The other day, after posting a "rant", I realized that I need a place to write down what is going on. So I'm going to start here. I'm not asking for advice, but all is welcome, without push back.
My mom is 91. She's had a good long life. Had a stroke in June 2013. Was in acute rehab for 2 weeks, then sub acute for 4 more weeks. She developed vascular dementia, i.e., she knows us all, knows the day, date, etc, but thinks that there is a union trying to take over the facility she's in, that there are floods all the time and that the Communists are about to take over (she watches a lot of Fox News.....). We tried her in a lovely AL facility, but she was paranoid and couldn't remember to push the button when she needed help; she fell and we moved her to memory care. She didn't do well there and we added a full time aide. She fell THERE (with two aides in the room!) and ended up with a broken hip. Anyway, post surgery for that (September 2013) we admitted her to a lovely NH. She's done really well there, gained weight, become very mobile with a walker. Great therapists (PT is a sadist, but I think they all are, she's pushed my mom to do stuff none of us would have expected!). Mom was in the hospital for pneumonia in Januray, recovered well and was back up and walking in a few weeks. Fell in June; discovered in hospital that her heart rate was quite low; we ended up doing a pacemaker. Back on her feet in a few weeks. Mom started feeling out of breath in NH a week or so after pacemaker placement. NH dxed pneumonia. Several rounds of antibiotics; chest xrays, etc. We made an appointment to see a pulmonologist, because mom has had pleural effusions in the past. Before appointment happened, she fell in NH, ER via ambulance; blood tests were all out of whack. Long story short, they tapped her chest and the little pocket of bacteria in the bottom of her lung blossomed and sent her into sepsis. She made it through that, is back in NH, after 5 days of being bedbound. No fractures, but she's still in pain. On tramadol. Talked to her this afternoon after second PT session. She said "I'm not in pain, but my legs don't work". Okay, NOT in pain is huge. At least they've got pain meds on a schedule and not PRN, because if you ask her if she's in pain, she says "no". But then she is if she moves.
My POA brother is in Europe for ten days; younger brother is supposed to get back from vacation this evening. Hey, I'm not a hands on caregiver by any stretch, but I'm trying to take care of my mom the best I can. Trying to figure out the next steps. She's got CHF, doesn't seem to be progressing anywhere! Dementia is not of the 'mean" kind, she's just confused about the facts most of the time (asked me the other day if youngest brother had 3 or 4 kids, she was concerned that she couldn't recall 4th kid). NH says not time for Hospice. Hospital says that we are not at palliative care point yet.
Frankly, if this were one of my dogs or cats, I would have put them out of their misery this week. There. I really needed to say that. I don't think that there is any redemption in physical suffering
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.
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.
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.
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.
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.
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.
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
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.
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)))))
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.