Treebywater

I agree with all that is said, and I will also add to the hindsight thought with this: I don't think it's always easy to know when you are in those last months. With Mom, we thought we had time for one more treatment plan at least. WE were ready to get on the bandwagon of a final trial of perifosine. Then the decline came fast and furious. Sure they know in these studies that people were treated the last two months of life--but the doctors and patients might have had no clue themselves that they were looking so closely at the end. Then with our friend, Bob, it was the fight that kept him going. It was the idea that, "Well... Something could work!" that spurred him on. You don't mess with people's hope. You just don't do it. What I read in this is insurance bottom-line rhetoric. It's too costly to do this and this and this. Screw that. Let's fix our health system (and I have NO IDEA how to do that), and save people's lives folks!

Keith and Carleen-- You are both so very much loved.

I haven't stopped praying for TAnn, and I WON'T. I'm so sorry to hear that the decline is going so quickly.

THANK YOU SO MUCH!!!!

Missy-- I totally get it. I do. That limbo land of, well this is the plan unless.... oh I just hate it. It's a hard place to live. I hear you. I do.

Carleen... You ARE doing this. You ARE. You wake up each day, and you keep going. And that is what you will continue to do no matter what happens. It might feel like you can't do this anymore, but you already are. You are remarkable. I'm praying so hard for both of you. Praying that Abba will just hold you so tight in His arms. Praying for any miracle he may give. Praying for special time for you two right now. Praying for pain control. And peace. And healing. We love you both, and we won't stop praying. Val

Ummmmm... I would! Not a loon, Andrea--normal. I'm glad you kept pushing til you could be at peace knowing that you knew.

There should be compassion... I'm sorry they were so cold. I'm also sorry that your Mom and you have been dealt such a devestating blow. I know that it turns your whole world upside down essentially, and for it to be delivered in such an uncompassionate way makes it even more difficult. I second Kasey's ideas. Get your bearings. Get a second opinion. Gather all the information that you can. I can't comment on Cancer Centers in general, but I seem to remember from the little bit of research I did into Cancer Centers of America, that there may be one in that area. I think there is a recent post here about them--check that out, and check into them if that sounds like a good fit. I know they are billed as taking a holistic team approach. Most of all I send you (((((hugs))))) and many prayers. We are here to support you in any way that we can. Know that. When you sign onto this board, you get a whole new bleacher section of supporters to cheer your Mom and you on in this.

Laurel, I'm Val, and I'm in Oak Harbor, WA. I lost my Mom in July of 2005, so I'm in a different spot than you, but I'd certainly be willing to offer any support that I can to you on this journey. It's not an easy one, though in all the hardship there is the privelege of caring for our mother's and giving a fraction back of what they gave to us. Send me a Private Message anytime, or you can email me at haffnerv@hotmail.com. Take care. Val

That article scares me.

One more thing to add--this is thinking of the hospice care husband's grandfather received--if there is a nursing home/hospice overlap (The patient is a hospice patient being cared for in a nursing home or assisted living facility of hospital), especially at first you may go throrugh the, "he's not our patient" bit. SPEAK UP if that happens! Say--I know there is some trasnsitioning taking place but he/she needs SOMEONE To care for him NOW. That was a snag we hit with Grandpa and it really disappointed me.

Our experience was really a mixed bag. I think the thing that suprised me most was how SHORT of a ride it was. I guess I had pictures in my head of movies and experiences of others where there were weeks or months left and there was good quality time left to be had. So I guess my first little bit of advice is--Don't assume that you have time. I very much regret things that didn't get said or done with my Mom even though we supposedly had all this time to prepare. We had a wonderful nurse who took the lead with our case. We all really felt comfortable with her, but we were working with an organization covering several counties so our contacts with her were more limited than I'd expected. She was, however, very easily reached by phone. One thing that I thought was very helpful, if still overwhelming, was the teaching that happened. They really did a good job of preparing us for 'what happened' next, even though it went fast. The step by step how-tos and practical advice given was so appreciated--especially when it came to transfers. They also offered us wonderful advice as to how to make Mom feel comfortable and loved even when she was in her semi-comatose state. I think one thing that I didn't feel (and still don't) feel totally at peace with was the drug monitoring. Because our nurse Laura only came about twice a week, and Mom was only signed on for six days before she died, WE were the ones who were monitoring what was happening with the drugs and hre reactions to them. It's such a guessing game knowing if the reactions your loved one is experiencing are cancer-related, 'the process' related, or drug related. I am not 100% convinced that some of Mom's nonresponsiveness was not due to the drugs, despite us being reassured that it was 'the disease' or 'the process.'. I just have some very unsettled feelings about that whole aspect. Advice I'd give there: Ask lots of questions. And if it doesn't feel right, find out why. Our CNA was fabulous. We only had one, and I really just loved her. She did a wonderful job of doing the practical things like washing Mom's hair and bathing her--things that just made Mom feel good and still human in all that was happening. And she was very gentle with us. The practical help that was offered was invaluable and really freed us up to spend quality time with Mom instead of doing the practical tasks that had to be done. She also did an absolutely wonderful job of teaching us how to help. I remember having Carolyn in one arm, and a washcloth in the other learning how to gently bathe Mom, and she was patient with my dual role at the time. Again I say our CNA was fabulous. All that said, I think another thing that I was unprepared for was the amount of time we still had alone... The number of right-now decisions that we had to make by ourselves. Now, again, this could be because our service provided care for several counties. But the little minute by minute things drove me nuts. Most of our days, even when things were happening so quickly were spent alone. The couple of hourse that we had with the hospice folks just couldn't prepare us for everything, and I felt a lot of uncertainty with that. Even just knowing--does that look mean pain? Or... trying to get through repositioning transfers smoothly. Those things were so scary to do alone. For family members especially, I will say that the nurse who came immediately when I called to let them know that Mom was gone was incredible, and her intuitive support for us was incredible. She was the on-call nurse and not our case manager so we didn't know her, but she was fabulous and walked us through things that come immediately after passing with such grace, and graciousness. As I already mentioned our aftercare was really spotty. That could have been as much my/our fault as their's though. We were given a flier in the beginning about a grief support group... But I don't remember being told the time or place. I think it would have been easier had someone contacted me and said, "If you feel comfortable doing so, we invite you to come try this group." And I would have felt more supported had we seen or heard from someone with the organization after Mom's death past the form letter sympathy cards that we got. All that said--my greatest advice overall is--if at all possible shop around a bit. If your insurance will cover more than one provider, find the place that fits your needs. As I've mentioned in other posts, this hospice wouldn't even consent to a blood transfusion should Mom have needed one, without her signing off the program(though she was able to sign right back on afterward). That made me so uncomfortable. BUT there are others (most recently I've seen the one out here where I am living now) that will even allow you to keep pursuing palliative treatment. So... look into your options as quickly as possible. I know when hospice is called in, time is precious and that's difficult, so it might be something to think about even when things aren't to the point that it is a need. Follow your gut. If something doesn't seem right. If a person doesn't click right to you, say something. Be proactive--call if you have questions, even if it sounds silly. This organization did a great job of getting back to us any time we had questions. As Mom's decline became more pronounced (and as I said that happened to us very quickly), I found myself calling a lot. Remember that even hopsice organizations are like anything else--there will be all levels of quality and some might just not fit you. Ours fit us, "ok." It was a help, but not the tremendous relief that I guess I had come to expect by the frequent comments that, "Hospice folks are angels. They will help you sooo much." Maybe my expectations were just too high. I will say that our experience was overall good. Just not as relieving as I expected and hoped for. So... that's my experience.

Way to go!!! Way to be!!!! I am just so impressed!

Please let them know that we are praying so hard, Don... I'm so sorry this is happening to her.

I'm praying for you all, and I'm just so sorry that this is happening.

I thought I would share this with everyone, since there are so many of us who lost our Mom's or Dad's concurrent with having our first child, or when we had young children who would miss out on a lot of typical "Grandparent moments." I've been thinking about putting together a book of some sort for Carolyn with memories of my Mom. Someone suggested that a long while back here... And I DID tuck it away, and have been working on things in that vein even before that. Today I sent out an email to her remaining siblings asking for them to contribute THEIR memories about Mom. I'm also going to ask some folks that Mom worked with to contribute, and some of her close friends. I want to do the same for Andy's Dad, who he lost our freshman year of college, and suprise Andy with the beginnings of it for Father's Day (even though it will ultimately be a present for Carolyn and any other kids we might have). Anyway... I thought this would be a great way for Carolyn to "know" her Gramma Caro and Grandpa Paul even though they aren't here with us anymore. I have a feeling it will be cathartic as well. Val

Definitely a doer. Gotta get the muscle memory into play. If I try to learn by just watching, or listening, my eyes glaze over.

Normal??? Cause it's driving me nuts!!! I know all the 'sleep better' tricks. It just ain't happening over here. Usually just starts with me feel 'wired' after I lay down and then the replay button gets hit and I'm thinking. It's been especially bad since Bob's decline started, and now that he's gone. Made me think a lot about Mom. Might not be entirely grief-related, but I think that has a hand in it. Really, I just wanted to vent (here at 12:18 a.m.)

Thanks for doing this Frank! I wonder if some of us who have had some experience with Hospice might be able to add some thoughts?

I was just going to ask about Tarceva as well.... In regards to your question about hospice--it all depends on that particular hospice organization. Some say NO life lengthening measures (when we signed on with Mom, she couldn't even get blood transfusions without signing off again), and some will allow you to continue treatment--my friend, Bob's hospice organization was this way, and he continued to have treatment, AND have folks come in and help with things in the home until he was ready to discontinue treatment. Your best bet is to look into the ones in your area and see what your options are. I also know, back in IL, they had an organization I think called, "The Bridge" for people kind of in the middle--needing soem of hospice's services, but still seeking treatment options. I know you have a lot on your plate right now, but if you think that hospice could be a good thing at this point, find out what your options are. Not all hospices are created equal AND not all of them work the same way. Praying for you and your Mom. Val

First of all ((((hugs)))) to you. I'm sorry that your Mom is dealing with this and that you are dealing with it too. The thing about time is no one knows how long any one has. As extensively spread as your Mom's cancer is, without treatment things may go fast. But, she may have a lot more time left than anyone expects. As far as not knowing how to say things to her--As MY Mom used to say, "Act like you're wearing Nike's and Just Do it." It doesn't matter if you stumble or if you cry. This is your Mother. And regardless of whether she's here for 2 months or 2 more decades, time is limited. Keep coming here. We will support you in any way we can.

Oh. My. God. That just makes me want to scream. I'm so glad your Mom is doing better, and I just hate that you've had to go through this hell with the people who are supposed to be helping you! Way to be a good advocate and listen to your guy. ((((hugs)))) to you and your Mom.

Becky's words are so wise. You WILL do this. You will be a wonderful support for your boyfriend. And we'll help you both in any way we can.

I'm praying Carleen. Gosh I know how terrible it feels to have it pile up... ((((hugs)))) to you and prayers for all of your family.

I'm sorry to hear all that is going wrong... Praying right now for all of you. I have the cranial-rectal inversion that seems to be happening is corrected shortly!