I think this is the beginning of the end.

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I think this is the beginning of the end.

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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

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C Countrymouse Oct 2014 · Answer 1 · 2014-10-11T19:51:01.000-0400

OH WOW CAN I GO TOO...???

Emjo I never know which way to jump on the not answering the phone point. Angel: they're too busy looking after their current residents to devote time to sales. Devil: they're wildly understaffed and it shows a poor attitude to customer service.
It all turns on what happens when they finally do get round to returning your call, I suppose - they can put it all right by apologising and having a good reason. Otherwise...

B BarbBrooklyn Oct 2014 · Answer 2 · 2014-10-12T17:15:42.000-0400

As always, no need for anyone to respond to my rants here. I've decided that one of the things I MUST do, in addition to going to work each day, is that I have to find things to do on the weekend that refresh and uplift me. But that don't get planned too far in advance, because "something" could happen. So I got my husband a ticket to a fabulous concert last night. We took off for the wilds of NJ to pick apples; we're going to a concert next Saturday night (our regular subscription series, means sort of racing back from Mom's but worth it). I have to stop thinking that I am waiting around for a phone call to race to her bedside. You know, back in the day, when HER mom was dying, she'd go to the hospital every day (back in the 70's, when people stayed in the hospital for months if they were ill; my grandmother had gangrene). One weekend day, my dad convinced her to come out for a ride in the countryside, and of course, that's when my grandma died. Since then (or maybe before then), I've never been a fan of hanging about the bedside of the dying patient if they are in care. Every time I say goodbye to my mom, I'm aware of the fact that it might be the last time I see her. I think that she is aware of the same thing. But, just as she soldiered on, taking whatever college class was offered on Tuesday mornings when my dad was dying, I'm going to have to do something every Saturday or Sunday afternoon to take my mind off the inevitability of her decline. She set a good example for me in this, and I'm going to follow through on it.

B BarbBrooklyn Oct 2014 · Answer 3 · 2014-10-13T16:48:00.000-0400

New issue; SIL visited with Mom on Friday and said; How nice, it's Friday, on Friday nights you get your shower!" (Mom loves bathing; my whole childhood, she took a shower every AM AND a bath every night). So my sister in law was shocked when Mom said, "no, I can't have showers any more, because I can't stand". What? Have no idea where this came from, call the NH today, indeed she did NOT have a shower on Friday, but no reason noted. Asked Ass't DON (ps, see above issues, I'm now being treated like royalty when I call; calls are put right through to whomever; Pam, that Joint Commision Language really does wonders) to investigate and see if staff can't cajole mom into understanding that she can sit in a shower chair. I'm wondering if she's been standing for showers this past year, I can't imagine that. She came into this facility post surg from a broken hip. I'm wondering if this is a new stage of her vasc. dementia, or something she overheard (she's big on misinterpretation and confabulations). Anyway, it still feels like we're in a Twilight Zone episode, but given the new responsiveness of the facility, not one in which I get eaten by aliens in the end.

B BarbBrooklyn Oct 2014 · Answer 4 · 2014-10-14T18:24:40.000-0400

According to my now daily Email report from the Social Worker, Mom had a shower with the shower chair last night (they've always showered her in the chair, who KNOWS what's going on in that poor brain of hers). They've doubled pain meds and anxiety meds. Before you yell at me, she's been on a sub-pediatric dose of Klonopin. They upped the Tramadol to cover her arthritis and back pain. We can always cut it back. The pulmonologist spoke to the APRN today and his phone message says "we're all on the same page with your mom's care", meaning that we're not treating this iteration of the pleural effusion. If it becomes more bothersome and symptomatic, we'll cross that bridge down the lane. So right now, everything is as good as it can be right now; my poor husband, when he says "that's great", I burst into tears and say yes, it's just great that my mom is dying. Poor man. But I feel less guilty having sent him to see Fleetwood Mac the other night in a really nice seat. Thanks for listening

P pamstegma Oct 2014 · Answer 5 · 2014-10-14T21:10:53.000-0400

Good show babalou. Give yourself a trophy, maybe the little gold one that looks like the back end of a donkey, because you reined in the jackaxxes.

B BarbBrooklyn Oct 2014 · Answer 6 · 2014-10-14T21:39:16.000-0400

With your help, Pam, and that of everyone else here! There is such power in community! Of course, I yelled at my husband because HE wanted a trophy for having done HIS laundry. But that is another story. One day at a time people.

O Operator Oct 2014 · Answer 7 · 2014-10-14T22:01:32.000-0400

Wow I feel so ashamed for even complaining about my life! I hope things eventually become more better for you and your family sending lots of love stay strong and positive!

C Countrymouse Oct 2014 · Answer 8 · 2014-10-15T08:14:32.000-0400

Ugh, the laundry heroics, I've nearly bitten through my lip holding back when that kind of thing comes up. "I shall alert the media." "Well I think the Nobel Committee is still taking nominations…" or even just "Gosh well done darling!!!"

How *are* you supposed to respond positively without sounding sarcastic?

B BarbBrooklyn Oct 2014 · Answer 9 · 2014-10-16T20:52:48.000-0400

Overwhelm, kudos to you, I could never do the hands on caregiving! I visited Mom today. She's still enjoying stories about "Smudge", my grandson. She struggles to get out a few words. I give her neck massages. So sad.

T TheBlackDogMina Oct 2014 · Answer 10 · 2014-10-16T22:52:32.000-0400

ba8alou.....god bless you for saying some of the things we all ask ourselves (silently) but don't vocalize (or dare to post).....and also for your unremitting honesty, bluntness and lucidity in facing and sharing these challenges....you call them "rants", I call them "incredible life lessons"....yet to come, for me...but after a totally hellish 12+ months, not too terribly far off.....thanks and blessings to you and yours.....

A anonymous158299 Oct 2014 · Answer 11 · 2014-10-16T23:21:29.000-0400

countrymouse ,
youd love the way i operate . more like ; " i ran some clothes today . the ones in the dryer are done but theres still some in the washer . how was your day ? im gonna go make chilidogs " .

B BarbBrooklyn Oct 2014 · Answer 12 · 2014-10-21T21:00:38.000-0400

It's been quite peaceful the last few days. I get emails from the social worker, get callbacks from the assistant DON when I call. Mom is stable and comfortable. The increased pain and anxiety meds seem to be doing their job. I'm getting better at not feeling like we're in crisis mode at all times. Thank you all so much for your support. And no, youngest brother has not yet shown up. Did I mention that he's a rocket scientist? Like for real, an aeronautical engineer? Sigh.

C Countrymouse Oct 2014 · Answer 13 · 2014-10-22T05:48:11.000-0400

Maybe that's why he can't figure this one out - because nothing could be that simple???

B BarbBrooklyn Oct 2014 · Answer 14 · 2014-10-22T06:53:00.000-0400

CM, brilliant as usual! He can't figure out his kids either! That's really a comfort, knowing that there are others out there who can help me figuure this stuff out. Thanks.

C Countrymouse Oct 2014 · Answer 15 · 2014-10-22T08:30:38.000-0400

Wish I could say the same about my brother (materials scientist) - but the sad truth is he's a grumpy bugger with his mother's jaundiced view of humanity and belief in nothing besides a counsel of despair. They see you smiling and they wonder what's wrong. It's very wearing.

B BarbBrooklyn Oct 2014 · Answer 16 · 2014-10-22T08:36:34.000-0400

My brother in law is like that, very much like his Mom was; the world was out to get you and screw you in any way possible. Yes, toxic.

B BarbBrooklyn Oct 2014 · Answer 17 · 2014-10-27T07:22:32.000-0400

Oy, the Never-ending Dentist story. So, all summer, we've been trying to get Mom seen by the dentist. Her teeth were turning grey (turned out to be from all the antibiotics that she's been on for pneumonia) and her oral hygeine leaves something to be desired. So since May, we've been asking for her to be seen by the dentist and hygeinist. There is also the matter of Mom's partial no longer fitting, so she was all hot to get a new one made. This is in May, mind you. Phone calls, pleading, begging, crying. The dentist would come and would end up not seeing her (we were told); mom was in the hospital once when he was there. finally, my brother went over and sat in the adminstrator's office until she called the dental service and arranged to have the hygeinist come the next day.

Lo and behold, on Friday, my brother (who is POA) gets a letter from the dentist..."I had the pleasure of seeing your mother on July 8th...." with a proposed care plan for partial dentures. I went back through my emails and discovered that Mom had said to me "the man who runs the workers came to watch me eat". I asked the Social Worker via email if that was the dentist and she said no, the dentist had not seen Mom. You really can't make this stuff up. So here it is October, three months after the dental visit (and I have it noted in her chart that when the dentist comes, please call daughter with MPOA to answer questions, etc. BECAUSE MY MOTHER HAS DEMENTIA! Hello!? The notes on the dental chart (which I got to see simply by asking my mother's nurse "did anyone see mom on July 8th?") shows that "patient is confused". Well, yeah. This lovely people call my brother and me for the most inconsequential stuff ("your mother's weight is 107 pounds" "what did she weigh last week?" "107.2 pounds".) But not when the dentist shows up and proposes a $3000 denture job. You really just have to laugh! Thanks for listening.

C Countrymouse Oct 2014 · Answer 18 · 2014-10-27T09:19:05.000-0400

Ba8alou… [groan and mime hanging myself].

There is a famous, possibly mythical, end of term report from the Royal Military Academy at Sandhurst which reads: "his men will follow him anywhere, if only out of curiosity."

I know how the men feel. What, and in what bewildering way, are they going to get wrong next?

B BarbBrooklyn Oct 2014 · Answer 19 · 2014-10-27T10:39:30.000-0400

Thank you for that, CM! Brilliant as usual. The more sobering information is that on Sunday when my brother and SIL visited, she didn't recall that I'd been there the day before. Refer to the title of my discussion. The dentist-issue provides the comic relief.

B BarbBrooklyn Oct 2014 · Answer 20 · 2014-10-27T18:38:18.000-0400

so, the question running around my mind right now (aside from the dentures, which I'm not paying any mind to) is, my mom is concerned/worried/upset that her speech skills seem to be going south. This is amazing to me that she still has the brain cells to worry about this. She wants to know why she's having so much trouble speaking. I told her that it's because of the stroke, that her language center was damaged, and that at times she speaks quite fluently. (On Saturday, when I was there, she could hardly get anything out; when that happens, I give her a neck rub, only thing I can think to do). I put a call into the rehab dept today to see if they can recertify her for speech therapy, because I think that therapy helps her, but she plateaus and then they decertify her. I also have no idea if the increase in her pain and antianxiety meds is having an effect on her speech. I've gotten to the point where I don't know if my meddling is doing harm or good. Feeling very low tonight. Gonna go outside and see if we can see the NASA rocket that they're shooting off in Virginia in Brooklyn; if it's clear, they say we'll be able to see it!

V Veronica91 Oct 2014 · Answer 21 · 2014-10-27T19:47:43.000-0400

I think continueing with the speach therapy would be of help. Some stroke victims do continue to improve for a long time. Is she able to swallow alright? pain and anxiety meds will certainly have an effect on an elder. Depends on how long before your visit she had been given the meds. I think your idea of the neck rub is excellent and just tell her some days will be better than others for her which of course is true.
Hope you see the rocket and feel better in the morning.

B BarbBrooklyn Oct 2014 · Answer 22 · 2014-10-27T19:55:18.000-0400

Thanks, Veronica. I will remember that line. They scrubbed the launch tonight, but watched loads of sparkly airplanes. We're on flight path for both JFK and LGA.

B BarbBrooklyn Oct 2014 · Answer 23 · 2014-10-27T20:28:37.000-0400

I had a mostly interior meltdown today. My sil said that a letter from the dentist said that he wanted to pull all her teeth. It didn't. I got upset briefly. Reminded myself that sil ' s financial acumen is why mom still has loads of money. She called tonight with yet another hysterically funny dental bill. As long as we can hang together on the absurdities, we'll be okay at the back end. Wishing you all peace and love!

J jeweltone Oct 2014 · Answer 24 · 2014-10-27T21:54:14.000-0400

I have thought the same thing for my mom. We did put her on hospice last summer because she was declining. The hospice doctor gave me ideas on how to make it better for her--to bring her back to good health. I wanted to put her out of her misery. One year later, here we are and I am wanting to walk away from her nasty nonsense. I realize my mom is so miserable and I don't want to see her that way either. I also realize that is why she is so mean, negative and the biggest complainer. Guess what it is NOT our fault. Don't feel bad for thinking or saying out loud how you feel. Good luck to you and thank you for reading my post as well.

B BarbBrooklyn Oct 2014 · Answer 25 · 2014-10-28T19:11:23.000-0400

To Jewel and anyone else listening, this is a humbling journey and one in which we have NO control. The disease takes over and whether your parent or LO is pleasant or the opposite, most of us try to find other details that we CAN control.

B BarbBrooklyn Nov 2014 · Answer 26 · 2014-11-01T20:29:45.000-0400

Nice visit with mom today. They excised a cyst on her shoulder this week, she was happy with how they handled that. My son is running the NYC marathon tomorrow so proud!

V Veronica91 Nov 2014 · Answer 27 · 2014-11-01T21:41:36.000-0400

Good luck to your son.

G gladimhere Nov 2014 · Answer 28 · 2014-11-02T00:11:32.000-0400

When caring for a parent with Alzheimer's you almost expect that something could happen to end their life on a nearly daily basis. Not to those that are closest to you. I lost my best friend last Tuesday, he was my rock, and a tremendous source of support through caregiving and completely wacky family dysfunction. I will miss him terribly. Years of hard living caught up with him.

J jeannegibbs Nov 2014 · Answer 29 · 2014-11-02T00:51:20.000-0400

I am so sorry for your loss, gladimhere.

B BarbBrooklyn Nov 2014 · Answer 30 · 2014-11-02T01:59:50.000-0500

Glad, I'm so sorry to hear this!

I think this is the beginning of the end.

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