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 Is this sundowners? 
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Joined: Thu Mar 18, 2010 4:33 pm
Posts: 11
Location: Denver, CO
Post Is this sundowners?
It was another night from hell. I got mom into bed at 10:15pm last night, she indicated she was tired and willingly crawled into bed. The day itself was good, so I didn't expect what came next. At 10:55 I heard a bang and some creaking noises, got up and mom was in the kitchen, she didn't turn on any lights. I got her back in bed with no problems, but I knew it wasn't over. At 11:30, she got up again, I caught her before she left the bedroom. Once again, I got her back into bed, this time she wasn't happy with me. I stood in the hallway for a while and sure enough within 5 minutes, the door starts to open. She saw me and slammed the door closed. I heard her banging things on the dresser so I went in the room. She was trying to turn off the baby monitor so I couldn't her what she was doing.

She shoved past me and started pacing the house, still not turning on any lights. I finally turned on the bedroom and hallway lights so she could see where she was going. She was very aggitated with me for following her around the house even though I calmly indicated that I was just trying to keep her safe. When I tried to keep her from going down the stairs, she almost pushed me down the stairs herself and I would have gone down if it wasn't for the molding around the doorways for me to hold on to. I grabbed the phone and called dad at 12:30am (he was out of town on a business trip and will be home shortly tonight). I tried having her talk to him, but wouldn't put the phone to her ear and when I tried taking the phone back, she grabbed my wrist very forcefully until I finally was able to take the phone back. He didn't know what to do, so I called my aunt, but she just continued to become more aggitated. Dad called the hotline to see what we should do and told me they were expecting my call. I called and informed them what was going on, that I sensed the hallucinations were getting worse, she hasn't had a BM in about a week, and refused to pee all day as well. They suggested I call 911 and have the paramedics come and evaluate her. So thats what I did. While I was on the phone with dispatch, mom almost hit me in the face with the digital picture frame and she yelled at me without any distinct words.

When the firetruck, police and paramedics arrived (the neighborhood was lit up like a christmas tree), she was calmly sitting on the couch like nothing had happened. By that point I had dad back on the phone so he could at least be a witness to what I was telling them. I informed them that she did fall wednesday evening, but didn't seem to have any injuries, told them about the infusion study that she is involved in and the reaction she had on monday to the treatment, and also that she was combative with me and up till 4am wednesday morning. They decided to take her to the hospital and make sure there was nothing wrong with blood or UTI. As they were escorting her out of the house, mom turned and gave me a horribly evil glare.

My aunt came to get me and went to the hospital. When we got there, it was 3:00am and mom was sitting just fine in the bed, eyes closed and seeming to be in good spirits. They had to insert a catheter to get a urine sample and she was all smiles after that. It was difficult to keep her from trying to remove the needle from the IV they set up to get blood samples and she wasn't willing to sit still. She kept trying to get up and I had to continue reminding her that she had no pants on. She was finally released her about 4:45am, blood work was fine and no UTI. We got her dressed and back home at 5:00am. When we got into the house, she started to pace the house again. I couldn't believe it. I finally got her into bed at 5:15am and was up at 11:30am.

She was calm most of the day, had a little outburst with the caregiver while I was trying to get some sleep this afternoon. When I was woken up because mom wanted the cats to be fed, she became very angry with me. She has still exhibited aggitation toward me.

Has anyone else experienced this type of behavior?

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Megan

"It's not where you look that matter, it's what you see."


Sat Apr 17, 2010 5:11 pm
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Yes, my husband is sometimes like that. But I would like to know what infusion study she is on and what medications she is taking.


Sat Apr 17, 2010 5:18 pm
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Joined: Thu Mar 18, 2010 4:33 pm
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Location: Denver, CO
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Is it common for them to stay up until 4-5am? Does it happen at the final stage?

It is the Bapineuzumab drug study. She was in for a year and a half as a double blind, then was accepted in the continuation so we now know she is receiving the real drug just not the doasge. She had her first infusion with the drug on monday, which did not go over well. She became aggitated, kicked our caregiver, and ripped the needle out of her arm.

She refused to go to bed on tuesday night as well, was up till 4am but didn't have the combativeness like the other night.

The other medications she is on is Aricept (allowed 4 1mg pills a day), Effixor (150mg twice a day), Valium as needed (2mg), and just started 0.5mg of Risperdal at night.

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Megan

"It's not where you look that matter, it's what you see."


Sat Apr 17, 2010 5:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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I don't think of this as sundowning behavior. It is very typical dementia-related behavior.

Was your mother constipated?

You might check with your local chapter of the Alzheimer's Association to see if there are classes your family can take in dealing with dementia-related behavior. It does help to know some techniques for this.


Sat Apr 17, 2010 5:45 pm
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Was the Risperdal ordered before or after this agitation?


Sat Apr 17, 2010 5:47 pm
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Joined: Thu Mar 18, 2010 4:33 pm
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Location: Denver, CO
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I'm sure she is constipated, but she refuses to admit it. She speech is down to nothing, so all we get is a head nod most of the time. I have already contacted the alzheimers association, I am actually a peer volunteer for their online community.

Yes, this type of aggitation started on monday, the Risperdal was ordered last week, started taking it monday night.

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Megan

"It's not where you look that matter, it's what you see."


Sat Apr 17, 2010 6:02 pm
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Perhaps it might be wise to ask you doctor if you might discontinue it for a few days to see if the behavior improves. My husband did very poorly on Risperdal, although not in the same way. He lost his ability to walk and became more disoriented. He bounced back after taking him off of it. Just a suggestion. With LBD, medications can have paradoxical and even harmful effects. My husband became paralyzed of limbs and speech with just one 25mg dose of Seroquel and yet others seem to be able to take it fine.


Sat Apr 17, 2010 6:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Sleep problems are very common in any type of dementia or neurodegenerative illness. It's not indicative of the final stage.

Did the xray the bowels at the hospital to check for a bowel impaction?

As I recall, the Bapineuzumab study is for those with AD. (So presumably she had an AD diagnosis to get into the study.) Is this behavior a possible side effect of Bapineuzumab?

I'd call the MD in charge of your mother's participation in the Bapineuzumab study first thing. Review the behavior of late. Certainly mention the introduction of Risperdal. Reconsider both the Risperdal and the Valium with the prescribing MD. (The Valium could be causing paradox anxiety.)


Sat Apr 17, 2010 7:13 pm
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Joined: Fri Jun 19, 2009 11:23 am
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Post post subject
My 96 year old Aunt had a very simular reaction with only one dose of resperidol. Very verbally mean. Her dx is just dementia but I think she is haveing symptons of LBD also.
Mary


Sat Apr 17, 2010 9:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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I'm so sorry you are experiencing this very difficult behavior, and then for your mom to do Show Time when she gets to the hospital! Very frustrating, beyond words frustrating!
When my dad was hospitalized last year I was told by the nurses that sundowning is when natural sunlight wanes in late afternoon, it has an effect on dementia patients and they start hallucinating. He did that for 3 afternoons in the hospital and several days after that in rehab. Then his hallucinating miraculously stopped.
I wish you much luck and patience in trying to get your mom's behavior under control. This is a terrible disease. Try to keep yourself healthy and relaxed (I know most days that seems impossible to do!). Lynn


Sun Apr 18, 2010 10:37 am
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Joined: Wed Aug 05, 2009 11:17 pm
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Megan,
Reading your post was the same story I went through with my Mom almost a year ago now. My Mom stopped sleeping, therefore no one sleeps, when I would try to follow her and keep her safe she would get very angry with me. When I took her to the hospital for a few days to see if they could straighten out meds to help her sleep, they put her in a room with a locked door, because they couldn't have her out walking around all night. I deceided that was the best ideal for her at home. My Mom has a big bedroom with a bathroom, so I put a couch and chair, TV. I removed any thing from the room she could hurt herself on. Then I went to Cosco and got a security camera with night vision $120.00. At night we locked the door, she would try to get the door open, but when it wouldn't open she would just get busy in her bedroom. She spent alot of time in the bathroom, or just folding blankets, walking around. She didn't get upset because no one was around to bother her, but I could still keep an eye on her with the camera. You just watch the monitor by plugging it into your TV, it amazing how much help the camera is. She was happier to just be left alone with no one telling her she couldn't do something because she really did stay up almost all night and we couldn't find any med to keep her sleeping. She would go to sleep but she wouldn't stay asleep very long at all. I think the most diffucult time for us as caretakers is not being able to sleep. At least knowing my Mom was safe and couldn't take off, I am able to sleep. It is better to just monitor her and not let her see me, because the minute she sees me, the battle would begin. But not seeing me, she would just stay busy all night doing nothing, then finally fall asleep sometime early in the morning and sleep some, then when she got up for the day, her mood was much better as was mine. I'll be thinking of you Megan, this is a difficult journey, but your not alone. Cheri


Mon Apr 19, 2010 11:00 am
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Joined: Sun Mar 21, 2010 7:01 pm
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Post I feel your pain
My dad, about once a week, freaks out all night long - trying to escape, yelling for help - won't sit down or calm down, meds don't help -it's crazy and so incredibly stressful and draining. It's nice to know I'm not alone. I can't even tell you how hard it is, well I guess I don't have to, you know. Any normal person on the meds he is on would sleep like a log - it's like the meds do the opposite or something - ugh. Nothing like no sleep, a patient with LBD, work and a 4 yr old who needs me too to make me feel insane.

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DawnnaT - caretaker/daughter of 67 yr. old LBD patient - late stage.


Mon Apr 19, 2010 5:05 pm
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Joined: Thu Mar 18, 2010 4:33 pm
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Location: Denver, CO
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Thank you all for your responses. Because the aggitatin started before we gave her the first dose of risperdal, we did not take her off the medication. She had one more round of cambativeness with my dad on saturday evening, backing him into a corner and hit/kicked him several times. When they got her calmed down, she went and picked up a picture of my brother (one from when he was a little kid), stared at it for a while, then threw it across the room. We have not had any outbursts since then.

It is slightly comforting to know that others have experienced this behavior as well, even with how unnerving it really is. I'm still trying to catch up on sleep from last week and dad is out of town again, but our caregiver is staying here with me until he returns. We take turns following mom at night, refilling her sippy cup, and getting meds ready.

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Megan

"It's not where you look that matter, it's what you see."


Fri Apr 23, 2010 10:12 am
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So dad is out of town again, but I have reinforcements this time. Our caregiver is staying with me until he returns on monday (morning noon and night). We had another episode last night, about 9:30 she flew off the handle. Hit me in the arm and told me to get out, she almost pushed a good sized house plant off a table, almost pulled another one over while trying to get the cat. She hit the tv screen and called the woman on tv a f***ing b*tch and a little later tried to pull the cord out of the tv (not the part that plugs nto the wall, but the part that actually goes into the tv). She also put one cat into the bathroom sink and tried to harm him.

Today I am going to get safety locks for drawers and cabinets, to keep her and us safe. I am also getting a locking door knob for my bedroom so I can lock the cats up and keep them safe during episodes like this. My cat is still scared from last night and won't leave my side. Mom had flung my bedroom door open, startling and lunged toward my cat.

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Megan

"It's not where you look that matter, it's what you see."


Sat Apr 24, 2010 11:12 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Is she on meds to help quell her aggitation and aggressive behavior? Does she act like this more when your dad is gone or is it about the same no matter who is there? Lynn


Sat Apr 24, 2010 11:42 am
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