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
Don't be fooled by a 21st century perspective. Poor little Anne of Cleves that everyone feels sorry for because Henry VIII was so rude about her ended up with a substantial divorce settlement, a comfortable independent home, the honorific of "the King's Sister" and the respect of an extremely ruthless court. She also got right away from the vile brothers who'd sent her to England in the first place, not to mention keeping her head. Canny woman. As 'Somebody' once said: "don't get mad. Get even."
Anne certainly did manage to at least survive being beheaded. I had read that Henry did "buy her off" after the realization that the marriage was not going to be as he expected. I had always thought that that might be to keep her silent and subordinate, but I was unaware that she was as fortunate as you write.
You obviously know your English history!
Mom's reaction was priceless; she said "how can that be?"
My mother had a basal cell carcinoma on the end of her nose. She opted for radiation. That wasn't so bad. Each procedure was short, but we had to go back for 12 treatments -- two a week. I was so glad when that was over. I decided if she got any more carcinomas, I would encourage her to go for the surgery instead. I would rather do one long day than 12 short ones.
Talked to MD at NH yesterday. She agrees that the topical treatment for the Basal Cell is fine. Also told me that the chest xray mom was supposed to have on 9/10 (that mom is SURE she had), didn't occur.
So new chest xray shows pneumonia and they called today, wanting to start her on intravenous antibiotics. I don't usually argue with sort of thing but asked if it was really necessary. APRN said she was thinking the same thing. So we are not doing antibiotics, in part because mom is completely asymptomatic. And I suspect that she will think an intravenous line is actually chemo. So we'll see what happens.
Fortunately, it's not like your mother's going to be able to lick it off her own face so maybe not much could go too badly wrong. Count to ten!
When mom was in the ER earlier this week, I could tell that not one soul there had been educated on dealing with a dementia patient. They over explained everything. They kept giving her choices, and doing all the things they would with someone in their right mind. It just made her more confused. Thankfully not distressed. Too many questions repeated when mom wouldn't answer. Hello - that's what I'm there for! I know it must feel wrong for them to not speak directly to the patient but to their guardian/POA. They also talked to her in a slow baby talk way, which is just a symptom of not being trained not to infantilize the dementia patient while trying to be kind.
I think the ER staff need some awareness of this, but may not encounter enough dementia patients to practice those skills.
With me keeping my cool, I know I am not putting my Dad into a panic. I do have to remind him that Mom had a head injury so she won't be herself. In fact he finds Mom's talking interesting and comical at times. Now he's wondering if Mom will give away any secrets while talking in her sleep :)
I'm knackered. I'm not going to do this once a week anymore. Just can't anymore. My brother told me a year ago "we've got the visiting thing covered" and they do They are 10 minutes away. I gotta stop torturing myself and thinking that any of this is making a difference. I make a difference by calling the docs, SW and DON and figuring that stuff out.
I listened to a scholarly programme on Radio 3 all about Hadyn and his legacy and protégés and so on, and it went into some depth about Beethoven's devotion to his teacher and tributes to him and all the rest of it. Very interesting. Then to close the programme, the presenter said, "we will now hear the final movement from the xth symphony by Hadyn's favourite pupil: Wolfgang Amadeus Mozart."
It's that "oh, gee, thanks" feeling. But you're right to take it as you are doing. Go and see her when it makes a difference to *you.*
About the mother/son thing, yes, I'm sure I light up like a Christmas tree when I see my son, and I'm sure it causes consternation to my (much more present ) daughters. I feel much better this morning. Those drives (I'm in Brooklyn, mom is in Connecticut ) are just taking a lot out of me.
Whine over!
In my situation playing the old games doesn't do me or her any good, in fact it enables her. Any contact has potential to enable. There are practical things that I need to do or find some to do for me. That leaves the strictly personal matter of how much I want to see my mother and what my sense of obligation to see her is. I would be fine never seeing her again as when I do see her I am in territory that is unsafe for me. I do, however, have a small sense of obligation which is getting smaller all the time as I wrestle with my own health issues. I used to visit her city 4 times a year, seeing her multiple times each visit. Can't do that anymore, so it has become largely a practical matter - maybe once or twice a year will work. We will see. I make no promises. Does she want more visits? Of course, she has always wanted more visits. I suppose they do have some "real" meaning. But, her loneliness is her issue, not mine.
Rambling with my stuff here - thx for the opportunity, babalou. You have made the right decision.
ff - sorry to hear about your mum, It was bound to happen eventually. I think you are wise to cut back. I wish I had done less sooner. I think my health would be better now
Sil also noticed she hasn't eaten any cookies this week, which is a very bad prognostic sign. They are going out to get mom rum raisin ice cream ; I've sent an email to the unit manager asking for the nurse - practioner and/or doctor to stop by tomorrow.
Those of you who know vascular dementia, is a steep sudden decline like this common, or has she had another stroke? ( NOT that we're going to the hospital to find out, if I can help it)