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
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.
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.
I said, folks, that is Geriatrics 101, right? I'm not even in that field, and I know that.
Cold comfort to be right.
The poor folks on Medicaid without loved ones involved in their care
[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)."
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.
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?
I'm trying to navigate my way into a "let go, let God" state of mind. Which I could probably do, left to my own devices. However....
My sister in law, who is our eyes and ears, as she visits mom several times a week, in the evening, notices the little things. Then I call up the facility, find out what is going on and what I find out is that, while they are taking good care of mom, they are not telling us about stuff.
sigh.......
Went to visit today; she was still in bed at 1.30PM, very sleepy, eating in slow motion. Drank the latte I brought her and ate most of the chocolate muffin. Her vitals have been checked and they are fine. Sent an email to the DON to ask for a UTI check and to let them know that we are concerned.
Bless you for bringing her a latte - do you suspect they let her sleep through breakfast and lunch ?
It seems so good that she ate and drank what you brought her. Keep watching out Barb. Tonight I started reading what you wrote 3 years ago, not knowing it was not today.
And I felt so bad about your Mom's troubles. But it was not the end 3 years ago. I encourage your journal here, keep it up!
Somethings up; I sent an email to the RN director on the unit and the SW; she was apparently weepy earlier in the week as well. There is something that troubles her, we don't know what it is. If she can get a few words out, she'll say to us "you know, you KNOW what it is!" Once, when I told her that I truly did NOT she said "don't put me through this!" She sometimes thinks she has MRSA or leprosy and wont' let us bring the great grandbabies to see her.
Ms. Madge, they hand fed her breakfast. She had eaten a good deal of her lunch when I got there, but in slo-mo. Very strange.
Mom was a very bad eater for 20 years but toward the end she stopped eating entirely. It sounds like your mother still has an appetite which maybe is a good sign she is not giving up.
Mom does seem to decline in the summer. I'm not sure if it's the heat ( she's in an air conditioned environment, but allergens, etc) or what, but there always seems to be a decline at this time of year. They are going to review her meds, monitor i/O and have the aprn check her again tomorrow. They say they are seeing significant cognitive decline.
This is so NOT what my mom wanted.
She's not really self-aware now, BB, it won't horrify her as the thought of it would have done years ago. Doesn't make it any less awful for you though. Hugs x
I explained that we all are trying to be team players here and are trying to provide useful information to the facility to further mom's care. NOT trying to play a game of "gotcha".
I got a very thougthful email from her yesterday; they've been keeping track of mom's input/output and are finding that she should be drinking more; and that when she stays in bed, she hardly drinks anything. She asked if I thought this was a true decline or simply infection/dehydration.
I gave her a brief hx: graduated summa cum laude from college at 82, suddenly at 88 presenting with terrible anxiety which led us to cognitive testing, which revealed a stroke and dx of Mild Cog Decline BEFORE her "big" stroke in 2013. She seemed grateful for the background and I also pointed out that these declines (which always herald "the new normal" always seem to occur at this time of year, when the weather turns warm. Allergy related? Dehydration?
No clue. Just feeling happy that I was able to give someone information who appeared to be listening.
Head of rehab emailed today; they evaluated mom for self feeding today and will be applying to Medicare for some sessions to improve mom's utensil use.
Good news all around.
Thinking of you BB
Went up to see her yesterday. Naturally, this was the two days that I'd arranged to have a rare overnight with my 5 yo grandson, but I took him with me and We stopped in twice.
Mom was out both times. Doesn't look like she's in pain.
Talked to NH doc today who confirmed that we don't need to do followup with an ortho (the ER said to my brother " of course you'll followup with an orthopedist". Yeah, right.
Doctor is concerned because she is getting congested from being in bed so PT will attempt to get her up today.
Doctor (NH director, who is lovely) emphasized that the aim is comfort.
Thanks for listening. Dating this 8/2017
SIL upset at mom's facial bruising, discharge from two black eyes. Wants an xray of mom's face. Said mom does seem to want to talk or think.
(INSERT SILENT SCREAM HERE).
Okay, so if we do an xray of her face and there is a broken bone, are we going to rush her into surgery? (no).
Why should mom talk or think? She's got Vascular dementia and aphasia. She's not in pain.
Why do I keep having thus conversation?
I was following this thread when you were Babalou but lost track of this thread. I had no idea your journey is so challenging and ongoing. I found it after you mentioned it on the Whine Thread.
I just don't know what to say...
I hope you and your Mom find peace soon.
Those words just don't seem to cover it. I just don't what else to say.
Hey, I'm not a hands on caregiver. My mom is getting decent care in a NH. She's docile and only occasionally agitated. She saw her third greatgrandbaby for the first time on Monday!
She's 94 and has had a good and long life. I don't want to subject her to any more poking and twisting than we have to.
Being the troubleshooter with the NH is enough to send one screaming into the night!
Take care of yourself.