Doctor talked about mom in hospice in same sentence.....

[janehill]

Wow, I still feel stunned. Mom's being released today and when I spoke with her doctor, he asked me what I think he should do. I love this guy - super aligned with mom's treatment plan from the perspective of her limited physical abilities and not as her former oncologist (he was appointed when she was diagnosed and I dumped him immediately) who wanted my mom to endure IV chemo in her condition - which would have been catastrophic.

At any rate, I still wasn't prepared for his question and I asked, "what do you mean?" He said, "look, your mom has been telling me she doesn't want to live this way, feeling so unwell and hospitalizations every other month and problems and that she just wants to die." And he said that maybe the answer is stopping the Tarceva and engaging hospice if that's what she wants. I know this is true because she's said it to me and everyone else - yet it was tough to hear from him. He asked, "what does that mean - is yes really yes here or is it a no." In other words, he was trying to understand what her real wishes are and not what she only says.

And it's a very valid question. My mother, being the secret agent that she is, is impossible to read. I told him that if it were me and I truly wanted to end it, I would refuse the Tarceva. So I think that although she says she wants to go, her actions speak more clearly.

I really just wasn't prepared for that conversation but I left it off as this: Please leave her on the Tarceva and tell her that she is free to take treatment breaks as often and for as long as she deems necessary to regain her strength and well being and to heal her skin, which cracks and hurts - but is minimal in comparison to what others go through. He agreed.

But the entire talk was strange. Trust me, my mom is almost 8 months out from diagnosis of a malignant pleural effusion (Stage IIIB) and, truthfully, I feared she'd be gone before Thanksgiving - that's how badly she was doing. She's had her ups and downs but, basically, she seems pretty okay to me.

Do you guys think I did the right thing? Advice welcome.

[beat it]

Communication when ever possble is always the best way to answer any question. I agree with KatieB.

I too expected my MIL to have less time with plerua effusion and stage 4. Chemo is hell plain and simmple.

Best wishes for you.

Beat it!!

[RandyW]

you basically hold moms hand and support her in whatever wishes she has. I had a lot of those conversations and it broke our hearts to hear the trurth plain and simple like that. It is Moms wishes and you have to respect that.

YOU ARE DOING EVERYTHING RIGHT THAT YOU CAN!! Just want to tell you that plain and simple. Prayers for You and Mom and family of course.

[moorech3]

I empathize with you so much. It is so hard to know what to do, I find I agonize over every decision...should I ask this or not, should I say this or not. I think you did the right thing and no matter what, if you do it from love, then it is always right. All the best for you and your mom.

[janehill]

You guys are so terrific and I do appreciate it - thank you so much!

Maybe it's selfish but I just REFUSE to make this kind of decision for absolutely anyone except myself. I cannot live with it, one way or the other.

My mom has been talking of her imminent death since I was a toddler (she was fine but felt that she would die any time). Yeah, you can imagine the sense of comfort I had as a little girl thinking my mom would die and I'd be left with no one to care for me. Ugh, whatever! I don't even want to dig into the nightmare that was my mom's mental pathology.

At any rate, since the cancer diagnosis, she's been jabbering full steam ahead about wanting to die, etc. Now, my heart truly goes out to people who have given it a lot of thought and they are just unwilling to endure the hardships of treatment and decide to live out whatever they can with relative comfort, even if it cuts their time short.

What's tough to swallow is the inconsistency. She wants to die and is vocal about that but she takes Tarceva. In fact, when the oncologist raised the potential of IV chemo back in December as a possible future treatment plan, I was aghast that my mom never objected to it.

There is simply no rhyme or reason to her wishes, which is why I asked the doctor to simply advise her to continue Tarceva but to feel comfortable with treatment breaks at any time, for as long as she wishes. This way, it's in her hands.

Okay, I just needed to get that out - helps me think.

Again, you guys are terrific - thank you!

[fillise]

Jane--I think you are right to let the decision be your mother's. I had a cat that was ill for about 9 months and I knew I would eventually have to make the decision to let her go. I thought I was prepared, but when the time came, it was the hardest decision I ever had to make. It took me a week to be able to say the words "it's time" to my vet (who was already gently telling me it was time). At the time I thought, if it is this hard with a cat, I can't imagine having to make this decision for another human. Your mother may need to know you support her decision--whatever it is--but she, and only she, will know when it is time.

I'm thinking about you and your mom both.

Susan

[pammie]

prayers for you and your mom. Tough decisions without good communication. May our gracious God give you both wisdom. pammie

[wendyr]

Hi Jane: the bottom line will always be what does mom want. it;s her life & her decision. With all of that said I support your decision & I think you are right on track with mom's actions & motives. Step back, breathe deep, think fast, talk slow, /Good Luck, God Bless

wendyr

[Flowergirlie]

Good advice given but if I can stress one thing, that would be the SUPPORT issue. I think you are on the right track with the doctor. I know my husband was wanting to go full speed ahead with treatment when talking to the doctor and friends but to me he would say how tired he was of fighting and feeling so horrible everyday. I told him that I understood and was in agreement with whatever he needed to do. Some people have a way of showing you their best all the time but may be feeling like that is what is expected...I do not know what the case is with your mom but my warmest thoughts are being sent to you and your mom in all of the coming days. We are always here for you.

Gentle Hugs...Flowergirlie

[Ann]

I am so sorry that you are being placed in this situation. I know how pressured you can feel when you're trying to make decisions for others. The very best thing to remember is that your Mom should be allowed to make her own decisions about her care, as long as possible. I do know that some patients feel that dying is easier than fighting the cancer, especially if they have experienced a lot of pain along the way. Just keep open communications with your Mom and always try to know what she truly wants. She may be more willing to fight the cancer if she knows how supportive you are. I'll be saying prayers...for both of you.

[tiredmom959]

I am so sorry also for what you're going through. My mom was a little like yours when diagnosed. Chemo was her only option at that point; she had seen sisters and other family members years ago suffer terribly with the side effects and receive little or no benefit.

She seriously considered doing nothing; chemotherapy in her mind was a death sentence as much as the cancer itself. But the doctor said he would reassess her condition half way through; if she were miserable and it wasn't helping, he'd just stop. So in that way, we got her to try it and THANK GOD she did because she had/has had a great response.

Your mom's inconsistently is probably more fear than anything else ... she's probably downright scared of stopping everything, but also afraid to continue. But it sounds to me like you made the right decisions thus far.

Good luck to you, my thoughts will be with you.