<p>Until recently my mother was average weight now a little thin at 91. I have no idea why she picks on weight of others. I really did not see this behavior until recent years- maybe it is the lack of inhibitions thing. I did not think about it that way.</p>
<p>Yet another friend is in the process of cleaning out her mother’s house of decades of “stuff.”</p>
<p>You can’t take it with you. You can’t even take it all to a nursing home. :(</p>
<p>MIL and FIL have made progress in several areas since they started the hospice service for MIL. She’s still doing well, the benefit of being off the chemo is still outpacing the spread of the cancer. For now, but now is what she has. They have signed up for meals on wheels, and they have agreed to have private help come in 2 days a week to do chores not covered by the hospice service. That’s a real surprise, we’ve been trying to get them to do that for months. </p>
<p>MIL had a fall, and as is their habit, they called DH to come over and help. He reminded them that the hospice nurse said they should call 911 for falls, since the paramedics know how to help and can get there faster. They hung up and called 911. They didn’t call back to let us know everything was ok, but it was. So we’ve made progress.</p>
<p>Now that I know they will do things if the hospice nurse suggests them, I feel like we have a way to suggest changes that they wouldn’t accept from their kids of kids in law. </p>
<p>I just hope the hospice nurse doesn’t suggest they put all their money with the next Bernie Madoff. I had never read any of Sue Grafton’s alphabet books until I went to stay with my mom while she recuperated from surgery, and she had the latest book at the time, “T is for Trespass,” about a private nurse who is up to no good. MIL still is very sharp unless she is having a blood sugar spike or other acute problem. FIL really seems lost, I’m not sure how he’ll get by when she’s gone.</p>
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<p>I could see how this strategy could come in handy for us in the future – I mean getting someone else – a nurse, their doctor, etc. to suggest changes/help that they need. They ignore most of my suggestions… but my SIL (nurse in their hometown) seems to be getting some traction in their eyes since my mom’s stroke.</p>
<p>When I was there last week my dad ordered (in that “ordering” tone of voice) me to stop worrying about my mom’s toenail grooming. When she was in AL after her stroke, she complained to me when she visited that her nails were too long and they hurt. She had shoes on every time I had seen her, so I wasn’t aware of the issue. I asked the nurse, and they had an aide trim them. They hadn’t been trimmed since sometime before the stroke (about 3 weeks earlier, and maybe she hadn’t done it herself for a week or two before that), and were very, very long. The trimming took half an hour!</p>
<p>I mentioned to my dad that something would be needed if she couldn’t trim them herself – either pedicures or some kind of help from a home health aide (which they don’t have right now) or from him. He took her for a pedicure when she got home, but said (and she agreed) that they would only do that about every 10 weeks. She told me she can’t trim them herself… but a few days later he told me that of course she can, and I was not to bring it up any more. I am pretty sure she can’t, though. Her hands are shaky from Parkinson’s and I think her grip is not strong enough to handle the clippers. I guess he will find this out the hard way. But I think she had been complaining to him about them before I saw her in AL and he had ignored it… doubt he realizes what kind of complications an ingrown toenail can bring. 
I have to just let it go and hope she can advocate for this as she needs to, I guess.</p>
<p>I need some serious wisdom from you folks about how to start a conversation with my brothers about medical treatment for my frail and failing dad. </p>
<p>My father (yes, the one who broke his ankle 3 weeks ago) was re-diagnosed with bladder cancer yesterday. He’s had it like 8 times before, and has always had standard treatment, which is surgical removal of the tumors followed by insertion of BCG (tuberculosis :eek:) into the bladder; the BCG is a weekly treatment for 6 weeks. The doctor yesterday offered the same treatment again, but also said that the best way to treat the cancer at this point would be to remove the bladder. The trouble is, he also said Dad is a poor candidate for this type of surgery and there’s a good chance of post-surgical complications. OTOH, the usual treatment is no picnic either, and is only a stopgap measure, so we’d be back at this same point in 6 months. (Actually, I don’t even know if BCG is an option given that he’s at skilled nursing for the broken ankle; would they be willing to keep someone who pees tuberculosis, especially since he’s incontinent?) So we have arrived at the point of no good options, it looks like.</p>
<p>Dad has deteriorated both physically and mentally since the last BCG treatment in February, and even then he had complications. But the surgeon almost seemed to be discouraging bladder removal. I have a call into Dad’s primary to discuss the big picture – quality of life of all options, how she thinks Dad might stand up to the surgery, how long she thinks it’ll be before his kidney disease or heart disease catches up with him regardless of the cancer. </p>
<p>I am now for the first time thinking that the best thing might be not to treat the cancer at all, and let him live out the rest of his life in relative peace; i.e., NOT underdoing aggressive cancer treatment. Or I should say, I really don’t know if that’s the best thing, but I’m beginning to think it should be added to our list of options. </p>
<p>Our family has always been a full-code family. If the life can be saved, it must be saved, no matter what. But I’ve definitely changed my POV after 4 years of seeing up-close what old age can do. I get the feeling that at least one of my brothers may be reconsidering as well. But we’ve never talked about it openly; no one has ever asked the question, “Is it better not to treat this, knowing that he will die from it?” </p>
<p>I’m a coward, I confess it. If I ask that question, it could be that my brothers will be relieved and grateful that someone finally said it. Or it could be that they’ll recoil in horror from their parent-murdering sister. I just don’t know.</p>
<p>Has anyone had any experience with this kind of conversation in their family? Who brought it up, and how did the others react? Any good opening lines?</p>
<p>I guess I would first get the opinion of the FP doctor. Second I would objectively get an opinion from the oncologist. I would ask the oncologist if this were her/his dad what would they do? Then I would sit down with your dad and ask him his thoughts with the above information- and then he and your mother together. Then ask the siblings last.</p>
<p>Sorry, I should have made it clearer. My brothers and I are the decisions makers. Dad has advancing dementia and has no capacity to make decisions about anything. (Yesterday he couldn’t remember from one minute to the next why we were even at the doctor’s office.) I have discussed it with Mom, who has a lesser degree of dementia, and her response was, “Honey, what do you think?” For several years, she’s made it clear she doesn’t want any responsibility for Dad’s healthcare anymore (a heavy burden she carried for 40 years – long story). In this case, she’s already told me that she wants us kids to decide, and she will trust whatever we do. Before we do anything, we certainly will get her sign-off, but she doesn’t want to be in on the discussion.</p>
<p>I actually did ask the doctor exactly that question – if this were your dad, what would you do? He didn’t seem comfortable with giving me a direct answer, but that’s when he did his riff on the dangers of the bladder-removal surgery for someone as frail as my dad.</p>
<p>The BCG treatment would get rid of the cancer for 6 months as it has in the past, so that is the lower-risk, temporarily life-saving course. But it carries quality of life problems, and it will need to be repeated every 6 months for the rest of his life, as he goes continually downhill. I guess I just think at some point we will need start weighing the benefits of BCG versus the quality of life problems it causes. Maybe that point isn’t now, but it will come.</p>
<p>You’re right about the primary doctor. She’s good at context, and her thoughts are going to be important, so we won’t do anything until I’ve talked to her. I think I will also ask her your question about what would she do if it were her father.</p>
<p>If the primary care doctor says this should be added to your list of options – I would probably then quietly talk to the brother who seems sympathetic to this idea. Sound him out on it… see if you can get some support there so you are not alone if you put this on the table for any other siblings (not sure how many you have). You might also ask the primary care doctor about the BCG option and whether she thinks this would be an issue at the SNF, as that could also affect your decision. I would ask her before I brought it up with the SNF…</p>
<p>Since your father has advancing dementia, I would not treat the bladder cancer aggressively. Why save the body for who knows how long when the mind is gone anyway. Our family’s opinion–we tend to be “sensible” about these things.</p>
<p>My elderly aunt, who was frail anyway and in a nursing home for dementia, had breast cancer. My father asked the surgeon point-blank, “If it were your mother would you do the operation?” He said no. She would be in pain from this horrible operation and not know why. So she would just suffer additionally for the rest of her life. Why?</p>
<p>My opinion is, if the mind is still there, there is still quality of life, no matter that the body is gradually deteriorating or losing parts. 
But if not…</p>
<p>LasMa- In my opinion context is everything for these decisions and I agree with mommusic that it is quality of life that is my goal, not prolonging it with diminished comfort and ever more limited faculties. I have seen life extended in simple ways, yet the unintended consequences become that you essentially forfeit a gracious exit, the kind that nature often provides. </p>
<p>If my 89 year old father with no memory (but “otherwise” with it), has a cancer recurrence there will be only palliative care. I would not put him through debilitating treatment and what is sure to be a much harder recovery now that he is 5 years older. In fact, if he had pneumonia, it might not make sense to treat even that, given what current research suggests about those with his circumstances and the status of his bones. All the parts wear out as my mother used to say, and at a certain point you have to look at the human cost of attempting to keep someone “on the road”. YMMV.</p>
<p>Good luck with your decisions and navigating your family. Know that usually a very good job of keeping people comfortable can be done and that our family has found considerable peace in opting out of invasive treatments, focusing together on quality times and the chance to say good bye.</p>
<p>DH and his father and siblings had to decide what to do with his mother when she developed a recurring, or metastasized, cancer. She had treatment the first time, but it was decided that the treatment she would’ve needed the 2nd time would’ve been more difficult for her to tolerate and adversely affected her quality of life. They all decided to do nothing. BIL had some regrets immediately after she died, but I didn’t hear any other family members regretting the decision.</p>
<p>Talk to her doctor. Talk to your siblings. I hope you can all agree on what’s best to do for your father.</p>
<p>I’m so sorry you are at this point with health decisions for your dad, LasMa. Dealing with siblings for important decisions can be so hard. It took me 7 years to get agreement with mine to clean up my mom’s house to a livable state (hoarder who didn’t “want/need” help,) one sib couldn’t bear to have mom mad at them. I agree with the others- I would try to approach your most sympathetic sib with a conversation about the long-term- what will/could/should the rest of your Dad’s life be like- physically, mentally, emotionally. What are the pros and cons- pain, level of care needed, emotions, side effects, complications, who can be there to provide support, etc. I can see this problem in my future. My mom wants every life saving measure done to her but also says she refuses to be in a hospital or nursing home! Hmm, not likely to have it both ways.</p>
<p>First about me… I’ve been gone, in court to evict bad renters for Mom. Trial continues and continues.
And does anyone know about getting out of timeshare assessments? I should start another thread on that.</p>
<p>Finally, Las Ma, I do have a little experience on that very thing with my mom and brother.
When Mom went in for knee replacement surgery, bro helped her fill out the Physician Order for Sustaining Life. He checked that she wanted everything, antibiotics, feeding tube, comfort measures. You can check off which you want, all or none. My dad, who is not mentally ill, checked off NO on everything. I tried to tell him antibiotics for pneumonia might be a good idea, but he said it is a good way to go. When I got Mom’s I took off the feeding tube, left the antibiotics (she gets bladder infections), left the comfort only measures.
The reason I was so comfortable about this, I might have mentioned before. Grandma died of Alzheimers. At the end, she had a blood clot in her leg, that Mom tried to leave alone, hoping for relief for Grandma. But when it looked like it hurt Grandma, (I say looked like because Grandma was not able to speak by then), then Mom went ahead and Grandma’s leg was cut off below the knee… but she never knew it. She lived 6 more months tied down because she didn’t know she didn’t have a leg and would fall. I think the stop pain comfort medicine would have been a better choice. Although, I’d never say my mom was wrong. She did the best she could every single day. But she did a horror of doing the same thing to me, so I felt OK with the POSL form. My brother did not argue even though he filled it out differently.
I agree, ask your Dr. Get your facts (every 6 months, etc) and start slow with siblings. </p>
<p>I am so sorry you and your family are at that point. There IS help (both for decisions and for care ) if you can just keep asking for it.</p>
<p>I agree with much of what has been said, when the mind is gone, why should we fight to keep the body alive. If any of my family members had dementia, I would only offer comfort care for anything- including no more daily prescriptions except comfort.</p>
<p>If my nearly 90 year old mother, who is physically and mentally doing great, has an issue we would go with what she wanted, but keep in mind, even for her, quality of each day over quantity of each day. Her cardiologist just increased her BP medicine, it is making her dizzy. I think she has white coat issues, and her BP is much better at home than at the office. She wants to go back to her old dosage and said, “I want all my days to be good days, even if that means I have less of them”</p>
<p>We are a pretty pragmatic bunch!</p>
<p>Get her a home blood pressure machine and write down the time and results twice a day and take it to the doctor. I do that with my doctor every time. I take my blood pressure at home for a couple of weeks. Even a couple of days would show if she has lower blood pressure at home. Home blood pressure machines are as accurate as the doctor doing it.</p>
<p>That is exactly what I told her, Shy!</p>
<p>Thanks, everyone. I just had an interesting conversation with Mom (this is the first time I’ve talked to her after the urologist visit; our previous conversation was a theoretical one before the visit). I told her the two treatment options the doctor offered, and stopped. She thought for a minute, and then said, “What if we did nothing?” From which flowed what I thought was a really good discussion of the values of aggressive life-saving treatment versus quality of life. Bottom line, she wants what’s best for him, and if that means a shorter but more peaceful life, that’s what it means. She used the phrase I’ve used in talking with my DH about this: “Let nature take its course.” I told her that I just don’t yet know if that’s the right course – this time. But I said I do think we need to at least start considering it. </p>
<p>So I will talk to the primary on Monday and then have a teleconference with my brothers. I think maybe I’ll take the same approach of laying out the doctor’s options, the primary’s input, and tell them what Mom said – and then stop, without adding any of my own thoughts. I think that one brother in particular may be willing to agree with Mom. Once that ice has been broken among the siblings, I think we’ll be able to talk about it openly.</p>
<p>ETA–psychmomma, that’s the reason I’m so concerned with doing this well. One of my biggest goals for this phase of our lives is that when our parents are gone, the siblings are all still speaking to each other. Despite life-long personality conflicts in some cases, we’ve nonetheless worked well together on our parents’ behalf for 4 years now. I realize how blessed we are that that’s the case, and I want to keep it going.</p>
<p>LasMas - You have a great plan. I too would lean toward the “do nothing” approach but I would get information on 1) the trajectory of the disease with the “do nothing” approach and 2) any pain and suffering expected with such an approach as opposed to the BCG treatment and 3) as suggested above, whether nursing home care is possible with the BCG treatment. Good luck and let us know how it goes. </p>
<p>I need some advice from everyone as to who to tell what. I am accompanying my parent’s in the next 2 weeks to their appointments with their new PCP’s as well as an appointment with an estate attorney. I once asked them, when my MIL had such a condition, if they had a condition in which the best possible outcome was nursing home care for the rest of their lives, would they want to be kept alive. It seems like a different question than the standard living will which addresses survival, not really quality of life. I described my MIL’s situation in which she was given blood, fluids, and antibiotics and that if she survived, the best recourse was nursing home care for the rest of her life (she broke her femur and had surgery to correct it but was unable to transfer from chair to standing without significant help before the break). Their answer 2 years ago was “no.” My brother is not convinced. Should I ask them the same question in front of their new doctors so that the request can be recorded and followed? Should the question also be asked in front of the estate attorney? Remember, they both have early dementia (perhaps Mom is more advanced at this point) but at least my Dad can currently make that decision for himself. Both have looked at my Grandmother’s situation, who died of Alzheimers, and said they don’t want long-term nursing home care (“just take me out and shoot me”).</p>
<p>GT, are you named in the living will as their representative? There are provisions stated that will allow you to carry out their wishes regarding all treatment, care, consultations, etc. Your parents can name you their agent. In the event that they cannot understand or speak their wishes, you can make these decisions such as you mentioned for your MIL, directly to the medical staff and facility. You must show them the document. It is up to you and your parents to discuss what their wishes may be now, in the event of future health crisis. The attorney will probably steer you to putting more general terms in the document rather than specifics. It would help if your brother and you spoke to your parents together so that everyone is on the same page. I gave copies of the document to all of my Aunt’s doctors. The problem is that in an emergency, it will be the ER staff and hospitalists that will be discussing treatment with you. Many hospitals do not allow attending physician to treat their patients, rather it is the hospitalists and teaching staff. They may consult with the primary via telephone so it is good that their primary care doctor be aware of their wishes.</p>
<p>GTAlum,
My first inclination would be to ask them in private about their thoughts, and if you have a sense that they can articulate much, then ask in front of the Dr. … in Mom’s state, the DR can record their end of life wishes with the state so that no matter where they go in-state, it will be there. Usually the AL and nursing homes want that on record anyway… DNR or not is top question, but the others can be answered as well.</p>
<p>My experience is to go public earlier than later, too. My Mom’s Dr. heard her say she didn’t want to be a vegetable many many times, and didn’t blink when he signed the DNR… even though, by that time she was just signing anything put in front of her. </p>
<p>So if you “practice” a little at home, they will probably get out what they want and then you will have a witness on your side if needed. </p>
<p>Putting “kill me now” in black and white can be very tough for the witnesses, but I know I’ve signed it very happily.</p>