<p>Some might feel that “the most aggressive treatment” is playing God. I know all this is so difficult. You are right to try to gather as much info as you can.</p>
<p>LasMa, there are doctors who specialize in palliative care. It does sound like you might benefit from meeting one of those doctors. I’m not an expert at all, but until recently I too thought palliative care was just ice chips, and I couldn’t have been more wrong. </p>
<p>Sick people and their families want to do something, not just sit around while the patient suffers, and if we frame palliative care as aggressive measures to improve quality of life it seems like doing something. I feel strongly that Americans are allowing too many expensive, painful, futile treatments at the end of life, and presenting palliative care as the aggressive response to suffering that it truly is can potentially move people away from painful futile treatments. It’s a way to save money while offering better care.</p>
<p>I couldn’t agree more, in general and in our case. On Monday, I’ll call the primary and get a referral. I think adding that information into the mix might make it easier for all of us, and presenting it as the appropriately aggressive care may help the brother who’s struggling.</p>
<p>LasMa, has your dad’s cancer metastasized to lymph, pelvis or bone? Has he had a bone scan? I know that he has balance difficulties, but is he having any bone pain? The reason I ask is that if the cancer has spread, it may be a factor to consider in treatment. If it has, I don’t think that I would consider treatment of the bladder itself, if it hasn’t and the treatment may prevent spreading and causing more pain, I might want to rethink treatment. Sending hugs and well wishes for your talk with his PMD.</p>
<p>LasMa- the best way to discuss palliative care options is to get a hospice consult. Hospice will give you a much better sense of what palliative care would mean for your father. As Cardinal Fang says, it’s not “giving up” but focusing on quality of life instead of quantity. As to “playing God,” one can argue that aggressive treatment is also going against God’s will. It seems that your brother really needs to see the quality of life he currently has.</p>
<p>I’m noticing a sad pattern. My sibs still have not inquired once about how mom is doing living with us. It’s weird because I would have said we were close before, (3 of us anyway) but I am now so ticked off at them I don’t even want to have anything to do with them. Oh, that was a tangent… The sad thing is that my mom’s friends only seem to contact her (through my email) when someone dies. Mom does not use a computer but she writes letters to her friends. unfortunately letter writing seems to be a lost art for her friends. I am glad they are keeping her in the loop about friends that pass away, I just wish there would be good news scattered in between.</p>
<p>Here’s a transcript of an interesting NPR program about palliative care (in the UK):</p>
<p>[The</a> Place of Palliative Medicine - End of Life](<a href=“http://www.npr.org/programs/death/971107.death.html]The”>http://www.npr.org/programs/death/971107.death.html)</p>
<p>psychomomma- I totally absolutely get your frustration. My mother moved in with us and with 3 siblings, I get almost no help. One sib calls weekly and keeps notes of good stories to tell AND wonderfully lets me vent when frustrated. That sib is far away. No one else does anything and one sib lives nearby.</p>
<p>After a while I did two things, one was I accepted that it is 100% on me 24/7, by accepting that I no longer expect anything and am not disappointed. I am much mellower this way. I also ask for specific help when needed, like to take care of mom when I go on a trip, etc. I am getting some specific help when needed, but not much more! Is it really too much to ask you to call your Mom once a week? Why yes, yes it is ;)</p>
<p>Thanks for making me smile somemom! 
Why yes, yes it is! lol! I agree with you completely - I’m trying to work toward that acceptance of the 24/7 responsibility. I’m sure it’s taking me a while since the whole thing happened so unexpectedly.</p>
<p>LasMa, thinking about you and hoping you get a referral that will help your situation with your brother.</p>
<p>Ugh, what a weekend. Very early Saturday a.m., Dad fell at skilled nursing and hit his head, which meant an overnight visit to ER. He had a very small brain bleed and they admitted him – his second hospitalization in 2 weeks. Today they sent him back to skilled nursing. I went by after work and he was already trying to get out of bed which, with a broken ankle and zero lower body strength, he simply cannot be allowed to do. I had to body-block him while yelling for a nurse. They have a bed alarm on him, and a mat alarm, but what he needs is round-the-clock eyes-on supervision, which of course they can’t do. Or he needs to be physically restrained, but apparently that’s illegal outside of a hospital. The whole bladder cancer discussion may be moot, he may well die from a fall, and soon. :(</p>
<p>I emailed both brothers on Saturday morning, telling them that I felt they needed to come and talk to the doctors themselves about the cancer. I had a really good phone conversation with one brother last night, in which he offered to do anything I needed him to do. The other brother, as of Monday night, still hasn’t responded to the email.</p>
<p>The brother I talked to (“G”) noticed, as I did, in our 3-way conversation last week that my other brother (“J”) seems to be struggling not just with the decision, but more fundamentally, with the idea that we should even be talking about it (“playing God,” “deciding if Dad lives or dies”). G had a couple of perceptive observations; first, that he and I are both married with kid(s), so making important decisions about other peoples’ lives is something we’re accustomed to. OTOH, J is childless and never married, so he’s never had to decide for anyone but himself. So the whole concept seems to be alien and upsetting to him, even morally offensive. </p>
<p>The other thing G said is that, when our parents pass, it will leave a hole in our lives but we have other family – spouses, in-laws, and a new generation of kids to follow us. J has only his birth family – two parents, two siblings. In that way, it will be a much greater loss for him than it will be for us. Maybe he’s gone silent to try and deal with that. I sent another email that I know this is a lot to take in, and we have some time to try and wrap our brains around it. He hasn’t responded to that either.</p>
<p>Last night I also talked to G’s wonderful wife – the only sister I’ll ever have – whose family went through something like this. She told me in no uncertain terms that I’ve done everything that could reasonably be expected of me and more, and that I can’t control how J responds to my request, or how he judges my current actions down the road. I guess I needed to hear that from someone I love, and it helped.</p>
<p>It helps to write it here too. Thank you.</p>
<p>LasMa, you have done everything you should do, and more. You’re a loving daughter and sister, who wants to do the best for your father.</p>
<p>LasMa, was thinking of you yesterday. So sorry to hear about your dad’s fall this weekend. Would some anti-anxiety medication help to calm your dad so that he wouldn’t try to get out of bed? It was good that you were able to speak with your one brother and his wife. They validated all of your thoughts and actions on behalf of your dad. Cardinal Fang is so right. Your one brother gave you some valuable insight into the life and possible feelings of your other brother. I think that what they said is so very true. In my case, I have only one sibling, an unmarried brother with no children. It took several years for me to convince him that mom needed help and for him to step up to the plate to help me out with her care. He seemed to be in shock. Now, he was diagnosed with lung cancer and had surgery last month. I have been running back and forth from CT to NY to help him out and also take mom and my aunt to MD’s, dentists, etc. Hired a new agency for my aunt, (this makes the 6th agency in a year). My aunt was making such a fuss and giving the new aide such a hard time that I just lost it with her. I was so upset and so tired that I ended up standing there and crying. It really frightened her and she apologized and tried to comfort me! Maybe I should have done that a year ago. I guess I am saying that all of us try our best and make the best decisions at the time for our loved ones.</p>
<p>Ah, LasMa and ECmotherx2- hugs to both of you. Not for the faint of heart and we all have a breaking point. Interesting that as the world of the frail inevitably becomes smaller, it can take a bigger event for them to be able to stir in other people. Sometimes we just need to set limits and it can be so hard when things are happening so continuously that we don’t even know we have reached our capacity. </p>
<p>LasMa- so helpful to understand how experiences may shape people’s reaction to aging and end of life issues. Some people cope by complete denial, but often it is simply wishful thinking, coupled with ignorance of how diseases progress and what the context of symptoms might be. I have empathy and patience with those who “don’t get it”, though time can be a luxury as these things unfold also and ultimately, it is the elder’s previously expressed wishes that prevail. I am sorry for your father’s fall. I have seen falling become the nemesis of 3 elders, in all cases impacting not only their quality of life, but also their decisions about prolonging it. Best to you.</p>
<p>LasMa - You are doing as much as you can and admirably holding things together. I think it is the right decision to tell your brothers to contact the doctor if they want more information. It’s really unfair for them to ask you to get more and more information when you have collected plenty. </p>
<p>I do think we all have the same brothers. Mine will be just like your’s and always arguing against making end of life decisions. You certainly have your hands full.</p>
<p>LasMa, I’m so sorry about your Dad’s fall. It is frightening to think he needs restraining but can’t get it. I hope there is some solution for keeping him safely off his feet.
It sounds like you have a gem of a brother and SIL. So glad you feel better after talking with them. Your brother’s assessment of your other brother makes a lot of sense. I still think it’s sad that he wouldn’t be polite enough to respond to your emails. But hey, I have the same brother- still waiting for a response to “mom moved in and will be selling the house where your stuff is stored.” 4 months and counting.
I hope you are taking care of yourself, LasMa- I’m sure the stress is taking its toll.</p>
<p>It’s interesting to discover how many of us have Brothers In Denial! </p>
<p>Meanwhile, skilled nursing came up with a way to keep Dad safe(r). They lowered the bed to a height of 12" off the ground, and with his nearly non-existent lower body strength, he cannot possibly pull himself to a standing position. He may still fall, but it’ll be less distance to the ground, and less potential for damage.</p>
<p>Great idea, LasMa. </p>
<p>A friend had the same restraint issue with her Mom. Mom fell and hit her head repeatedly, but the assisted living was not allowed to restrain her :(</p>
<p>LasMa, I was thinking about that exact solution (lowering the bed). He can still fall out of bed, but he’ll only fall a foot.</p>
<p>Wow, full circle to childhood - my kids went from cribs to mattresses on the floor - so they couldn’t fall very far. Glad that solution is available LasMa.</p>
<p>^^ Not only mattresses on the floor, but diapers too, which Dad now uses full-time (sorry if TMI). </p>
<p>DH sometimes says, “It’s like having a couple of two-year-olds.” I disagree; D was better-behaved than this when she was 2.</p>