<p>Thank you everyone, and a special thank your to teriwtt. You know why Well, the good news is many of the issues I anticipated having to face with the team are fortunately a non-issue right now. It was, interestingly, the palliative care team (who I called in before I left last week) who was giving me a harder time about the decisions that had to be made. Certainly the pushback I got from my bro and his wife didnt help. But, it looks like he will be going to hospice as soon as a bed opens, and interestingly, the facility he will be going to, that will allow a longest stay (several were only 5-7days, and if he makes it past that he has to be moved, and cant go to an equal level of hospice care elsewhere-- interesting rulesâŠ) anyway, it is run by the archdiocese, which will make my brother and his wife happy. Its probably a good thing my dad, a little jewish man, doesnt really know any different </p>
<p>I had a chance to speak to the neurologist, which was very, VERY helpful and really confirmed that I was doing the right thing in advocating for my dad and his living will. He, too, said the living will made it clear that we were following his wishes. I understand that doctors want to treat and heal, but sometimes letting go is what is in the best interest of the patient. Sometimes the hippocratic oath, especially the âdo no harmâ part, means not prolonging suffering or relegating a person to an indignity they could not tolerate.</p>
<p>jym626-Iâm happy that some of the issues you were facing are being taken care of and I hope a bed becomes available at the hospice ASAP. Is the hospice in the same general area as the medical center? Iâm also happy that your Dad wonât necessarily realize where he is. :)</p>
<p>chchipcookie-
Wanna trade sibs? We could probably each use a breather!
Social services called. Heâll be moved in the morning. So we will go to the current hospital very earlyto catch the drs as they round, and then go from there.
Thanks, everyone. This is no fun.</p>
<p>Iâll volunteer one (brother) too. Iâll even pay shipping.</p>
<p>Jym â Sending continued good thoughts. I hope youâll find that once your dad is in hospice care that everything will get a lot more peaceful for all of you, and you can focus in on being with him at this time rather than coping with hospital issues.</p>
<p>I think because Iâve lived this, Iâve hesitated to write.
My dadâs primary was in charge of his dialysis. My dad refused treatmentâhe couldnât talk by then, but pulled out all his tubes and got even more drastic. His other docs and every nurse said 'time to call in Hospice". Hospice would gladly have to come to his apt in an ALF, but sister flew into town and insisted on moving him to local Hospice center.</p>
<p>I wanted a smooth end, but didnât get my way. Important to know that my dads other docs would have signed for Hospice, but his primary consented when confronted. Our local Hospice is absolutely wonderful; I just didnât see need for a move.</p>
<p>I have donated our fish tank and all our cells and glasses to this Hospice; it was nice to see the fish tank still in use.</p>
<p>anyway, hospice would have taken over whether in alf, hospital, or their free-standing center</p>
<p>Yeah, Very similar situation! My mom suffered a stroke exactly one year ago. She lost her speech completely and is paralyzed on half her body. I have three sisters. Two are nearby with her. One is overwhelmed as the primary caregiver, power of attorney, etc.,etc.,etc. and does EVERYTHING. The other sister just argues and is of no help. The other two of us live far away but have taken turns to go down every other month or so. The two of us that are far away would be extremely helpful if we phsically lived closer, but the one who is down there is closed off and defensive and does not know how to put my mom first at this time.</p>
<p>My mom was hospitalized again these past several days from complications, dehydration, high blood pressure, urinary tract infection, high white blood cell count. My sister has already been in touch with hospice. It is not as iminent as Jymâs dad, but can and probably will happen in the next few months. (Of course my sister-the-caregiver and I both have seniors, she has a college senior and I have the h.s. senior).</p>
<p>We feel like we are saying good-bye to her twiceâŠonce when she had the stroke, because her life ceased to exist as before, and then again when she passes away. She is currently in a Nursing Home. She had been getting therapies, but no longer wants to put the effort into them and the Dr. says very little progress has been made. The Dr. said for us to stop torturing her with the therapies and let her âtell us what she wantsâ. She is basically giving up now, refusing to get out of bed into wheelchair, etc.</p>
<p>Jym, and anyone that has been in this situation, my heart goes out to you. I can honestly say I know what itâs like to be a caregiver now, wow what a lot of work. Have you heard of this book? The Daughter Trap, by Laurel Kennedy. Talks about role as a caregiver for aging parents, especially the daughters of the family. Havenât read it yet, but will buy very shortly.</p>
<p>Jym, Best of luck. My thoughts are with you.</p>
<p>jym - Iâm guessing the 5-7 days are part of the Medicare provision for the first certification period. Hospice service works on certification periods per Medicare guidelines. Anyone who is initially admitted to hospice is granted a 90-day certification period and qualifies for hospice services pretty much regardless of how much they rally, recover, etc. Once that initial 90-day period is up, the patient needs to be re-certified (we refer to it as being up for re-cert). To be re-certified, a patient still needs to meet criteria that qualified them for hospice to begin with. The hospice staff needs to be able to document (which is why documentation all along is so critical for our staff) how the patient has declined since being admitted to hospice and the hospice medical director has to sign off on the appropriateness for continued hospice. After the initial 90-day certification period, all further certification periods are for 60 days. So every 60 days, our staff presents the patientâs case at our weekly interdisciplinary group meetings for re-cert. And yes, occasionally our staff cannot justify someone continuing to be on hospice due to a sustained rally. For instance, if someone with dementia and/or failure to thrive (as examples) all of a sudden puts on 10 lbs. in two months (and itâs of course not fluid retention), because theyâve all of a sudden developed an appetite and are successfully eating without choking, then they are no longer hospice appropriate. But once someone is discharged from hospice, with any significant change, they can come back onto hospice. </p>
<p>The reason I explained certification periods is that I believe the Medicare respite benefit is available for each certification period. And jym, if your father is very imminent and youâre at the end of the initial period that the IPU is offering at this time, I doubt very seriously that theyâd demand that he be transferred.</p>
<p>I think youâre finally going to find some peace when he gets moved tomorrow as youâll find thereâs really no arguing from the hospice staff as to what is best for him. The only thing thatâs best for him is to keep him comfortable. Theyâll all be on the same page.</p>
<p>Chocchipcookie â Iâm sorry about your mom. On the one hand, I was glad to have a lot of siblings because we could divvy up a lot of the stuff â I handled paperwork from 1500 miles away (bills, insurance, banking, taxes), but my sister who lived locally basically gave up a lot of her life to help with the hands-on care, especially at night. Sheâs in my will for that. I hope that there is a very special place in heaven for caregivers. </p>
<p>One of the things we heard from our hospice is that people bring them in much later than might have been helpful. If her doctor thinks the time is now, it probably is, and our experiences certainly were that it was a blessing. </p>
<p>I would ask around a bit and find out what Medicare-certified hospices serve your momâs area, and get feedback. In San Diego there were several, and we chose the one we heard really good things about. Where I live there really is one that is hugely dominant in the county, and they are fabulous so it wasnât something I had to think about. </p>
<p>As you can guess, Iâm a big fan of hospice, in part because I saw how it helped calm and focus the whole family. My mom was very much out-of-it, so in that case it probably helped us even more than it helped her, but my dad just relaxed so much after hospice got involved. </p>
<p>jym- my husband and I have walked a similiar road with both our mothers fairly recently. What you are doing and experiencing takes courage. My thoughts and prayers are with you and your loved ones.</p>
<p>It is both sad as well as interesting to see that these type of issues play out in many families. I also have one brother to throw into the trading pool, after our family experience with a dying parent continuing to live out life in the home. We brought hospice care into the home.</p>
<p>jym-I hope that tomorrowâs move brings you peace of mind and your father comfort.</p>
<p>arabrab - you hit the nail on the head in regards to people wishing theyâd gotten hospice involved sooner. I hear it ALL the time. It is a matter of education and sometimes the best educators are the loved ones left behind to share the message. </p>
<p>Two major components of hospice care that everyone should know - hospice does nothing to prolong death or hasten death. Itâs about allowing the disease to take its natural course, but keeping the patient comfortable during the process. Also, anyone can self-refer for a hospice consultation if they wonder if their loved one is appropriate for hospice. Medicare and private insurance groups are very specific about who does and who doesnât qualify for hospice care, such that, no one should be worried that someone is signing someone up for hospice that is not hospice appropriate. If you have the consultation with hospice and the assessing nurse (through conversation with the attending physician and hospice medical director) discovers that the person is not hospice appropriate, they will not sign you up. It does happen every now and then. But what happens much, much more often is people wait too long to call hospice in. And once someone is on hospice, they are not locked in. Patients and/or families can revoke hospice at ANY time if they wish to pursue aggressive treatment for their disease. </p>
<p>No decent, ethical health care professional should feel threatened if you tell them youâd like a hospice consult. But for the consult alone, you do not need a physician referral (and hospices do not charge for a consultation); you only need physicianâs orders to be admitted to hospice.</p>
<p>Can I toss in a sister? Actually she is very good with health issues, but crazy with the rest, but really, we just ignore her :eek:</p>
<p>My Dad had hospice at home. He did not need hospice care until Sunday night, we called Monday and had the hospice bed Wednesday, but he died Thursday. It was too quick, that is for sure. It would have been great to have hospice help on the Monday as that is when he began to have pain with movement and I had to get really creative to get him out of bed and all, but I had some great modifications ideas and it worked well, just having the hospital bed would have helped with the pain during the process of sitting up.</p>
<p>One issue we had, in retrospect, is the morphine. My Dad did not ask for morphine, but they said he was in pain and gave it to him, though a very small dose, he never woke up. I think he would not have chosen that, I think he was hanging on tight to life and would have hung on a bit longer. </p>
<p>He had a great deal of pain just when he moved through a couple of certain positions, if we had used the medical bed and not the morphine, I have a feeling he would have mind over mattered the situation and lived days longer. No proof and no complaint, just a gut feeling. If your hospice patient is fully cognizant, I would ask them more than was asked. Despite being an intense advocate, I feel like I let my Dad down in just accepting what I was told by the nurses without considering that each person is a bit different. Had they said one out of XYZ number of people never wake up from the morphine, I think Dad would have chosen to wait longer to begin it. he was all there mentally and was in discomfort, but not misery and he would have done any offered treatment to live longer.</p>
<p>somemom - this is my take and/or observation of morphine use. My own dad died at home after being in hospice for three months due to lung cancer. He was one of the lucky ones in that he never really had any pain during those three months. In the last week or so of his life, he just became very weak and started to withdraw (very common). This was the disease process. As it so happened, he was showing some signs and symptoms of restlessness/air hunger, so in the last day and a half, we gave him morphine. And yes, he never really woke up at that point, but I donât think he really would have even if we hadnât given him the morphine. He probably would have just slept very restlessly. </p>
<p>Iâve seen some incredibly and unbelievably high doses of morphine given to our pediatric patients, who manage to live for days on these doses. Many people of our parentâs generation are very skeptical of narcotic use. I canât tell you how many times Iâve heard an elderly patient say, âI donât want that stuff, Iâll get addicted to it.â Honestly, we sometimes laugh a little inside when we hear this because weâre thinking, âSo what??? Your disease is going to catch up with you before you need a drug rehab program!â My own grandmother was very distraught at the thought of taking morphine and pretty much refused it all along. She could hide the pain pretty well, but when she became more lethargic and less alert and couldnât control her impulses as well, she did show signs that she was having pain. Even I (not trained in health care) have been trained to recognize signs and symptoms of pain when I see them and report them to the patientâs nurse if the caregiver is doing nothing to help address it. The most common signs are a furrowed brow (especially when repositioning someone), grimace on their face, rapid breathing, increased heart rate/blood pressure, sweating, agitation (seemingly asleep, but having non-purposeful movements). Those are all signs that someone is not comfortable and for the most part morphine is the drug of choice which will help with all of those (even the feeling of air hunger). If not morphine, then ativan or some similar sedative. </p>
<p>Iâve made rounds with our IPU staff, which includes our physician and have heard him explain non-verbal signs and symptoms of pain to many, many family members who wanted to know if their loved one was in pain or not. So you did not let your dad down. The nurses saw something that they are trained to recognize as signs and symptoms of pain and gave the best advice on how to stay on top of it. Pain is something you donât want to let get to the point where someone is pleading for pain relief. Because then itâs more difficult to get on top of it, than it is to just maintain adequate comfort with regular dosing. </p>
<p>So itâs not unusual for us to see people who verbally minimize the pain they feel in order to avoid narcotics. But then we see other signs that indicate their words donât match their reality.</p>
<p>Hmm- I wrote a long post but must have lost internet connectivity and it didnt post. They moved dad to a different room where he/we have a beautiful view of the East river. Still waiting for the transfer to hospice. The thoracic surgeon stopped by and was rather⊠curt. Its clear he is not on board with this, and wanted to be more aggressive. He is a head honcho (head of the dept) and very respected in his field. For that I am most grateful. It explains, but doesnât excuse, his arrogance. The patient advocate stopped in and I had a nice chat with her (and have her card). For now I think we are all generally going in the same direction. As I say, we are not in the same boat, but in different canoes paddling down the same river.</p>
<p>As for the inpt hospice here, they were clear that at this and another nearby medical center their hospice is for patient stabilization and the imminently dying only. He falls under the second category, but it is considered short-term, only for 5-7 days, and thereafter he would have to be moved. (does that make sense, Teri?) I cannot see doing that to him again. I much prefer to get him to a facility where hospice will direct his care. I reread his healthcare proxy and living will, and I am 100% sure I am following his direction, as hard as that is on many levels.</p>
<p>Interesting how many of us have been down this same pathâŠ</p>
<p>jym â Iâm sure youâre following his intent really well, and Iâm glad you have the river to look at this morning. I hope the transfer to hospice goes well today. </p>
<p>Chocchipcookie â Sending good thought to you as well today.</p>
Well, the good news is many of the issues I anticipated having to face with the team are fortunately a non-issue right now. It was, interestingly, the palliative care team (who I called in before I left last week) who was giving me a harder time about the decisions that had to be made. Certainly the pushback I got from my bro and his wife didnt help. But, it looks like he will be going to hospice as soon as a bed opens, and interestingly, the facility he will be going to, that will allow a longest stay (several were only 5-7days, and if he makes it past that he has to be moved, and cant go to an equal level of hospice care elsewhere-- interesting rulesâŠ) anyway, it is run by the archdiocese, which will make my brother and his wife happy. Its probably a good thing my dad, a little jewish man, doesnt really know any different