Tips for nighttime anxiety or nightmares

May flowers

For some background, my post about my FIL’s surgery and being discharged here for rehab is here https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559577

The hospital took him of Risperdone and Gabapentin to get him awake after surgery. We are working on tapering him off lithium, lexapro, and donzepil, and the hospital doctor agreed this is the best hope for his physical recovery. He is too much of a zombie otherwise. We plan to leave him on memantine for now. The reason he is on these drugs is that he was pushing/hitting other residents last fall so they had to medicate him. As he is now bedridden at our house, he is no danger to anyone. We will keep evaluating, talk to  doc and make changes if he needs to add any med back if needed.

Good news is he is more alert and communicative and cooperative during the day. He is more awake to eat and be moved around and is moving himself more around the bed. Today, I played his favorite music and he was singing along. He is eating great, vitals, are good, toileting is good. He is able to stand and be moved to a chair. His hands have been shaking uncontrollably but I believe that is getting somewhat better. Today he was able to hold his cup and drink.

But nighttime, he is having major nightmares or anxiety. Any tips for that? I thought it was pain, but when we ask he says no. He is mostly repeating words like “help help help” or conversations, repeated cuss words... sometimes he is doing that while he pees (in the daytime too). He *really* hates peeing in a pull up, being changed, and fusses every time. 

He is taking half dose of lithium and lexapro at night with the idea to wean off. Everything else is morning. I have wondered if they are causing his nightmares?

Before the facility, we controlled his sundowning with melatonin but I can’t start back on that until he’s off the other.

Thanks for any tips to help him at night. If it’s just something that is part of this, then earplugs for me. DH can sleep through anything.

SusanB-dil

Hi May Flowers - I'm sure others will weigh in with other options, but my first thought is to tell his doc what is happening. Maybe a med could be tweaked a bit?  also maybe check to see if the side-effects of the current meds could be a cause. or even a possible withdrawal of the ones discontinued? in which case, maybe, hopefully, will clear up on its own...

Meanwhile - good that he is doing better otherwise! You're doing a great job watching out for him!

King Boo

He's lucky to have your care. Just a few thoughts - but of course your medical team is best.

Lexapro is a very common anti anxiety medication.  It was a game changer for my LO and did not affect his ability to be awake.   It most definitely made his care better, and his quality of life better.

I understand his clinical presentation may have resulted in some extra medications being 'weaned' but please please stop and ask yourself if really the goal of "all" medications is a good one.  Or if it is just temporary.  

Remember, leaving him anxious in bed yelling help, help all night really is not a good quality of life for him.  Being frightened and scared is a terrible state to be in.   There's more than just powering it through for you and your husband to sleep.

I would aim to keep him on anti anxiety medication, under the direction of the best professional out there, a Geriatric Psychiatrist MD who works with dementia patients.  Unless you receive medical advice from the Geriatric Psychiatrist otherwise.

abc123

King Boo, well said.

May flowers

Good advice all. I will research and find a good geriatric psych. The visiting nurse today suggested the same. I don’t want him anxious, of course,  I just don’t want him a zombie. If the lexapro can help him sleep, and not ruin his day, I certainly will keep him on it. The idea for us was not to keep him off all  meds, but to only be on the meds he absolutely needs. What has been a struggle is that the doc/psych he had last would try something, and if it didn’t work, left him on it, and add on a new drug. They also took him off his multivitamin, Vit d3, fish oil and areds for his eyes. I don’t know why.

He was never anxious before going on all these meds, I feel like the combo is just too much for the situation right now. Every healthcare person we have talked to in the past two weeks felt it was overkill. I’m sure probably necessary from a liability standpoint for the facility  - that he was too drugged to harm anyone because they cannot watch everyone every second of the day. 

Today was the first day DH and I felt like we had him “back” somewhat (I mean back with dementia, not back pre-dementia which will never happen).  He was affectionate, clearer, was able to feed himself, was able to stand, walk, communicate more about things he didn’t want and want, and follow simple directions. He laughed several times today. One time he took my hands and was moving them around with the music. I said are we dancing? He said yes, and kissed my hand. How sweet is that? He said my name and DH’s name several times during the day. He even called the dog by name. He hasn’t recognized us in months. 

I left the music on and a nightlight and he is sleeping much better tonight. 

A funny aside (and a little scary), the OT was trying to get him standing and FIL said, “no, I don’t think I can.” The OT stops helping and starts to jot down a note, and FIL popped right up on his feet and started walking. He looks so frail, at 125 lbs, he is skin and bones - but everyone is very surprised at how strong he is.

I spent 2 hours day when he had the runs changing diapers and we must have gone through 10 diapers, a pack of wipes, and a tube of cream. By the end he was lifting his hips so I could change him... bless him... but is there a trick to that or is that the only way. He isn’t able to tell me before it happens, I just get an “oh s***” and know it happened, lol.

Marta

Weighted blanket.

kkrow

Greetings, all.  I am new to this message board.   I'm looking for any ideas on this topic, related to my mother, with dementia

My mom is a fall risk.   I'm paying out of pocket for overnight people which is when the risk is the greatest.  

After a recent stay at a hospital and rehab facility, (she had SIX falls in two weeks), she then had 6 weeks of physical therapy at home   So between the rehab and at home physical therapy, she's regained strength and hasn't fallen since.  But as time goes on, she will weaken again, and the fall risk becomes stronger

Her doctor seems reluctant to order another course of PT.  Perhaps it's because of insurance.  With her dementia, a pre-determined schedule with a professional has been the most effective.  Any ideas how I can get her more at home "exercise", even if it isn't strictly physical therapy?  Thanks for any ideas.

Stuck in the middle

Hi, kkrow, welcome to the group.  

I get the best results with an exercise program when I have a fixed schedule and an exercise partner who expects me to show up for exercise time.  Can you or someone else schedule a time to exercise with her?  

You will get more replies to your posts if you start your own thread BTW.  Just click on the "add topic" button.

Cyndisaunt

I have found some chair yoga classes (so many free on youtube or searching for senior movement class) there are some great videos out there that have humor for both the caregiver and LO. I like to switch it up, but my LO finds the same video fun everyday. 

Here is one: https://youtu.be/1DYH5ud3zHo

I also bought a used recumbent bike (sit reclined and pedal) that has been great on the days when she is feeling like it... she has days she complains of back pain, but still enjoys riding at a very slow pace. I walk along side and we both get exercise. 

Those are the two movements we do every day (weather permitting for biking). 

If you want to post your own post with a title requesting what you are wanting, I am sure you will get a lot of suggestions. 

Cyndi

May flowers

Update:

Had a telehealth appt with my FIL’s former neurologist. After describing his behaviors and extreme anxiety. She believes it is a combination of anxiety, coming off anesthesia AND withdrawal from Risperdone and some of the meds he was on.

She recommended coming off Lithium, leaving him on 1/2 Lexapro and adding back 1/2 Ativan at night (the hospital took him off Ativan too). She okayed melatonin at night too. So now he is just on those and vitamins. His neurologist suspects the facility was giving him Ativan around the clock and that was probably the bulk of his withdrawal.

That has done the trick. He is sleeping through the night, and still alert and calm during the day. Cognitively, he has gone from being a “zombie” state prior to his fall,  to recognizing us more often, being able to express his wants, smiling at comments, interacting with the dogs, knows where he is consistently, and even speaking in sentences sometimes again.  He is able to follow simple directions again. 

Physically, he is standing unassisted (but we do run to him the minute he gets up) and walking assisted. He is more steady without the walker, but of course we keep a hand on his PT belt. He also likes to roll himself around in the wheelchair. His tremors are nearly gone. He is able to feed himself again with finger foods, hold and drink from a cup, and tries to feed himself with a spoon (taking it out of my hand), so I bought some fat handled spoons and red bowls with a lip (OT suggestion). He brushed his teeth tonight and was able to use a toothpick again (something he has done his whole life).

Of course he still needs 24/7 supervision and I have my computer desk set up next to his bed and chair so we hang out all day.

He is eating and drinking great.

He is very determined to walk. He stood up maybe 25 times today, and walked maybe 5. All his initiation. At this rate he will be back to pre-op physical form in no time. 

He asked me today where the “others” were (I think he means the other residents). He asked about one lady by name. It made me so sad. I know he misses them, but we won’t put him through that medicine wise. Plus, the PT told me the other day that most facilities she goes to do not really want the patients mobile. It is more work for them. 

IF we can get him mobile enough to transport, I believe we will look into day programs at the facility (the one we like) where I can be there to assist, but he has some interaction.

Finally, he is still not going on the toilet. He cannot verbalize in time that he needs to go. So, I have him sit there a few times a day. At the facility he was at before the flood, they only used depends at night, and asked all day if he needed to go. At the facility he was moved to, I believe they left him in diapers all day and never asked. Anyway, if that is where we are, that is ok. I just know he really hates being changed!

Jo C.

It was stunning to read how many meds and the type of meds your FIL was on.  I am sorry for what he had to experience.   By what you have written, I too would be suspecting withdrawal from the meds he was on for what has been happening.  It is wonderful that now the meds are off that he is bright and functioning so much better.  

Just wanted to share a bit regarding the melatonin.  It looks as though your FIL is doing well at sleep time now which is wonderful; however, if he begins to have bad or florid dreams, you may want to stop the melatonin and see what happens.

Our son began to take melatonin to aid in sleep when his work schedule changed.  He had to stop it as he began to have tremendously wild dreams that often went into realistic nightmares.  He tried to adjust the dose but continued to have the problem until he stopped the melatonin.

Not saying this will happen, but something good to know for a "just in case" sort of thing.

J.

JJAz

May flowers,

Between this post and your previous post, it sounds like FIL has some symptoms of Lewy Body Dementia.  It is the 2nd most common type of dementia and LBD patients are often misdiagnosed.   LBD patients are often extremely sensitive to medication and certain ones are very dangerous.  You can find more information at LBDA.org

May flowers

JJaz, thank you for mentioning Levy Body dementia. He was diagnosed with Vascular Dementia around 7 years ago, but had symptoms a few years prior. There are definitely things that don’t fit everything I’ve read about dementia. I will ask the neurologist about it next appointment, and do a lot of reading.

I believe he does have a sensitivity to certain medications. What he is on now seems to be working, and they are very low dose. He has slept all night the past few nights and the cussing has gotten better.

Is it a symptom of LBD to be very driven to move constantly? He has two speeds, walk and sleep. The PT was here today and they walked for an hour - as soon as he sat he was ready to walk again. 

I also have not been able to figure out the communication - sometimes it seems he cannot verbalize anything and a few minutes, he can string together sentences that make sense. Sometimes he has a blank stare and other times he makes eye contact.

He is light-years more communicative than he was just a few months ago.

I know some LBD can be dangerous, so I keep a wary eye when working with him, but so far he has been very sweet and compliant except diaper changes which he really hates. I am just not seeing (yet) what they saw at the facility. I’m glad he tiny, though, and I’m pretty strong. I own a farm and used to unruly animals so I know to never turn my back, lol.