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 One step forward, two steps back 
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Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post One step forward, two steps back
Six weeks ago, we took my mom to the hospital because her delusions were out of control. We couldn't get in to see the neurologist and we wanted to stabilize her meds and figure out if she needed to go into a care facility. (This was the beginning of the steep decline she experienced; prior to that she had been living at home alone)...

Well, she broke her arm in the hospital, needed surgery, and was transferred to a SNF. Moving her to the SNF was full of trials and tribulations, naturally. We knew she'd only be there temporarily. When she finally got used to the SNF and existing with the splint on her (dominant) arm, it was time to move...

Two weeks ago, we moved her to a nice ALF with a dementia unit. Another round of getting used to a new place, new people, etc. She'd finally settled down, got calmer, etc....

Tuesday, she got her splint off. I thought to myself, finally, we can set a baseline, get her feeling at "home", using her right arm again to eat, toilet, etc.

Well, Tuesday night she fell attempting to go to the bathroom, hit her head, and was hospitalized again!

The good news, if there is any, is that she doesn't have a concussion, but they want to keep her in the hospital for a few days because she has fluid in her lungs (they're not saying pneumonia) and they're giving her antibiotics. I guess the other good news is, now my brother and I are a little more LBD savvy and have been better advocates for her in the hospital. (She has a sitter, and know not to give her any meds without talking with us).

I have been happy with the new ALF so far, but what should we ask them about how to prevent this from happening again? A bed alarm? More frequent night check ins? (She's been nervous about the night check ins because she doesn't like "men" in her room at night).

Oh, and do I ever get to hope for a period of relative stability??? (silly question, no answer necessary...)

Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.

Thu Apr 26, 2012 7:58 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: One step forward, two steps back
Wow, poor Mom! Poor Melissa and Brother! You have been going through some very challenging times. I'm so glad that she didn't have a concusion, and with you I hope that things settle down into some at least temporary stability (whether that is a silly hope or not.)

Someone else can give you the benefit of their experience in evaluating an ALF. I just want to give you a hug!

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu Apr 26, 2012 11:30 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: One step forward, two steps back
I read this and laughed out loud:
"Oh, and do I ever get to hope for a period of relative stability??? (silly question, no answer necessary...)"

Oh, you silly girl. Yes, it is good news and you and your brother have been around the block now and know what's what. Good move on a sitter and no meds.

I'm sure people here have posted the same question before -- how to prevent falls in an ALF, or even in a SF.

Some options:
* 7x24 sitter
* sitter when your mom is awake
* put the bed on the floor
* bed alarm and chair alarm
* bed with rails that she can't get out of
* chair with strap or buckle that she can't get out of

You'll have to see what they allow in the facility. Many ALFs don't allow full rails, and many SNFs only allow full rails with an MD's order. Talk to the care coordinator about it.


Thu Apr 26, 2012 11:56 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: One step forward, two steps back
Falls will become unlikely when she becomes as debilitated as my husband is now. He used to fall fairly frequently [though never seriously injured] but now he lacks the mobility. :cry:

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Fri Apr 27, 2012 12:20 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: One step forward, two steps back
The facility should have a bed alarm on there now, given your mom's recent unfortunate history. You certainly can request more freqent night checks. They may want to set her up on a toileting schedule.
As she becomes less and less mobile the falls MAY decrease. But then again, there was my dad who, when he still had the strength, was able to scoot his butt out of his wheelchair so he'd purposely fall on the floor to get attention. If he wasn't attended to THE SECOND he wanted someone to take him back to his room, or whatever, he'd do this so they'd have to pick him up and take him back to his bed. Luckily almost everywhere he fell in the ALF was softly carpeted and he had very strong bones, so no breaks, thank goodness. Then he'd tell me "they don't have very good service around here. This place isn't like it was advertised." Oh boy, try explaining to a person with LBD the ratio of CGs to patients and that a 2 min. wait isn't bad, when the person has absolutely no concept of time!
If you are lucky your LO may be on a slow but steady decline as opposed to some of us who experienced that but also there were periodic huge declines which took a lot of quick adjustments for all concerned parties.
It isn't easy. Hang in there and come here for the support you need as often as you want. Lots of empathy here. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Fri Apr 27, 2012 10:39 am

Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post Re: One step forward, two steps back
Thanks all for your replies! Mom is hopefully going to be discharged today. They also wanted to reduce her extreme edema in her legs (related to her cancer/heart issues), so they're giving her IV Lasix (sp? - a diuretic).

The ALF will give her a bed alarm and have been really concerned, even visiting her in the hospital.

Thanks again for the sympathy and cyber hugs - it's so nice to hear from people that have "been there" and yes, I was being facetious about looking for stability (ha, ha).

Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.

Fri Apr 27, 2012 4:38 pm

Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: One step forward, two steps back
First of all, big hugs to you and your family! My mom had been falling as well. She is at home, with full bed rails at night, bed/chair alarm during the day. As time goes by, her mobility is decreasing and so are the falls.

Sun Jun 03, 2012 4:05 pm
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