<p>Both of my parents refused surgery that could potential helped for a short time. While it was not the same with my in-laws, my husband got enough time to say good bye to his dad. It made grieving a lot easier for my husband.</p>
<p>Karen Colleges above makes a good point. I’ve also seen where DNR seems like a clear enough instruction but there can be much more to it when it gets into the nitty gritty. It can be very hard for a patient or family to make these decisions, much have these conversations, and even harder to make it perfectly explicit what you mean in every conceivable scenario.</p>
<p>This is why it is important for us all to start having meaningful conversations about these topics when everyone is HEALTHY, so that we all have a better idea of what each of us does and DOES NOT want down the road. No order can cover all eventualities. The best advice I’ve read is to discuss your desires with your close family as well as your MDs so that they have an understanding of your preferences and can help have them carried out, giving them power via a medical power of attorney to be sure that it IS carried out by an individual in your family who won’t at the last minute decide to veto it or give in to heroic measures you have expressly stated you DO NOT want.</p>
<p>2kidsnoanswers, what you say is so true about the nitty gritty. Something else I’ve learned over the last 2 years: Almost nothing in medicine is black-and-white. We’d like to think that these documents will arm us with confident answers when the time comes. We like to think that they will provide clarity, almost like a flowchart or decision tree. Dad has such-and-such a medical condition? Answer – treatment will certainly give him more healthy years, so fight like hell to keep him alive. Mom needs such-and-such a surgery? Answer – It certainly won’t work very well or very long, so keep her comfortable till the end. But often, it isn’t like that. </p>
<p>In many cases, doctors simply don’t know that a given treatment will certainly result in a given outcome. Or sometimes there are contradictory indications. Or sometimes they can say that a treatment will probably work well, but only for a short time. </p>
<p>Don’t get me wrong, it’s important to have the documents. But we shouldn’t kid ourselves; in many cases, the answers will still be unclear, leaving it up to the family to make those difficult decisions in the end.</p>
<p>Yea, my candid specialist told me that with my condition, medicine is more an “art” than a “science.” I replied, I’m so glad I found in him the best possible artist. 
He’s exceeded our expectations as to how healthy and well-functioning I am since we started working together in 2000. Further from circling the drain than we had feared back then.</p>
<p>Is it possible to love your parents dearly, and yet resent the heck out of them? I think that’s where I am. </p>
<hr>
<p>That was where I was for quite some time before my mom’s death. She had dementia, and it was extremely difficult. I had countless phone calls that left me drained, I flew to Florida many times to be there for my parents, I tried to convince them to move back “home” because I just could not deal with what was going on from across the country. It was unbelievably difficult. My mom’s death was awful, but it was a blessing in many ways. And yes, I felt … relieved. I think that is normal.</p>
<p>Understandable, kelsmom. </p>
<p>There seems to be so much guilt and so much uncertainly bound up in so many of these stories. Made even worse if the family disagrees. And it seems some of the saddest stories are when dementia is involved. A dear friend of the family had a father who was once in a position of great authority, yet became basically walking vegetable for something like 15 years. By the time he died, the whole family was visibly relieved. It wasn’t that they didn’t care for him, but the beloved man they knew was no longer ‘there’ and hadn’t been for what seemed like an eternity.</p>
<p>
</p>
<p>Himom - While your recommendation makes absolutely perfect sense, you have to remember that not all of us come from families that have these kinds of discussions easily. Case in point, my mom had a hysterectomy when I was two years old. No one ever told me why, but I knew that back in the early 60s, if a woman just looked at her physician in the wrong way, their answer was to rip out all the reproductive organs.</p>
<p>Last fall, a cousin mentioned my mom’s ‘cancer’ scare in the context of our talking about family health histories. But she believed it was just abnormal pap smear. It wasn’t until about three weeks ago, seven years after my mom died, and when I am 51 years old, that an aunt confirmed that my mom had cervical cancer in situ. There was no need for radiation or chemo follow up. My own mom NEVER told me this. You bet I’m angry. It will take me a long time to let go of this, and hopefully I will be able to; D1 had an abnormal pap last spring and although she’s usually very good at follow ups, when she first told me about it, I told her not to worry, but be diligent with the follow up. I knew she didn’t follow up immediately because she was in between medical insurance programs with a new job change. Had I known then what I know now, I would been much more forceful with my recommendation (of course, once I told her about my mom, she did schedule a follow up appt.). I am now having to go back and tell all my regular physicians that my mom had cervical cancer, so that they have it in my records as a risk factor. Had my daughter been diagnosed with cervical cancer and I’d not encouraged her more aggressively to follow up, and something had happened, I’d NEVER forgive my mom. But now BOTH of my daughters know, and will never take a normal pap smear for granted.</p>
<p>So if she couldn’t manage to tell me something that was for my own medical good (and her granddaughters), how could I have expected her to have end-of-life discussions with me? Some people (my mom as an example) just can’t have those conversations, for whatever reason. My mom was a very private person, and evidently, never told any of their friends why she had the hysterectomy.</p>
<p>I also found out last fall, that twice, she tested positive for TB before I was born; they almost sent her to a TB sanitorium. My mom did not believe in talking about health issues. I am doing everything in my power to change how I handle these exchanges with my own kids.</p>
<p>
</p>
<p>I think this is one of the best explanations I’ve seen! And we wish it were true, but it very, very rarely is. If I were still working in hospice, it’s an analogy I’d use, often!</p>
<p>One more quick point, dementia is the disease that is torture on the family, but usually easiest on the loved one; they reach a point where they have no idea what’s going on, and in fact, many of them (not all) are just ‘pleasantly confused’. I’d much rather be pleasantly confused, then know that I’ll suffocate from ALS, Huntington’s, Parkinson’s, etc. </p>
<p>For those who are not so much pleasantly confused, there has been more and more research done on medications that are more like mood stabilizers so that those with dementia aren’t suffering with behavioral symptoms.</p>
<p>teriwtt,My 91 year old MIL is one of those people that for the most part is “pleasantly confused” and has been in a locked memory unit for about 3 years now and hospice care since last April(so your comments about hospice and dementia were very interesting to me). My own 87 year mother died in her own home last year after being in hospice care for 10 days so the idea of my MIL already being in hospice care for almost a year , with no end in sight since medically she is stable, certainly is confusing.</p>
<p>For readers who are wondering, I am not a GYN, but cervical cancer is usually caused by HPV (the reason that many young people are being vaccinated today with Guarasil). There are certain risk factors like smoking, and a weakened immune system, plus some others, but the vast majority of cervical cancer is caused by the virus, human papillomavirus. </p>
<p>Teri, I sent a PM to you.</p>
<p>I don’t think any of these conversations are “easy.” Heck, we haven’t had them with my folks who are VERY private about what they want as well. I hope we don’t have to make any medical decisions as family because I fear we would end up deadlocked & then they would get maximum medical care, since they have good insurance. I think maximum medical care is the default in such cases.</p>
<p>I have a cousin who didn’t even know her mom was adopted (the mom didn’t tell ANY of her kids). She didn’t even believe me when I asked her why she was always talking about hereditary diseases running in our extended family and thinking it might provide insights into her health. She was basing her & her kids medical decisions & choices based on hereditary diseases that she had no genetic connection to–that was the only reason I mentioned it. Her sister found out at a bar when she went out for drinks and appetizers with cousins. She vehemently denied it and was furious with them for lying to her, though it was common knowledge in the extended family. I mentioned it to the younger sister decades later when she and I had become friends, figuring she had been told by her sister.</p>
<p>I wish my family were more interested in talking about the subject but so far haven’t had much success when I have tried to casually broach the subject (remember Terry Schaivo?) Have at least talked with H & my kids some and feel I have a pretty decent sense of what they want and they have a sense of what I want.</p>
<p>These are discussions where it would be ideal to have a trained professional assist in, which is why it would have been good if docs and other healthcare professionals were allowed and encouraged to have these conversations, PAYING the docs for their time and expertise. Those would not be DEATH panels but LIFE AFFIRMING panels that would help the participants decide what kind and quality of life they want.</p>
<p>There are no easy, clear bright lines, but putting the head in the sand as an ostrich is NOT a constructive solution.</p>
<p>teriwtt, thank you for the story and information in #68, about making sure we pass along family medical history to our kids. I’ve been open with D about my own medical history, which thankfully has been mostly uneventful. But I haven’t been systematic about giving her details of her grandparents and other extended family. Your post is a timely reminder to record all of that and pass it along.</p>
<p>sevmom - as long as the hospice agency can document some amount of decline at every recertification period (first certification period ends at 90 days, then each subsequent certification period is 60 days), they can be kept on hospice. For the most part, this is easy to do; however, some people with dementia can sort of stabilize once hospice is introduced and gets the proper equipment in the home/nursing home and gets some proper medications introduced. If stabilization occurs and there has been no decline (weight, cognitive, etc.) hospices are often forced to discharge the person from hospice. To keep them on hospice is Medicare fraud. It’s not to say it hasn’t happened; in fact it has. One of the largest for-profit national hospices has been fined multi-millions of dollars for Medicare fraud for this reason… keeping people on when they no longer qualify. Remember, to qualify for hospice, a physician has to say the person likely has six months or less to live, based on the normal progression of a disease. The key word there is ‘normal’ progression. Of course that looks differently from one person to the next, but the hospice staff has to have documented the decline in their charting. I remember one time being somewhat chided by one of my team managers because in my charting, I happened to mention the patient was having a good day and had actually attempted to answer some questions I’d asked about their faith. This is a patient who hadn’t put two words together in over four months, so my charting made it seem as if this patient were actually improving! So I learned my lesson about being very generic in my charting, in case we were audited.</p>
<p>Thanks,teriwtt, That seems to be what they are doing with MIL-recertifying every 90 days or so.
kelsmom and others, I understand. By the time my 87 year old mom died last year (after being healthy until 81), I was pretty burned out by over 5 years of hospitals, rehab centers, ICU’s, home health,etc. Numerous trips for weeks at a time from my home to help out. Very sad when my mom died but alot of the grief was beforehand- seeing the physical and mental decline was tough. By the time it was over, there was sadness but some relief that it was over and that my sister and I had done right by her. She died in hospice care in her own home(not right for everyone but it worked out for us). But this is tough for all of us dealing with these issues. And all we can do is our best.</p>
<p>One more quick point, dementia is the disease that is torture on the family, but usually easiest on the loved one; </p>
<hr>
<p>Believe me, not all dementia is like Alzheimer’s. I have several friends who have parents with Alzheimer’s, and yes, their parents seem to not realize what is happening to them (although I imagine not all Alzheimer’s is “easy” on the affected, either). My mom’s dementia, on the other hand, was anything but easy on her. She knew very well that things were very, very wrong … but she was powerless to stop it. The stories I could tell you would blow your mind; it is the truth of dementia for many, many people. </p>
<p>One of the (many) things that broke my heart in the final month of my mom’s life was when she told one of her nurses, “I wish you could have known me before.”</p>
<p>kelsmom, I do agree about dementia in the early stages. Both MIL and mom seemed aware that they were declining and it was heartbreaking. My MIL has progressed with it to the point that she really is not at all aware anymore of much of anything. Very sad to see .</p>
<p>This happened with my GF. Her dad recently passed away from alzheimers and dementia, after a long period of decline. She was having a harder and harder time getting ANY sleep to carry on her full-time job, since she had to be aware of when he would wake in the middle of the night & start wandering, including going outside the house and roaming the neighborhood. As she was contemplating options so she could get some sleep, he died one night. She was somewhat relieved, as the dad she knew disappeared long, long before.</p>
<p>Her mom is now starting her decline, so the friend is wearying.</p>
<p>Another friend has a MIL with alzheimers. Has just reached the point where she doesn’t appear to know or recognize anyone or anything. The relatively happy thing is that she is NOT violent and mostly seems happy. My friend & her family will likely be flying down to spend some time with her again soon, but it is taxing on everyone.</p>
<p>Your poor mom, Kelsmom!</p>
<p>HIMom, I was so clueless about how difficult life can be for older folks and for those who love them. After my mom started having problems, so many people I knew opened up about their own experiences. While each story is unique, the heartbreak is common to all. One friend’s dad was a brilliant doctor who had been the county coroner … and his long battle with violent Alzheimer’s shook her to the core. I found such comfort in talking with those who had been there and done that.</p>