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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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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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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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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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(((((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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oops -you wrote about what "we" tell mum, so I gather it will be a family effort.
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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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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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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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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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Ba8alou, yes, you go and advocate for your mom. This is not the time to be skimping on pain relievers. Thanks for the updates.
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Hope you managed to get her settled (and the staff sorted out once and for all - do they not notice that their patient is in pain, or what? Aren't they looking?). Hard times. Big hug.
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So I dropped husband at work in Queens the way I do every morning and headed to Connecticut. Got here to the nh just after 7 am. Checked on pain meds. She's on scheduled Tramadol 9, 4 and 9. She asked for one at 2.45, so she was clearly in pain then. They took an x-ray of her hand, negative for fracture. It's arthritis. If an elderly patient has pain not covered by usual pain meds, wouldn't you check on them before their next scheduled dose? Don't you notice that they're weeping? Can I trust these folks with what will surely be her increasing dyspnea? Do we move her?
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Yes YOU have to keep on top of this SIL should have insisted on pain relief before she left Mom. Are both hands swollen? If it is one, is it red and hot? Does or did she have an IV in that arm. if due to IV, antibiotics are usually given but in this case probably not but enough pain meds to ease the pain. Elevate it on a pillow and ice the area.
Even with hospice in the picture when a patient is in a facility the staff have no discretion about the amount of meds that are given they have to follow the orders. They can contact the Dr and ask for an increase in amount or decrease the time between doses, so don't take "I can't give it fo another 20 minutes" for an answer go to the desk and stand there and make them call the Dr. if not go find the nursing supervisor. Don't loose it but keep insisting. If you do have hospice call their nurse to come in if you are not getting what you need.
Time to take action not lie awake worrying. Can you take time off work?

Just a few things about pain medication in general not necessarily for the dying. It can be given by mouth, IV, injection, and by rectum. rectally takes the longest to work but is good when someone is unconscious and getting a long acting med say every 12 hours or something like tylenol suppositories for a fever Any medication that contains tylenol can not be greatly increased becaus the tylenol damages kidneys so something different has to be given if it is for pain alone. By mouth it usually takes at least half an hour to work, the exception being liquid morphine which is can be absorbed direct in the mouth and you may see sesults in as little as 15 - 20 minutes. Intra muscular injection takes up to half an hour as long as the circulation is still good. In the dying as the body shuts down this may not be a good route. The IV route is usually very fast and works in about 5-10 minutes but that is assuming the heart is still pumping strongly. Hospice nurses prefer the liqid morphine because the blood supply to the mouth is so good and the med is quickly absorbed if it is dripped slowly into the cheek even if the patient can no longer swallow or is unconscious. Nurses in acute facilities and nursing homes are often scared to use the massive doses that are often prescribed for patients in the home because they have no experience of managing the dying the hospice way. As long as the dose is increased until enough is given to ease the pain the patient is not being killed which is most peoples fear. Once they are comfortable they may be able to prepare to leave this life rather than having to concentrate on fighting the pain. Pain management has become a very important sub specialty in recent years and requires a lot of intensive training.
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Go for the luiquid morphine both for the pain and dyspnea. Stamp your feet till it is done Loose the tramadol it contains tylenol. How is the pain supposed to be managed from 9pm to 9am! Glad yoou are ther mom needs you.
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Oh, sil insisted! I'm here now waiting for 10 am care meeting. Thanks for the information! She reportedly slept through the night.
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ba8alou, having mom in a nursing home changes the dynamic of hospice from THEIR standpoint. From your standpoint? My advice to you is to do all your communicating re pain relief through the hospice nurse. Period.

Mom was only on hospice for a week, you may remember. But during that time, that nurse was our best friend. Screw the NH staff. The hospice nurse is the one who can get things done. And what YOU want done should be communicated directly to her via phone.

My personal position would be that the hospice staff has full responsibility for mom's medical care at this point. The NH staff is superfluous. THEIR value lies in reporting her symptoms to you. Period.

I may sound like a Little Miss Know-It-All, but I can tell you that that's how I would handle it in your position. Nursing home keeps her clean and safe and reports any discomfort to YOU. Then YOU contact the hospice nurse and demand relief for mom. I believe they have discretion when it comes to upping pain relievers to a certain point. But, much more importantly, they've got the hospice doctor's ear.

My personal opinion is that, if you allow it, the waters get muddied. Hospice is responsible for her medical care and for keeping her comfortable. Advocate to THEM for your mom. Screw the NH staff.
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Maggie thank you for the middle of the night hug and for your usual sage and pithy advice!
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As I said at the outset, writing this stuff down is for MY mental health. But for those of you who need a laugh tonight, here it is.

We convened a huge care meeting this am. Mom is still making progress in pt, is starting to take a few steps with the walker. That is huge. O2 sat is still mostly okay on room air at rest. But she mostly wears the O2 24/7 due to subjective feeling that she might get out of breath. Told the assembled team about our concerns about pain relief, lack of communication. And I mentioned mom's collapsed lung. Utter silence in the room. "Who told you that? Your mom doesn't have a collapsed lung", says the NP. What? Who told me that? Mom's nurse, at 7 am Monday morning. Confirmed by me with the day nurse two hours later. I was instructed, from the get go that my point of contact for Mom's medical care should be mom's nurse of the day. Which I've been doing when I have questions. And they are the ones who call me with mom's medical issues. To further complicate matters, the aprn has never communicated directly with the pulmonologist and vice versa. So every seems to be relying on me, the non medical professional to relay information. And since I'm being given garbage as information, that's what I'm conveying to the doc. I looked at the director of social work and asked her very quietly why my next phone call shouldn't be to the joint commision and the ombudsman. (THANK YOU PAM FOR TEACHING ME THOSE WORDS). so she says she's going to the corporate people with this, and we might as well know that the DON is out on medical leave for several months. From here on in, I'm supposed to get an email detailing mom's condition every am from social work, after morning report. So, Yay, mom's not dying! Yet. But what a stinking mess. And the other top rated hone in the area has not returned my brother's phone calls. Further questions, Hospice nurse says putting mom on Hospice would mean discontinuing the lidocaine pain patches, ot pt, chest x-rays and blood tests. Is this accurate? Today was not the day to argue about this stuff. But if any of you have thoughts on those last items, please let me know. I can't tell you how tired I am. I had three babies in 4 1/2 years and that was a walk in the park compared to this.
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There is no reason to discontinue the lidocain pain patches. Patients can also have pt and ot . Retaining functionality is part of onging quality of life so no reason to stop that especially as she is in a facility and can recieve it there. Continuing blood tests would depend on the reason for doing it. If she is taking a blood thiner for example then those levels will need to be continued. Chest x-rays may be questionable if they are not going to tap her effusion. They can tell the state of her lungs largely by using a stethoscope so an x-ray would be only necessary to establish a diagnosis if it is going to be treated. I think you need to weigh the benefits of staying out of hospice in this case. If she was at home .it is normal for hospice not to do diagnostic tests that would be necessary for a diagnosis that would need treatment commonly viewed as curative., but the attitude demonstrated today would make me hesitate. However it is reasonable to use an x-ray to confirm a broken bone so it can be stabilized thus contributing to the patient.s comfort. An x-ray and treatment for a bunion would not be considered. surgery and chemotherapy would not be done while in hospice but radiotherapy is sometimes done to shrink a tumor and relieve pain. There is no reason not to have something treated that you feel would be good for your loved one and you can do this by leaving hospice and be readmitted following the treatment. hospice can not refuse to allow this.
When you are more rested talk to Mom's Dr probably her pulmonologist to discuss what is essential for Mom's comfort and whether this can be provided in or out of hospice. Is there anyone in your family or a friend who has medical training who can help you sort this all out. We can give advice here but we are not on the scene and part of the discussions. There are always variations on any medical care so making blanket statement is not always helpful. Whoever is the POA does have the right to recieve copies of Mom's medical record so you can read for yourself just what has been written. Try and have a good rest over the weekend and rethink everything on Monday as long as Mom remains stable and comfortable. Blessings
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I would just like to congratulate you on refraining from slapping anyone this morning. The news that the Director of Nursing has flaked out and gone off for a protracted lie-down could explain a lot about the pain relief and reporting shambles. Question: has it gone to pot since this person went, or was the job so impossible that s/he broke down?

The fact that the problem is being taken to the top would decide me against moving her at this point; but any more of it and you should feel free to raise Cain.

And what happens to little old ladies who don't have informed and concerned relatives on hand, one has to wonder? On second thoughts, let's not.

Hope you get some rest now, hugs.
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Thanks for your support, CM. I feel like maybe she'd get better care if I stopped trying to "manage" and ask questions. Do you know that the nurses in the NH report to DON and that the doctor and nurse practitioner have no supervisory responsibility for them? The only person in the room today who seemed to have the brains to look at the computer where the Clinical notes are recorded was the Hospice Nurse. And we don't get to have her on mom's team. Yet. Yes, very seriously considering a move. Really don't want to do that.
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ba8alou - I am speechless... What a stinking mess, indeed. I am not surprised you are tired. Their errors have nothing to do with you asking questions. Veronica has good advice re meds, hospice etc. and cm's points about not moving your mum till things are dealt with at the top and what happens to people who do not have family support are great.

It does not seem right that the system is relying on you to convey medical information - not right at all.

It is one thing if one nurse made an error e.g. listened to your mum's lungs and thought one was collapsed and passed that on to the next nurse and it did not go further, but the lines of communication in general sound very poor and badly in need of being sorted out. So there is a problem with that nurse's skills, with communication with you and communication between the professionals. Or perhaps that nurse mistook your mum for someone else. It has happened. Either way, I think you deserve an apology and assurance that it will not happen again. The daily reporting sounds like a partial solution. Sounds to me that they need to revisit their lines of communication.

Meanwhile a trip to the other nursing home, if they are not answering calls, may be in order, though, that they will not answer calls does not bode well to me. You don't want to go out of the frying pan into the fire.

This really is horrible and an added stress you do not need. (((((hugs)))))
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It is common practice for nurses to report to a supervisor. they should however report any changes in a patients condition to the Dr, PA or FNP whoever is managing the patient. Medical personel issue orders order tests, treatment etc for the nurses to follow. I am not surprised the hospice nurse was the only one looking at the records as she is not involved in the daily care and only can find out what is happening by reading what the NH staff has written. hospice nurse can make suggestions and request medications etc but really has no power in the NH setting. In a hospice inpatient facility it is a different situation and the hospice nurses there call the shots and make requests to the hospice medical director.
be very careful about moving your mother, she may not recieve any better treatment somewhere else and the staff may be very wary of relatives and withold information because they will see you as critical so will not be as willing to share. Try and sort out the situation where mom is rather than subjecting her to another move where she will have to get used to new people and surroundings. do not worry too much about whether or not Mom has a collapsed lung because you have already decided you are not going to give permission for another tap. Focus on the important stuff like the pain relief. Blessings.
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babalou, I am so proud of you for brandishing the weapons "joint commission" and "ombudsman". I would have like to see their eyebrows fly off their forehead when you said that. ROFL!
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PAM, I'M so pleased to have learned from you.! I just faxed a letter to the pulmo doc, ask I'm him to talk to MEDICAL staff at the NH, so that we the family can get an accurate assessment of what to do. I'm afraid that by reporting collapsed lung to the doc, I made it sound like she's at death's door, which she is not. The only thing that everyone in the romantic agreed upon was that Mom is not a candidate for hospice. Meanwhile, back in room 108, Mom, who has always been super compliant, is now apparently forgetting that she's not allowed to do transfers herself. Her wheelchair is alarmed, so they are able to get to her before she falls...so far. I'm imagining that she will fall, we'll approve taking her to the hospital and something else dreadful will happen, which will either cause death or the steep decline that the doc predicted a few weeks ago. Many thanks to you all for taking this journey with me. Such comfort, I just can't tell you!
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Ohm and we are upping both her Klonopin and pain meds.
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Good something positive at last. hope she does not fall. is there an alarm on her bed too/
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deep breaths, ba8alou, and see if you can curb your imagination. She is declining and that is inevitable. You cannot prevent that, or all of the many things that may happen. Nor is it your fault if they do happen. I know it is a waiting game to a degree, but try to live in the present. She is being cared for, and receiving appropriate meds, for pain and so on. She is as safe as she can be and you are doing all that you can to see to that. You may feel foolish about ringing the alarm bell re the "collapsed" lung but that was not your doing - you simply reported what you had been told by a presumably trusted professional. Do something good for you now.
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Yes bed is alarmed. Just sent hubby off to see Fleetwood Mac, his dream band. Yes, CM, I will try to stop predicting the future :-)
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