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Can't sleep. Sil emailed me earlier that mom's hand was swollen and painful tonight (brother saw her at noon and she was fine) and that she was weeping with pain. WTF?????? DO I REALLY NEED TO HAVE THE PAIN MANAGEMENT TALK WITH THESE FOLKS AGAIN?
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Oh, the list of hymns has been written out long ago. We're quite the planners! Mom passed this trait on to me in spades. Veronica, thank you for your thought step by step. We are a rather stiff upper lip bunch--Mom is Irish Catholic by heritage, but my dad was Italian. Thus, we kids are a bit more emotional than is the norm where she comes from. Throw into this the fact that the whole family is Catholic, except that I'm Jewish. And Mom feels terribly guilty about that. She's always praying for me. Oy, this is going to be an interesting journey, my friends. Emjo and CM, vstefans, Maggie, and all of you, thanks for being by my side.
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I concur with everything Veronica said. Absolutely.

You're doing so brilliantly. I am beyond impressed. There's just an inkling at the back of my mind, that - in private, if you get a minute on your own - it is also perfectly all right to flap about like a wet hen and go to pieces. I'm pretty sure I'll need a few of those moments when it's my turn, anyway.

Hugs, I'll be thinking of you.
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I don't feel it is absolutely necessary to bring in hospice if brother does not want it. The NH deals with a great number of deaths and probably can keep her comfortable.
she sounds very peaceful now and not too distressed. As long as SIL sees her most days and intervenes if she see things she needs adressed.
As long as no one tries to send Mom to the hospital which is the most important part of this. I don't think you need to tell Mom anything unless she asks and then the truth and let her talk. She may want to choose her clothes to be buried in and request certain hymes if there is a church funeral. Things she wants in her obitury are other things she may want input into. So prepare yourself when you visit on Friday she may have a lot of things on her mind. If she still wants further treatment then I think you should honor her wishes until she says stop. Just don't sugest things to her or ask her if she wants to go back to the hospital. Other than that keep your visit as normal as possible and make sure you tell her how much she is loved and mention good things she has done that you really appreciated in the past. I know this is going to be very emotional for you but do your best to remain calm. If she starts to cry it's OK for you to hold her and cry too. If she is afraid validate her fears but tell her you will do your best to make sure she does not die in pain which is most peoples fear. Let her know that the family will miss her but that you will all be alright and take care of each other. Offer to get her a priest if she wants. Blessings for you Mom and the family. it's so hard to let go.
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oops -you wrote about what "we" tell mum, so I gather it will be a family effort.
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(((((hugs))))) again, Your instincts are right on target. Can you get your bro to speak to the pulmonologist, so he is the :bad guy: rather than you? I know there is a limit to the number of taps they can/will do. I am so glad that your mum is peaceful. I guess hospice will be called in and their job will be to keep her that way.

I read in an earlier post that you told your mum you would tell her when things got worst. You have as good as or a better sense as anybody how she will take the news . Would it be useful to run it past any family members for ideas/feedback? I have no been in this situation so have no experience.

You are doing so well.
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I talked the pulmonologist this afternoon (he's the head of dept.) He feels that no intervention, such as further chest taps, are indicated. He also shared that his own dad died with a pleural effusion/chf at 93. He said "you want to keep her out of the hospital, no more poking and needles. Make her comfortable and let her be at peace". I'm all for this. Hope I can sell it to brother. What do we tell mom? That's a big question for me.
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Thanks to all of you for great answers and hugs! SIL (saint, in my opinion) visited with Mom last night, said that she's comfortable, not in pain and not anxious. Asked for SIL to cut her nails, no she's still concerned about how she "presents", which to all of us seems like a good sign. Still waiting for the pulmonolgist to weigh in on "what to do" other than what is being done. I'll go up and Friday and see what there is to see. This is still Mom's decision to make, to fight or not, I think.
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That displacement thing is as common and normal as rain - when there is a BIG thing going wrong that you can't fix, it is only natural to focus instead on something smaller that maybe could have gone better. Hugs and hope! Hope for mom to have a comfortable and easy time before moving on to a better place, and for the family to be able to carry on and feel some peace with one another and with all you have done to care for her and make all the best decisions you could.
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babalou, I hope youngest is coming to see her this weekend. It is time for that. It's time to all be on the same page, and set her free.... (((hug))))
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Just had a really good talk with youngest (aka disinvolved) brother. He gets what's going on. His eldest is having problems. Never assume that your siblings are uninvolved because they hate you!
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I am not sure about the displacement. After taking care of my parents for the last 5 years - they have become so dependent on me that they expect me to fix every issue. When the details don't get handled - there is no one else to fix it.
I rely on the assisted living staff and doctors, labs and hospitals to keep up their end. When they don't, it takes hours of follow-up to make sure that things get done. It is a lot of responsibility and pretty much a full time and thankless job.
I get on rants too - because I am exhausted being the go to person for all of it.
Then the guilt sets in after the rant - since they really can't take care of themselves. I think they both will outlive me - this is one tough generation.
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Thanks to you all for your answers and encouragement. According to NH she's not in distress. In bed and comfy, am awaiting report from my brother and sil who visit almost daily. Still haven't heard from pulmo, I'm assuming that he's talked to nh. When nh wants to transport her to hospital, they call brother who is financial poa (also he's a guy and 6'3".😃) Brother is still waffling about Hospice; I feel like I'm in Wonderland. We all know she's dying, but denial is a powerful and comforting defense. And then there is Youngest brother who lives 5 hours away and never answers emails. Except when he does and says " I have the utmost faith in what you guys are doing". We're pretty functional, , all things considered
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Don't wait for the meeting get Hospice in today or tomorrow. There is no reason the NH Dr can't order the morphine. They don't like doing it but tough sh*t she needs it.
Is she on oxygen. Personally and I emphasize personally as a retired hospice RN I would stop the antibiotics and any other meds that are not designed for pain relief anti anxiety. she can eat and drink whatever she wants or nothing. The anibiotics will just upset her stomach. If she gets restless make sure they check her bladder.
it's OK to put a catheter in at this stage unless she is distressed by that. Saves a lot of moving and changing. She could have at tube put in her chest which would allow the lung to re-expand but she sounds as though she is too close to passing for that. if the NH is unreliabel make sure you are there asking questions and she is getting enough medication. This is very hard and thoughts, prayers and hugs are comming your way.
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Is she in distress? If so, I hope they do bring it on. It would bring her some ease, which is all you can hope for a this point. Let us know what the pulmonologist says. Hopefully the meeting on Friday will be helpful. Waiting for the inevitable is hard. Deep breaths - take a walk... hugs
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thanks, CM and Emjo. I just want to scream "bring on the morphine already". Frustrating to say the least.
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Oh cripes.

You're doing everything right, I've nothing to add except a hug, and all good wishes for her comfort. Keep in touch xxx
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Hugs ba8alou - this may be the one more trip. Your assessment of and concern for her condition has been right on. I know it must be an agonizing journey for you and for her. Hope the meeting goes well. Meanwhile know that you are doing the right things. I hope it gives you a little comfort. My prayers are with you and your mum.
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NH called early this AM to say that mom's lung has collapsed; they are treating her with antibiotics. She also has the beginning of a small bedsore on her backside. I have a call into her pulmonologist to find out if there is more we should be doing; or if we should be calling hospice. We have a care planning meeting 10/10 at which the Hospice representative is supposed to attend.
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I had a bit of insight that I want to share. I worked myself into a lather the other day about something at the NH (did she had the chest xray, when did it happen, did the doctor get the film and not just the report) until I was on the verge of collapse. I took the weekend off last week from visiting Mom (it's a long drive, three hours round trip, takes mucho out of me).

I realized that getting bogged down in the details of her care is what psychologists call "displacement". You're upset about something, but you focus your concern onto something else to avoid looking at the thing that is ACTUALLY upsetting you. In my case, I'm upset that my mom has dementia, worsening CHF, has had pnuemonia almost constantly since January and is clearly getting frailer by the day. Is she activly dying? It's hard to tell. Her pulmonolgist said to me the other day (when I asked if we were at the point that we should call in Hospice) that he thought that we had one more emergency trip to the Hospital left and then we would see a really rapid decline. It was good of him to give a solid opnion, whether or not it was wrong. Since I've realized that I'm displacing all my angst onto the NH, I'm feeling much less angst-y. Just wanted to share.
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Blannie and Pam, thanks so much for your wise counsel. I think at this point we are in the exploration stage, but if I were on my own in this, I would be bleating for Hospice. My mom has differing levels of being for everyone. I've seen her brighten up for the aides, so that I wasn't really sure I was seeing the same person I was with minutes before. I think she's miserable but afraid to die. I don't want to force anything on her, but in this journey, every time we come up against a hard place, I've been able to have a hard conversation with her. "mom, I won't lie to you. the doctors say you're not dying I'll tell you when that's going to happen". So I guess at some point, I'll have to make my peace with telling her if we go to hospice. Ultimately, I think she''lll be fine. I so value all of you, more than you can know. Barbara
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ba8alou you are wise to meet with the hospice nurse before an event makes the decision inevitable. It is very important to choose your hospice very carefully if you are in an area where there is a choice. because the NH has their choice does not mean you have to use them. If you can, choose a not for profit hospice.
Just lost half my post which is very infuriating.
Meet will all the available hospices in your area before the care meeting to decide if the NH choice is the right one for you. She sounds as though she is appropriate for hospice care but you don't have to have them if you are happy with the care she is recieving. You can also change hospices or simply discharge Mom if you don't feel they are helping. You are free to come and go it is not a final choice. As far as continuing to tap the pleural effusions, if it distresses mom don't do it as long as she is not really breathless. often the same effect can be achieved with diuretics. As time goes on even if you tap she will retain fluid again, it is the nature of the disease. At that poinst she will be nearing the end and can be given liquid morphine which will mask the symptoms so she feels comfortable. Your SIL is right to question every recommendation. The question to ask is "What will happen if we don't do this and can we do it later if we change our minds?" The goal here is for Mom to be comfortable and not be stressed with unessesary tests. Just try and make any decisions during office hours so that the right personel are readily available. You don't have to have hospice at all. the NH is taking good care and you have the right to veto everything. If she was living at home I would definitely recommend signing up immediately because they do have a lot to offer. blessings to you all and guidence in making the best decision for Mom
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Excellent move on your part to have the RN at the meeting. Try to get some feedback on that agency, they are not all the same. We are lucky that Hospice Buffalo has some genuine angels among their staff. ((((hugs))))).
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So, I'm keeping this more as a log of my own emotions and thoughts than for anyone else. Mom had an xray which finally got sent to the pulmo doc (emails, phone calls, yes it was done, no it wasn't; drove me mad). So, no change in her pleural effusion. It's moderate. Mom has O2 ordered at night, but she is using it pretty much 24/7 these days, which upsets my SIL, because she thinks it means that mom is ACTUALLY out of breath or O2 sat is bad. Which it's not. Her sat is still close to 100% on room air. I think that mom can feel the pressure in her chest. It's fine that she uses the 02. Talked to the pulmo guy today. He said to have the NH watch for shortness of breath at rest, which would signal worsening of the effusion, meaning another thorocentisis. I asked him if we were in Hospice territory yet. He said, no, but another trip to the ER and hospitalization would probably cause a steep decline. So I've set up the next care meeting with SW, etc and she's kindly offered to have their preferred Hospice provider nurse at the meeting. I feel like I'm just trying to prep for the inevitable here. But in the same way that I wanted to pick a pediatrician BEFORE I had my first child, I want to meet the Hospice provider before they have my mom in their hands. I don't want to have to decide midjourney that I'm unhappy. Thanks for listening.
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Blannie, I'm still kicking myself for the pacemaker, but mom wanted it.
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Blannie, and everyone, last year when mom broke her hip, surgeon wanted her to come in to have stitches removed. I'm basically a good girl, I do what I'm told. My brother said, wtf, anyone can take out stitches! So whenever any doc asks for a followup visit these days, I ask what the upside is. Because transporting mom in an ambulet presents lots of opportunities for broken bones.
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Ba8alou I hear you on asking why things need to be done. I'm still kicking myself that my mom's heart doc (who I Iove) talked me into having an ultrasound of her heart. We know it's bad (atrial fib and narrowed coronary arteries). She's 94 and doing unbelievably well according to her doc's expectations. I don't think he learned anything new and it was a lot of work and effort to go through the process, not to count the $$. I should have said no. Sigh. Live and learn.
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captain: you are right on. 91 years old, quality of life is what needs to be weighed...keep them happy and comfortable.
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I took my mom to the pulmonologist today for followup from her recent hospitalization. I say "took" loosely because there was an ambulet and an aide involved. I showed up and asked questions. Very nice doc, treated my mom like she was actually in the room. At one point he suggested that we could go to the "walk in" x-ray place across the street for a quick chest film. A let a beat go by and said "I guess the ambulet could come back and we could take her over there and we could wait..." he agreed that the nh could do the x-ray this afternoon. I'm learning my lessons slowly from my sil, who always asks why things need to be done the way that's being suggested in the past, I would have broken my back wheeling mom across the highway. No more. Self preservation is my new mantra. Mom's pleural effusion, although moderately large, seems stable, and now that we have a relationship with this pulmonologist, we can get her into the office for an outpatient tap if she starts to fill up again.
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Thank everyone for your comments. Is Dr. Kavorkian still available. My mom is having a bad day today. I jokingly said maybe it's time to kick the bucket. She said she couldn't find it. Still has her sense of humor at 95. I so needed some mental help today and am getting it here.
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