I've been reading everyone's stories here and strongly feel your pain. Our family has been shocked and stricken with pancreatic cancer recently. My beloved mother, 67 years old turning 68 in February, first starting experiencing fatigue like symptoms in mid-October with some abdominal pain. Her primary care doctor ignorantly diagnosed her with acid reflux and she was told to come back 2 weeks later, despite having pre-existing conditions (i.e. Hepatitis C for 35+ years). Her condition greatly worsened and over Thanksgiving, we received the diagnosis of Stage 4 pancreatic cancer which had metastazied into the liver and lungs. I've never met a braver, stronger, more energetic person than my mom. She had more energy and grit in her one hand than I've ever had.
I've been spending time back and forth between my parent's home in NY and my home in the midwest. She had opted to forgo chemo due to the horrible side effects and the fact that it wasn't curative. She is taking a ton of chinese herbs and vitamins and miraculously, that seems to have at least kept the pain minimized because she isn't on any pain meds as of yet. Her energy is incredibly low and she is very depressed. She sleeps all day long (20-21 hours/day) and now can't do seemingly easy tasks (hard time writing legibly, can't pull her pants up, can't ring a bell). She has lost a ton of weight (normally 120 pounds, now close to 100) and is extremely frail and fragile. She desperately wants it all to be over...she doesn't sound lucid either. Her skin seems to have some jaundice but it isn't in her eyes yet. She has always had a flat stomach but now her stomach is like a watermelon because of all the water retention. I have a hard time understanding her on the phone and our conversations last 15 seconds because she has no energy to talk. We haven't brought in hospice yet because she still isn't in pain. When will we know to bring in hospice? When will we know it is the end?
I am so sorry to hear about your mother. This is a difficult thing to deal with, as pancreatic cancer is such a relentless and nasty thing. May things go better than you dare to hope.
That having been said, there is no one right answer to your question. Only you and she will know when the right time is. Hospice programs are flexible, and allow you the choice of when to ask for their help. My personal opinion is that you might as well call now, and discuss the matter with them.
In the meantime, please know that nothing is certain, and not even the progress of pancreatic cancer. While many cases end quickly, some such as mine go on for years. I am 55, and have been dealing with my own pancreatic adenocarcinoma for more than two and a half years. In the last few months, I am actually doing much better than anyone could rationally expect. So do not give up hope.
I have documented my own case in my pancreatic cancer blog: http://diehlmartin.com/cancer.html It is rather long by now, after all this time, but it may give some insight into some of the things which can happen, some of which are predictable, and some of which are very unusual. You may note that I opted to go through surgery, radiation, and many months of chemotherapy. Yes, the side effects were there, but not nearly as bad in reality as I had anticiapted.
May God bless you and your mother.
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html
If your mother is no longer receiving curative treatment, I would say the sooner the better with hospice. They can give you pamphlets which describe the final weeks, days, and even hours. I found them to be on target with most of what my husband experienced. They can also answer many of your questions. Very often we wait to call hospice in because it seems like giving up. They were so very helpful in the final days for us.
Our insurance covered their care 100 % with no deductible. Any medications at all were delivered by their pharmacy any lotions, gloves or equipment were brought in and all of these things were at no cost to us.
Some folks think hospice takes over the care, that was not the case for us. While they are wonderful, in our case they came in about 3 times a week for about 45 minutes. I was very involved in Sam's care and had an incredible support system set up, I don't know what they do if the spouse or child is not able to do as much. At the very end, they were here more often.
In the final days we noticed just what the pamphlet said we would; periods of apnea, mottling of the skin( at first just "dusky" then a deeper reddish purple) on the feet and ankles, less and less output from the kidneys. There was a time when we would sit and count the seconds between breaths and think this must be "it" and then Sam would take another breath. ( this lasted for about 2 days) Some have said the end does not come easily with this cancer, our experience was very different. He was well medicated and seemed to be peaceful. ( He had to be heavily medicated due to a jumping sort of spasm that had started about a week before he passed. (I don't know if that is typical or not, it looked like a baby's morrow reflex- you know, the one where the arms jerk out side to side.) We had been repositioning Sam every two hours 'round the clock to avoid sores and I decided not to bother him at the last two hour mark and he drifted off in his sleep. Our two children (13 and 15) were asleep on the floor beside the bed and I was on a couch pulled right up beside bed. I heard no struggling, no crying out, his hands were at his side where I had positioned them a few hours earlier. It was all very peaceful.
I hope this helps you or someone else in even the smallest of ways.
Your words do give me hope that her last days may be both soon (to stop her immense suffering) and potentially peaceful.
We have now brought hospice in and am so grateful we did that. We have the morphine presciption available as soon as she needs it and they have also brought in a hospital bed, an aide 5 days/week to help her bathe/sponge bath and we are starting with a night aide from 11 PM-7 AM to help her go to the bathroom since she cannot go on her own. We expect she will be forced to either have a catether or adult diaper soon since her energy level is incredibly low.
I was able to spend some very nice (although short) time with her this past week and there is absolutely nothing left that is unsaid. My mom is the most amazing person. I am so proud to be her daughter.
Thanks to all for sharing your experiences and being so kind. You have no idea how much it means to me.