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
Will you be making the round trip again today?
I'm just checking in to see what's the latest. Keeping vigil with you along with the other AC posters. Take care.
While I'm rambling, my brother told me that in the ER the other night, when they were splinting mom's arm, one of the docs said, "oh, and we moved her watch and jewelry to her right arm". My brother looked at him and said "jewelry?" Yes, some sort of bracelet, the doc said.
"You mean her MedicAlert bracelet?" (the one with all her med conditions, etc.)
Well, yes. The one they didn't look at.
A couple of years back, my husband got taken to the local ER; as I was telling the ER nurse all of HIS medical conditions and meds, the nurse looked down sternly at my mostly passed out hubby. "Mr. S", she said, "you really should be wearing a MedicAlert". Before I could explode, he mutely raised his right arm with the clearly marked bracelet on his wrist.
Oh. Well......yes, like that.
I was so glad that I was able to talk to brother at work yesterday; I usually get both of them on the phone and my sil is built very differently from the way we are. When her dad was dying of a dozen different ailements, her younger brother was jumping up and down on the chair in the hospital room screaming "fight it, Poppi, fight it" (I'm not exaggerating; they really resist dying, these folks.)
I pointed out to my brother that at the NH, mom is surrounded by folks who love her; everyone in the place stopped by yesterday, every aide, nurse, Father, two nuns, just to check in. When I mentioned to her nurse and the APRN that we wouldn't want to send mom to the hospital for the pneumonia, they looked at me like I had three heads and the RN murmured, "no hospital, Barbara, no hospital". I'm frankly of the opinion that the fall that she suffered was far less traumatic that the two way ride to the ER in the ambulance, and the experience of being in the ER and having tests, questions, etc.
Thanks for the good thoughts, Countrymouse; as you say, this is will come out as it's supposed to. b
Poor mother. But it sounds as though they're doing a good job of keeping her comfortable and not frightened. Hoping for the best outcome for her, whichever way that may go.
Hope the drive home wasn't too exhausting
Make sure you get plenty of downtime for yourself although I know that's hard to do in a situation like this.
She looks totally miserable, but is still able to eat lemon ice and take drips of juice.
Talked to my brother earlier, glad I did. He was thinking that mom would be more comfortable in the hospital (???????)
We talked it through and he thinks that letting her be is a good thing. He said, " you know, if SIL were involved in this discussion, she'd be arguing for the hospital " ( i know, I know. He also told me that the smiles that they've been reporting to me are a figment of SIL'S imagination.
Just oy. Well see what happens. Mom has fought through several falls, pneumonia. What happens depends on her will to pull through this.
I will start praying for God's will for your Mom, and that there will be no more suffering, no more pain, and no more tears, dear one.
I'll be thinking about you and hoping that the visit brings some sense of resolution, or movement to it, for you and your family.
You have friends in all time zones here
Let us know how mom is after your visit tomorrow
Hugs
If I were managing this alone, I would have turned down the pacemaker two years ago. My mother, in her early old age, would have been horrified to be kept alive in this condition. But I don't make these decisions myself.
And my brother is certainly correct; at the time that mom's heart started to fail, she was able to express her opinion and it was "yes, I want the pacemaker".
This time, I don't think she's got the capacity to chose one way of the other and we ARE going to have to make the call about what to treat.
Thanks for listening to my ramblings. It really helps to write this stuff out.
I'll be up there tomorrow to see what there is to see.
Yes, I've heard pneumonia called "the old people's friend".
These decisions don't fall on me entirely; my two brothers and I make these decisions jointly. Thanks for all of your support!
I am for comfort care at end of life.
Sorry that she is declining, and these hard decisions fall to you.
As to pneumonia, in my experience the presentation has been one of coughing, lots of congestion, weakness, debilitation and general decline. We go through pneumonia generally a few times per year. The last two times have included sepsis, which scared me as I had always thought of it as being fast moving and frequently terminal, especially with older people and co-morbidities.
It was also complicated because a donkey's posterior of an internist and a similar anatomical resident were obnoxiously abrupt, rude, and totally unprofessional in advising my father that he shouldn't consider resuscitation in the event of cardiac failure, and further they would be cracking his chest in order to do that. In their infinite wisdom, they both advised that he had already "lived long enough," "is 98" and had a good life (how they perceived that I don't know).
I tried to replace them but they refused and challenged my efforts. I still plan to write a complaint letter to the hospital; they were both totally unprofessional.
I raise the issue b/c of the attitude by some physicians that it's just time to let go - don't expect them to want to do CPR on a 98 (almost 99) year old person. So we didn't get the treatment we would have with a younger person. And that's a consideration when deciding how to proceed.
I've been thinking about pneumonia and if there's anything I could share in terms of your mother, and I guess I'd have to say it would depend if it's in both lung lobes, how much oxygen has to be turned up to stabilize her breathing (8 liters is as far as we've gone and that's kind of "freaked me out"), whether or not the pneumonia and/or sepsis can be resolved, and whether or not oxygen weaning will be present in post-pneumonia recovery.
I wonder if the next bout will be severe enough to require 10 liter flows of oxygen, and what the prognosis would be at that time.
The weaning is I think critical, because being on 6 or 8 liters of oxygen significantly compromises mobility. That mobility compromise drastically changes one's daily outlook.
When on an 8 litre flow rate at home, and going out for doctor or other trips, the little portable concentrators can't be used b/c they don't have the capacity for liter flow that high. E-tanks have to be used; they're more klutzy. And even then, I've been advised by the DME supplier that an E-tank which normally lasts 6 hours will only last about 2 (I don't remember specifically) hours. I began taking 2 tanks, one primary, one for switching in the event of longer trip duration, and one as backup in case one of the others failed.
I had to create a special carrying area, braced and cushioned (even though the tanks aren't delicate) for the tanks in the trunk of my car. Add the rollator, extra cannulas in case one or more failed, and the back seat of my car filled up as well. I could see hunkering down at home becoming a pattern. So did my father.
Plus hauling the equipment aggravated a back injury. This changed my outlook on trips, even short ones, and I really began to dread them.
This also changes travel, movement, flexibility and freedom issues. You need 2 E tanks just to go to a doctor's office, one as backup in case something happens to the first (which it did to me). Everything becomes so complex on a higher level, especially if oxygen weaning isn't part of the rehab protocol.
At that point, frustration really sets in, and just the basics of breathing become more complex.
I think that would be a time to evaluate options. Lessening value to life can come from co-morbidities, and disasters like cancer, but it can also come from complex challenges just to getting through a day without dragging tubes around, tripping over them and worrying about falling, running out of oxygen if the car breaks down or is in an accident, and more.
I could see how it changed my father's and my outlook. And it wasn't at all positive.
Let us know how she is.
About treating pneumonia. Had some time to think about that. We won't send her to the hospital ( Heck, i wouldn't have sent her to the hospital after this fall, would have asked them to x-ray wrists with portable and ordered splints in house. Going to the hospital via ambulance is a big part of the trauma now). The last bout of pneumonia took two rounds of antibiotics to cure, one via IV. But she recovered.