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
No replies possible. Not with teeth this tightly clenched. Oh Barb, are they trying to drum up business and have her entire family admitted with apoplexy?
Social Worker called last week to apologize for the lack of communication. I wasn't having it. I told her that we just KEEP having this same conversation over and over. I want something to change.
Talked to the Ombudsman over the weekend. Yes, we have the right to be informed about med changes. This cut back on Lexapro is apparently about the increasing incidence of Serotonin Syndrome in the elderly who are often (and my mother is) on more than one antidepressant. The thing is, my mom is on palliative care. I would rather she not be agitated, even if the meds are going to put her at risk. REALLY; my brothers and I all agree about this.
I went to see mom yesterday; she's fine. When I went to fill her water pitcher, an OT appeared and was asking mom questions about her hand strength. I asked pleasantly what this was all about. The young woman said that nursing had asked for mom to be screened for OT. I asked why that was; she said she didn't know. Mom was a bit agitated about being asked questions (as she can't answer, being aphasic and all).
I emailed the powers that be last night and got a call from the head of rehab today.
My mother has stopped her "ambulation protocol". (They've been walking her up and down the hallways with a walker and gait belt since she stopped being able to walk, more than a year ago). When did mom stop walking? Rehab didn't know. She was evaluated for PT last week, and approved; nursing wanted her OT skills checked out as well.
As you can see, they are taking excellent care of my mom. My brothers and I just don't know anything about it.
[thinks: no sh1t Sherlock]
So they do that, and it becomes one of the criteria on the service quality inspection list, and each service user is dutifully supplied with a journal. Which you initial on each visit, and which otherwise gathers dust and tumbleweeds.
And if, every so often, you get a little bit excited about it and jump up and down with steam coming out of your ears and demand to know why this isn't being *done*, the reaction you get from the front line staff tends to be best described as - well it's not even dumb insolence. It's just dumb. As in "uh?"
It makes you want to shake them. And I will put money on it, Barb, that the person who told you that your mother had been seen by the dentist, at the time of his or her speaking, was failing to distinguish between a dentist and a dental hygienist. Hey! - it was someone who looked in her mouth, yeah? Not deceitful, certainly not abashed or covering up, just unbelievably, breathtakingly *thick*.
You sometimes think that they must have an entire training module devoted to "Disengaging The Brain (Your Own)."
The poor folks on Medicaid without loved ones involved in their care
I said, folks, that is Geriatrics 101, right? I'm not even in that field, and I know that.
Cold comfort to be right.
My mom's dosage of Lexapro was increased, and did the trick, when she thought she had leprosy. We tried redirection, taking her to docs, etc. Nothing but meds helped.
It may be more than poor communication if they have no procedure in place to monitor the effect of the dosage change on your mum and to take into account what you have tried to convey to them which is that your mum will people please and not show them how she is feeling. They need your input to properly assess her. This should be built in by now IMHO.
As I've pointed out to the senior staff, adminstration, social worker and front line nursing staff over and over again, my mother hides her emotions from "strangers". She is not going to get weepy and agitated for them She saves it up for us. She has ALWAYS been like this--a real people pleaser. So the ONLY way they are going to know if she's upset about MRSA, Leprosy, etc, is if we tell them. And I think we deserve to know that they've changed her meds. I looked back at my records and found that the day after the reduction was started, mom told my SIL that "something terrible" had occurred. It hadn't, but mom interpreted something ordinary as catastrophic.
She deserves better than that. If I'd know they'd reduced her meds, we all would have known that it was having a bad effect on her in one day.
This is all about lack of communication. And they don't seem to be getting any better at it than they were 3 1/2 years ago.
"while mom sees the dental hygienist every three months, she has not seen the dentist is over a year. I specifically requested this in early december, and was told she had been seen. "
This dishonesty/cover up really sticks in my craw. What else is being covered up?
Let us know how the pow wow goes.
In part, in large part in fact, is that the way we've set this care plan up is that my SIL spots the issues and because I am mom's HCP, I run around and try to get the issue fixed.
SOME of this stuff I would let slide (dental, for example). Psych meds, no, I am like a mama bear on my mother having some peace of mind. But part of me just wants people to do their jobs!
If I had let the ball drop on issues like these, even at a large public agency like the one I work for (where everyone thinks we just sit around eating bonbons all day), my head would have been handed to me by my boss.
Reminds me of when Daughter 2 was doing her best to get herself expelled from school, sigh. It wasn't until I howled "you'll find every other school just as bad! I've looked! I *promise* you!" that she seemed to accept the point that she was probably better off with the devils she knew. I'm not sure the Vice Principal found my argument very flattering, mind.
It also transpires rhat, while mom sees the dental hygienist every three months, she has not seen the dentist is over a year. I specificallyrequested this in early december, and was told she had been seen. Stay tuned.
I don't want to move mom. She is content where she is. Need to have a pow wow with brother and sil.
Half-baked implementation will screw up any strategy. Wretched fatheads is what they are!
Unfortunately there are wretched fatheads in the woodwork wherever you look. But I agree it's nice to have an escape plan.
Your mama has been through so much - hope if you decide to move her that it is an improvement
If you don't mind my asking, is mom still private pay at her NH?
The problem is the lack of notification. I've had this conversation with these folks at least 10 times in the past three years. It works for a bit, and then it doesn't.
Got an application for another, nearby, family owned NH. Just doing that made me feel better. I'm quite done with these folks.
Someone has Some Explaining to do, hm? Hope she's feeling calmer again very soon. Hugs.
Thanks so much to all of you for your support and feedback. I re-read the whole thread the other night. It's like molasses with occasional Mercury. It makes me so glad that mom is somewhere where folks with training are caring for her.
I know you're an early bird but I hope you got some rest last night and that the winter storms don't impede your travels this weekend
Prayers and hugs to you
Hope your mom is better
Mom's private caregiver brought us both the dang bug two weeks ago and I still can't shake it off
Mom still has congestion and a cough and didn't want to get out of her wheelchair last night so the dang staff at the hotel California left her in it with her head hanging low - I was just too tired myself to go put her to bed but I will tonight - we have a little rain today and I hope the afternoon caregiver can get her into bed for a cozy nap
You must be thinking of a fish called Wanda