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 Restless evenings: sign of something? 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Restless evenings: sign of something?
Had a call from the head nurse this afternoon, and it seems that my mother has been restless in the evening, moaning and trying to come out to nursing station. She has had a lot of pain, reasonably well controlled with vicodin, but they also have a standing order from hospice that they can request upgrade to something stronger.

Typical pattern in evening: I go over daily and feed her dinner in their little dining room around 5. Appetite varies but she will always eat a little dish of ice cream. Tonight they had chicken-fried steak and my mom, who is from TX, ate quite a bit of minced up steak with gravy (for her). They give her meds during or right after dinner. Then I change her, brush teeth, and tuck in bed as she always says she is very tired by 6 pm. The last week or two, instead of staying in bed and mostly sleeping until the midnight meds, she has been waking up around 8:30 and trying to walk out of her room (sometimes without walker.) One evening last week, she was very distressed and thought my childhood friend J had committed suicide. I had to go back and calm her down. Mostly, though, she is nonverbal. When asked, she denies pain, says she is all right, but moans steadily (though she has been doing this for over a year so I tend to discount it as a sign unless accompanied by grimacing or flinching, or if she actually says it hurts.) She moans a lot but a lot of that seems habitual, and she allows as much.

I've told them I'd like to pin down the cause of the agitation before switching meds, and then treat the cause, not just the moaning and wandering. My best guess is that it is anxiety, possibly due to delusions (she is on seroquel but has been stable at 25 mg 2x/day for a while, could need to increase). It's also possible she is worrying about her health. Pain is a third possibility but I think lower down scale. And I guess she could just be lonely. I'd treat these differently.

If she were more communicative, it might be easier to sort out. Her language skill is relatively spared - if she talks at all, she is quite coherent and sometimes quite funny. But the effort to initiate speech is so great now that she rarely responds verbally at all, mostly just says she is ok. I'm almost the only one who can get a semi-conversation going. I was going to go back tonight to help figure out what was bothering her, but I guess she went to sleep ok! (Maybe the TX comfort food helped.)

Any suggestions would be welcome! I think I can make some good responses if I know what's troubling her, but it's really hard for me to elicit, and harder for staff even though they are very patient, thoughtful and dedicated.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jun 28, 2013 1:10 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Restless evenings: sign of something?
What about keeping her up a bit later so perhaps she'd sleep through the night and not get up at 8:30?
The pain issue is one that you may never get to the bottom of. My dad couldn't feel pain even when he had a reason to be in excruciating pain. In his last few months he complained of pain when there was no reason. Even lightly touching his arm would nearly send him through the roof at that point, so he was put on morphine. That not only decreased the pain but it made him sleep for hours after every dose.
If your mom does appear to be in pain it may be wise to have her take a stronger pain med, but unfortunately it is very difficult to know if she is really experiencing pain or not.
I know this is like having no answer at all, but it was the dilemma we experienced. I hope you can find an answer. Lynn

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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 Jun 28, 2013 7:13 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Restless evenings: sign of something?
Laure,

Sounds like it might be a time for a change in meds or routine, you know thats why they call this illess the rollercoaster, ya just never know. I hope they can get her back to where she was before the changes started to take place.

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Irene Selak


Sun Jul 07, 2013 11:02 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Restless evenings: sign of something?
Bad news, good news, bad news, good news - the typical pattern of this highly atypical condition continues.

Arrived to feed my mom dinner last Monday and found that hospice had recommended a change in meds in response to the anxiety and restlessness at night. So far so good. Unfortunately they had just followed a standard protocol and instigated a prescription for olanzapine, which is contraindicated in LBD. I had to countermand the doctor's order, which of course is a hassle in itself, but luckily I have sufficient credibility with all the nurses that they agreed. The next morning I got hold of hospice team, again lucky and got them in meeting with their geriatrician and interventionist, who agreed with me after some discussion. My thought was just to try an increase of her low dose quetiapine (seroquel) which she tolerates well. They talked it over and decided that was in fact the best strategy.

She has actually responded quite well and is more awake in early evening and sleeping better at night, with less anxiety. They usually show a movie on the big-screen tv in their little living room after dinner, and my mom has taken to going, though who knows how much she can see or hear. I asked her the other night if she wanted to go to the movie after I brushed her teeth, and she said, "It depends on what the movie is!" (They will show the same one several times over a few weeks as most of the others have AD and can't remember whether they've seen it before, but my mom's memory is relatively spared.) She is even eating better.

But the bad news is that this is a reminder of the need for constant vigilance and the importance of my being there every day at least for a while. The nursing staff are great, and there is a pretty good staff-to-patient ratio. I know more about LBD, though, and my mother communicates more fully with me. So every couple of days, I find something that needs intervention. Good news: the staff are really helpful and we are working well together, and they appreciate that I show up, help out, and try to make their lives easier.

And at the same time, my dad is increasingly frail, and can't make it over there every day, and I also have to spend time with him and visit and check on him.

The real worry is that I'm going to be in Boston for an entire week for the Alzheimer's Association International Conference, the big annual international meeting. Giving a talk the first day and chairing a session and giving another talk the last day. I'll call daily, and my husband has promised to stop by, and my daughter will try to go by too (I've arranged some babysitting help for her) and the dear Quakers will be on call if needed to help. But it's not the same. Sigh.

I am planning to go to the big plenary session on LBD, and will report back on anything new that I learn.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jul 08, 2013 1:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Restless evenings: sign of something?
Laurel,
Job well done with the advocating for your Mom, yes it is ever costant but you did it this time.

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Irene Selak


Mon Jul 08, 2013 2:33 pm
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