Jeannie. Her ability to enjoy her time left here on Earth with her family and close friends, not to mention being able to get good rest, will be a blessing to you all.

With my parents, my mother is in the last stages of Progressive Supranuclear Palsy and my father, in the last stages of congestive heart failure with prostate cancer and possibly reoccurring cancer of the vocal cords. Hospice is making their last days, weeks (or months?) pretty much pain-free. They are finally able to get good rest at night, which also keeps Dad's usually mild senior dementia from going off the deep end. Their hospice nurse has streamlined their meds, cutting out many that were no longer necessary, which also helps. For example, why keep someone who is dying on cholesterol lowering medicine?

Hospice has been a huge relief, not only to my parents, but to my siblings and their families who live near them in Michigan. I wish Jeannie and you all the very best during this hard, hard time. My prayers will be with you, as well.

People are always raving about how great hospice is, but I just want to say that hospice services have budget concerns as well. You may get a lot of pain meds from them, but let's hope they are the ones you want. When I was doing home hospice with my MIL a few months ago, I overheard the doctor on the other end of the phone talking with the hospice nurse who was sitting next to me. She asked about the drug my MIL had been given before hospice, and I am fairly certain I heard the doctor say that another similar drug was less expensive. And that's the one they went with.

less expensive doesn't mean less effective....

Actually, Busybee, less expensive and generic drugs can and many times are less effective, but definitely not always. It's a sad commentary on today's screwed up healthcare and insurance companies, whose bottom line is their profits, instead of what is best for the patient. Generic drugs are often times produced out of this country and the quality control is often very lacking. More and more, I'm told, come from China. They can be bought cheap and sold for cheaper than name brands . . . but with sometimes scary consequences. DH was a pharmacist for a number of years before heading to medical school and he has seen this many, many times over the years. As a physician, there are some drugs that he is adamant that pharmacies give only the named drug and not it's generic version to his patients. I won't give specific names, but I do know that some are heart meds and my own hormone meds are another that I do know firsthand of.

Several months ago, my pharmacy accidentally gave me the generic version of mine and I ended up with terrible hormonal problems for weeks before DH noticed the switch in pills. Once back on the brand name and I was fine again. The generic version wasn't bad, but they were not all the strength they were supposed to be . . . and that strength varied from pill to pill, day to day. This happened to me another time with my allergy meds. Same up and down craziness until DH saw that I'd been given the generic version by mistake (?).

But, as I said, not all generics are like this. Sadly, though, too many are.

I encourage anybody interested to go to the fda website and other reputable websites to learn more about generic drugs if interested... I too have family in the healthcare fields and I simply don't agree with your assertion that many generic drugs are less effective--

also, many drugs, brand name and generic are manufactured all over the world.

I think that's enough discussion about drugs on this particular thread...

Lascatx and busybee, up until yesterday, Jeannie has refused Hospice no matter how her Oncologist and family suggest it would be be better for her. She said it would be giving up an she's not a quitter. Period. She didn't even want to talk to anyone from palliative care when she was in the hospital a few weeks ago. Kind as they were to her, she didn't want to talk about what she felt was the step before accepting the end of her life was near. Knowing Jeannie, it could still take awhile.

LynnNM, I can't imagine going through this with both your parents at one time! I'm sure not being close has been so very hard on you. I'll be lifting up your folks, your family, and you too. I'm so sorry.

I'm so sorry you are going through this. Her choice to involve Hospice may be the most life affirming at this time. Hopefully, she will get some relief from the pain and be able to focus on those things in her life that are most important to her.

My mother, with end-stage Alzheimer's disease, has been under Hospice care for almost a year. She is getting such great care so, while she is not improving, she is not declining rapidly either. Peace and dignity is our family's primary goal for Mom and Hospice has helped us achieve that.

I wish you and your family peace, dignity and strength. And take care of yourself, too.

Lynn, I feel for you -- I was in a similar position less that two years ago. My dad was in the hospital when my mom passed. He went in and out of the hospital twice more before being put into hospice.

Graywings, this is neither the time nor the place to discuss the pros and cons of hospice care or even the extent to which insurance dictates treaments and medication choices. Let's save that for other discussions and give justgottabeme our support.

Justgottabeme, I think the choice to accept hospice must be a very difficult thing. I know it hit my dad and me like a ton of bricks, but he accepted it the first time the doctor suggested it. Truth is that he was already in the early stage of dying when we went into the ER that last time. He was in heart failure, kidney failure and liver failure. As he went into hospice, he accepted help he hadn't before and the meds they gave him in the hospital seemed to kick in. He rallied for a bit.

While he was in the hospital and ICU, the nurses didn't say it, but they didn't deny it when I told them what I was reading between the lines was that he might not make it home. Whatever was behind that rally, he did make it home, he got a visit from two of my cousins (their mother and his sister passed about a month before my mom and he had not been able to see her or to attend the funeral). They cooked for him the way their mother and his had made things. He loved it. He got to visit with lots of family and friends, call others and reach out. Most importantly, he got a chance to meet with people and get a veteran's memorial stirred up and moving -- it had been a struggling effort for 7 years. It got moving and the statue was dedicated last November on Veterans Day -- just over 6 months after he passed. He was able to go over things with me so he was assured I could follow his final wishes. One of those may have changed another life. He had almost a month and so much that was important and meaningful happened in that time. And he was definitey more comfortable being at home. He never gave up -- but he did accept more help, including a group of firemen to help move him from his wheelchair to the bed the last time he made that move. The head of that crew knew my nephew, who is also a firefighter, and he knew many folks in the volunteer fire department my dad and brother helped start. I was so afraid my dad would be embarrassed and angry, but he was comforted by their assistance and delighted in the memories.

As said above, hospice may be the most life affirming choice. How can each day be a gift if you are in a strange place or in agony?

I hope Jeannie and her family will have positives to reflect on too.

I'm praying for Jeannie to guide her to acceptance and inner peace. She sounds like a wonderful person, God bless her.

lascatx, I too think it was the best choice for her, but understand how hard it was for her. In her mind chemo would kill the cancer. No one could get her to understand in her state, chemo brain, that it was not going to help her this time. I believe had she gone on it in March, her body would be healthier, if that makes sense, now. The last round of chemo was killing her internal organs and not the cancer.
Thank you for telling me the story of your experience with Hospice. Jeff just now Skyped me after getting Jeannie settled in bed, that she is now under Hospice care. Her visiting nurse called to check on Jeannie today. When she found out that Hospice had not called yet, she contacted the Hospice nurse that she new would be caring for Jeannie. At first we thought that they were going to allow her current visiting nurse to care for Jeannie while on Hospice, but what they meant was that she could still visit and would be in constant contact with the Hospice nurse. When the Hospice nurse came she said the visiting nurse had been in touch with her for the last few weeks so she knew of Jeannie's story through that nurse. She will visit Jeannie every day and has already gotten her the pain pills she needed. She said not to expect them to start taking hold until the morning, but if Jeannie wasn't feeling any better to call her right away and she'd get her on a higher dose until they found what's best for Jeannie, who said she wanted the pain under control, but not so much that she'd sleep all the time. They brought her a shower chair and a commode for the bedroom since this morning Jeff found her on the floor in their master bathroom where she'd gotten up to go the bathroom, fell asleep and fell over. They offered to get a hospital bed there today too, but Jeannie said she wanted to keep sleeping with Jeff beside her. God bless her. And him. He's such a good good man. He barely got out of the hospital from a mild heart attach when she went in last month so this has got to be hard on him in many ways.

Yayagal, thank you so much. She is an amazing woman. Last type she felt like Skyping was last Friday on their 39th anniversary. They had met family at a favorite restaurant to celebrate. She told me how bitter sweet it was.

Just, I'm so sorry about your friend. Am I correct that it's Oxycontin insurance won't pay for? I've taken it twice and I couldn't believe how inexpensive it was. I would get about 12 pills for under ten dollars.

oh, justgotabme, that is heartbreaking but understandable!

we recently had a death in the family of a middle aged person who had a similar attitude-- had been dx with ca a few yrs ago, fought it then finally began losing the fight. hid how bad it was until it was really bad-- don't know if it was denial or not wanting to hoist the white flag or trying to save other family members pain or trying to avoid their sympathy... thankfully, the pain wasn't too unbearable until hospice began and then, mercifully, death followed within just a few days. hopefully your friend will have relief soon.

Thank you Oakley. It's my closest cousin Jeannie, that's so ill. Other than my sister who is 8 years older than me, Jeannie has been the closest female near my own age my whole life. Before she was diagnosed and became too weak, she and I used to talk for 3 hours at a time on the phone. You must have missed the other post about a month ago about her condition/cancer.
And yes, it was Oxycontin. I looked it up and found at the lower doses it was very inexpensive, which ticked me off even more. Had Jeff, her hubby known, he could have just paid for it, but most of her MEDs have been extremely expensive so he didn't think to ask. Most of her MEDs are upwards of $500 a bottle.

Busybee3, I'm so sorry for your recent loss. It's hard to lose anyone you love, but when they are young and want so much to live it's so much harder. Heart breaking in fact. I'm praying in a few days she'll feel up to talking via Skype again. I miss our talks. Last we chatted she said she and Jeff were going through her things. Awhile ago she asked if I'd like her crochet patterns, yarn and supplies. I don't need any, but I want them. Not as much as I want a miracle though.