collapsed lung, brain mets, hospice proposed

[SaveMyArchie]

Some of you may have seen the same information laid out a little more incoherently in my latest post but, yeah, this is where we are, all of which has happened in the last 2-3 weeks. I was hoping for a shot at a trial. I think I'm going to go back to the hospital and re-snoop through the chart (last time was two days ago) because the nurses are too rattled to handle me (especially since someone on the floor there just passed away around 6pm or so) and especially since no one is more synchronized than my sister who I don't want to have the burden of telling me what the oncologist said.

I am pissed off that no one knows, seems to know or has asked my mom what she wants or would want. I was away from 7/20-7/28 and despite being at the hospital each day since 7/29 (Sunday), I no longer know if information I'm being told is second-hand, third-hand, speculation, fears, hopes, considerations or decisions that have been made. I asked my dad if mom knows about the hospice referral and I think the answer is no because my mom was just complaining at the visit just now that my sister didn't wake her up when the oncologist came to visit this morning, which is apparently when the onc told my sister (and I know this through my dad) that radiation may not be happening and that treatment will be stopped. Now, because he's the one who signed the DNR two days ago when she was in serious confusion (but she was so much better yesterday and today -- a wonderful reprieve), I asked my dad whose decision it will be to be sent to hospice. He didn't understand my question and I said that "this can get very confusing very quickly" and so I re-posed it as "if it comes to actually sending her to hospice, will they be asking her for permission? is that what she wants instead of staying in the hospital or having an outpatient hospice situation? have they decided she's not capable of making this decision? who will they be going to for consent for this?" He doesn't know. I'm pissed and will be chart-snooping and/or camping out early tomorrow morning to wait for the oncologist so that I can get first-hand information for the first time in weeks.

Final thing -- she told me last night that she wanted to write each one of us a letter and have us do the same and that we'd put hers in a box and open it if she makes it to 5 years (we're at 2.5ish). I am on the fence now about trying to play dumb while bringing up last night's conversation in a falsely speculative manner to see what she wants regarding being at home vs hospital vs inpatient hospice (vs something else if it exists?). Dangerous game I'm playing here, hence being on the fence.

Thanks for reading if you've made it to the end of my post...

[surfingon]

Steve,

I'm so very sorry that your mom's situation seems to have deteriorated so quickly and that her status is so unclear. I suggest that you very first move should be to ask the following questions of your dad:

1. Does your mom have a Living Will/Durable Power of Attorney for Healthcare?

2. If so, who is her designated agent, the person who will make decisions for her when she is no longer able? Your dad may well be that agent, if he was able to sign a DNR for her.

3. Is her designated agent's power effective immediately? (there is a check-box on most Living Wills, which, if checked, circumvents the formality of having to get 2 separate doctors to agree that she is not competent to make decisions on her own. Without that box being checked, she has the right to make all decisions until aforementioned doctors certify her unable/incompetent.) If there is a family member she trusts totally, giving that person the power to make decisions for her effective immediately can circumvent the disastrous situation of having her medical team make crisis decisions for her with which she might not agree.

Please understand that hospice regulations require that both the patient and the family agree with the doctor's assessment that the patient has 6 months or less to live-- and that both accept hospice care. It is possible that your mom's healthcare agent could make this decision for her, IF she has given him/her immediate decision-making power and if it is clear that she cannot make such decisions herself.

All that being said, it is very common that the patient knows more than anyone on the medical team about their prognosis-- so it is never a bad idea to ask the patient straight out: "What is your understanding of your situation?" If the answer to that question seems pretty clear/lucid and is in line with the facts as you understand them, then the next question might be along the lines of "What do you want? How do you want us to handle this and what are your wishes going forward?" These kinds of open-ended questions often open into a frank and very illuminating discussion, as they give the patient permission to say what is on her/his mind.

Steve, it has been my observation in my 26 years of hospice work that some of the most wrenching grief for families to suffeer through is not knowing what their loved one wanted and being haunted by the echoing question,"Did we carry out her wishes? Did we do the right thing?" As tough as it is to address these questions to your mom, it may well be far more wrenching to NOT ask them for fear of the emotional pain you imagine you will feel. My own experience with my husband was that the confidence that I was doing exactly what he wanted every step of the way (because we discussed his wishes often and re-visited them frequently) was totally liberating. I found theat the very matter-of-fact way in which he approached these potentially excruciating conversations was completely inspirational. He was so fearless in that regard. I have seen that same fearlessness in so many of my hospice patients; it has never ceased to awe me.

Please heed SC Midwife's words; look not to the muddled charts for clarity, but into the heart of your beloved mom.

Blessings on your journey,
Rachel

[Granny]

I just lost my dad on July 3, 2012 and he was at home with hospice. We were very open and honest. My brother and I wanted to do exactly what he wanted. Since we questioned him and followed his wishes, we can grieve in peace.
Please be open and honest with your mom. Death of a loved one is hard enough. You don't need regrets haunting you.
I pray for all of you as you travel this difficult journey.
Granny

[Bev G]

Dear Steve,

I have nothing to add to the wonderful advice you have been given. I just wanted you to know that I am sad for you, and my heart is with you in your confusion, fear, angst and grief.

Love,

Bev

[pollo65]

No words of advice, just want to tell you how sorry I am that this is happening to your mom and family. I went through the hospice conundrum before my mom died in April. Prayers for you and your family.
pollo 65

[BrownBagger]

So sorry to hear about your mom's decline, Steve. My dad, who died last October after being dx with metastasized prostate cancer, died at home with home hospice, which is what he wanted. He and my mom had some really good times together during that period, which lasted maybe a month. I had some good times with the old man as well, drinking a little scotch and just passing the time.

However it works out, best to you, you mom and everyone else in your family, my friend.

[CheeseHead]

Steve,

I'm sad for you, your mom and family. Hope that you guys and she can enjoy each other's company and love these days the way she wants.

All the best,
Cheese

[jens22]

HI Steve, I just read your post and I'm devistated. I'm familiar with 2 of the Hospices in our area. I'm happy to assist in what ever way I can. PM me when you get a chance.

[hannahw]

I am on the fence now about trying to play dumb while bringing up last night's conversation in a falsely speculative manner to see what she wants regarding being at home vs hospital vs inpatient hospice (vs something else if it exists?). Dangerous game I'm playing here, hence being on the fence.

I'm not sure I understand what you're saying here, but I think you're saying you don't want to be too direct with your Mom because you don't want to upset her? The chances are, your Mom already knows, at least intuitively, exactly where she's at. I don't think she'll be surprised by your questions and I don't think you need to beat around the bush. Be direct. There's really no time like the present to get a clear understanding of her wishes. I recently started volunteering with a hospice organization and one of the things they told us during training is that one of the regrets family express most frequently after a loved one dies is that they didn't know what their loved one wanted so they have a lot of unresolved feelings about whether they carried out the wishes of their loved one.

One other thing that struck me, and I think it will change the way I communicate for the rest of my life is the following: we were talking about being a compassionate listener and how the best way to do this is simply to listen. Someone asked a question I think many of us were thinking (at least I was) and that was, doesn't asking questions express interest/engagement and allow the listener to clarify and understand what the speaker is saying? The trainers sighted studies in which listeners were asked to write down what the speaker told them. One group of listeners was asked not to speak at all, just listen. The other group was told to ask whatever questions they wanted. In the end, the group that asked no questions actually provided more accurate, clear recountings of what the speaker had said than the group that did ask questions. The studies found that by asking questions the listener often inadvertently redirected conversation rather than allowing the speaker to tell their own story based on what was important/meaningful to them. So, ask your Mom an open ended question and then just let her tell you what's on her mind, no questions asked.

[Bev G]

Thinking of you and your mom today, Steve. I hope you're hanging in there by more than a thread.

Love, Bev

[Nanette]

So sorry to hear about your mom, Steve. I can only imagine how hard it is for you as I haven't been down that road yet...

Sending prayers to you, your mom and family and wishing you peace and comfort at this difficult time. Your mom is lucky to have such a wonderful and caring son like you. She must be very proud of you!

Hugs to all of you,
-Nanette

[SaveMyArchie]

Hi ladies and gents,

Can't overexpress my gratitude at your taking time out of the busy day to write to me. Will PM each of you once I'm done with this post.

Whether this is the end or not, I can't help but be reminded of what we've seen here on the forums -- that the end is fast. So much has happened since last Thursday/Friday, but a lot of it is probably because I've been at the hospital for 2-6 hours every day since getting back from NH last Sunday and seeing so much makes it feel like a lot of detail. She hasn't been nearly as oxygen-dependent as last week. Since Friday evening, she's been on a continuous morphine pump at 1mg/hr. Got a little peeved on Saturday when the nurse unhooked her to let her go to the bathroom and then didn't rehook her until it was me who noticed that the infusion counter was still ticking with no one attached to the end. Meh. Her pain has gone from a 6 to an 8 in her back. Being who she is, an 8 on her scale is a 12 on normal people's scales. Sunday morning was rough -- lots of pain and nausea. Today (Monday) she was pretty responsive but I painfully admit I'm concerned I won't see her in the same way I saw her last Wednesday/Thursday when she was so energetic that her hospital roommate's daughter remarked, "but you're so peppy!" when she heard that this is recurrent colon cancer. Kind of wanted to be snarky about how her 70-year old mother with stage 4 lung cancer had no issue in raising hell for the nurses. That was the same day she, in her usual manner, asserted at my dad that "[she's] coming home," which definitely calmed him down.

He told me last Sunday that he wasn't sure if she WAS coming home and I confidently maintained neutrality and said that "I know it's definitely hard not to think that right now." This forum here -- its wisdom and community -- is what allowed me to say such a thing so genuinely. It let me acknowledge what his fears were without dismissing/minimizing them while also not feeding into it. At this point in the game, everyone is everyone's support. At the same time, while everyone's having their completely understandable knee-jerk reactions, I'm going hour-by-hour when day-by-day isn't possible. To be honest, I'm actually a little afraid for myself -- no one knows except us, you at the forum, one former (AWESOME) co-worker of mine and my new therapist (circa one week ago). I'm so afraid that if I tell anyone I see in common daily interactions, the reflection I'll see of myself in this new reality will trigger some bad stuff. I've already miraculously killed tear-ridden anxiety attacks almost as fast as they've sprouted when I'm at the hospital and I know that I just won't/can't do it anywhere else. A lot of my visits there are spent just keeping company. Not a whole lot of talking is done. Mom said that's fine.

This forum here is also what kept me straight last week when my dad said "oh, you know that it's in her brain, right?" followed two days later by "oh, you know that they're stopping treatment, right?" Tomorrow's therapy session will be all about "when is MY sensitivity going to be considered?" I mean, seems I'm lucky for my own sake that I knew all along that, at least chemically (as opposed to surgically), you're getting close to the end of standard treatment when you hear things like Erbitux and Vectibix (someone please correct me if this is wrong -- last thing I want is to spread misinformation). Hopefully by this time next year, Regorafenib is on that list too. I called a nearby study site and whether they answer my email or not, I'm not certain it will be on ours. I've always wondered what it would be like to be in this position -- I've seen so many others make this stop on their journey -- and I have to say, things are moving so fast that I'm not sure I've caught up with myself. Only a few hours ago did I finally piece together, after some focused thought of what is in front of us, that this trial is unlikely to happen for us with someone at an 8/10 on the pain scale on a continuous Ativan/morphine infusion.

Anyway, before this ramble becomes more rambling, let me end by saying that the inpatient hospice is only 10-15 minutes away from where I am (40 from my sister) so I'm hoping to be a 'field' camp if needed. Mom may be moving there later today is what my sister is saying. Now, about those PMs...

[RixInPhx]

Field camp of family, 24/7 if desired, is pretty much standard at good hospices, based on my own mother's final days a few years ago.

You seem to have a good handle on things.
Please remember that people have been losing their parents for thousand of generations, and the grief is personal while also universal.

Love and prayers,
-Rick