She won't go to sleep

bendershan

My mother is mid stage dementia and lately I can't get her to go to sleep. She will get in bed ,all tucked in say goodnight, in a few minutes she is at my bedroom door .I say mom , I thought your going to sleep ..whats wrong .The answer to this varies ,it might be "yes I wanted to tell you Im going to bed ",or sometimes its that and then "I dont know ",or she says she needs something but cant tell me what because she cant communicate very good now.. Last night she ended up in tears because she said she doesnt have anything. This was after she had come to my door at least every 2 minutes. I dont know what to do to help make going to bed a calm, relaxing thing. Should I read to her, stay with her until she sleeps? I am sure I am not only one who has dealt with this ,please help me ,it is very distressing for us all. I can not stand not being able to make her feel better, it breaks my heart.

M1

welcome to the forum bendershan, you have found a good place/people.  

Sleep fragmentation is a common symptom.  Does she stay asleep once she gets to sleep?  If not, there are medications that might help---Seroquel being a common one.  It's made a huge difference for my partner.  It is also used for controllling delusions and agitation, but it has tremendous benefits for sleep also.  Might be worth talking to her doctors about.

I'm sure others will chime in.  There are other things you could use, including melatonin which is over the counter, but a prescription med is likely to be more effective.

dayn2nite2

This ended up being the ultimate reason I had to place my mother.  I was working full-time from home as well and mom wouldn't sleep for more than maybe an hour at a time and was up and down all night.  We were never able to get any medication (Rx or over-the-counter) to work so placement was the solution.

Even after being placed, she would be up and down all night but the difference was she would be able to be supervised by the night shift staff who were getting their sleep at home.  She would get up and sit in the common area (TV was off) or she would choose to sit at the nurses' station for a bit, then wander back to her room.

bendershan

Dayn , I am so sorry that was your solution, I too work full time and can understand , but that had to be hard. I will be praying for you and your family.

bendershan

Thank you, M1 ,  for the greeting and I appreciate your reply. I am waiting for her Dr. to return my call, I  called him yesterday, I will ask about that medication. We have given her melantonin ( I know I spelled that wrong

but I am hesitant to continue that without his knowledge also. Am I being overly cautious ?

M1

Melatonin is pretty benign, but unlikely to make a big difference frankly.  It's the underlying brain damage that causes the sleep disturbance.  I doubt if the doc will care one way or the other about the melatonin.  I'm not aware of any major drug interactions that it causes.

sunnydove

Sounds like she just doesn't like being alone. I highly recommend getting her some kind of stuffed animal to keep her company. My mom has a bunny that she just adores and talks to and snuggles. We will talk about the bunny and how much the bunny loves sleeping with Mom. I also always make sure to have white noise on in her room not only to help her get to sleep but stay asleep.

abc123

I went thru this with my mom when she was stage 5. It was crazy! If I were her primary caregiver with POA, I would have talked to her doctor about some type of medication. I could NOT sleep knowing she was roaming the house all night. I was worried sick something bad was going to happen. I hope you find a solution. 

She’s stage 7 now and goes back and forth from being bed bound to randomly getting up and walking thru the house. I wish my dad would place her in a facility. Good luck.

xupd50tla

I have same problem with my mom. She can take 200mg Seroquel and she still doesn't sleep. She wants me to be with her 24/7. All she wants to do is scream. I had to sleep in the floor in her room to keep her from screaming so my  husband could get some sleep. Desperate for answers.

xupd50tla

I have the same situation with my mom. Dr gave her 200 mg Seroquel and she still won't go to sleep. She wants me in her room 24/7. I had to sleep in the floor in her room to keep her from screaming so my husband could get some sleep. Desperate for answers. Don't want to put her in nursing home.

Vikil

Sorry to hear that.  My mom also has disruptive sleep patterns.  Or I should say doesn't sleep patterns.  Unfortunately she is also an exit seeker so I can't let her be alone alone at night.  We have confounding door locks and alarms but now she is a window breaker which means she can really hurt herself.  

We used melatonin in the beginning as symptoms were mild then.  It worked for a while and is pretty harmless but ask the doctor.  We are now trying seroquel (quetiapine) but haven't found the right dosage.  Definitely let the doctor know what's happening with your mom.  I found it very helpful to journal mom's behaviors (what, where, when, duration) in order to be very specific in medical discussions.  

Bless you for giving your mom such loving care.  Remember to take care of YOU too.  Sometimes just reading or sharing on this forum helps me stay sane.  

ninalu

Hi Bendershan,
Lots of good replies here. I thought I would add my experience, too. 

When I lived with my mom, we went through the same sequence that you describe; mom is tucked in, lights turned off, and after 5m she's in my bedroom saying, "Hi honey, I wanted to let you know that I'm going to bed now." It took me several weeks of this happening to reach out to her doctor for help. 

Here's what was going on for my mom:

1. As her Alzheimer's has progressed, her need for emotional connection and closeness has increased. She's not able to sleep if our goodnight isn't very nurturing and tender. Even when she was fully able to undress, brush her teeth, change into pajamas, etc - she started to need a lot of reassurance and emotional support at bedtime. 

2. Her day-night cycle was starting to be disrupted. Previously a great sleeper, now she would be more wakeful at night and more sleepy during the day. If I let her nap during the day, then she would be more awake at night. This was hard for me because my instinct was to let a sleepy person sleep.  

3. Her need for social support was increasing. Going to bed seemed particularly difficult on days when it was just me care-taking and I was balancing my work with caring for and being with her. My guess is that on some level my mom was picking up on my stress and it was impacting her. On days where we had a dedicated outing by ourselves or with friends, she seemed far more settled and able to sleep. 

Ultimately, I worked with my mother's doctor to adjust her eating / activity / medications to support sleepiness at night. In my mom's case, Seroquel was the only thing that helped. And a low dose of it worked remarkably well for about a year - meaning we achieved a full night of rest for her (and for me; we lived together.) No other medication that we tried (anxiety meds, trazadone, ramelteon, melatonin) came close to what we achieved with Seroquel. That said, my understanding is that medication responsiveness is different for different patients. I've heard people rave about Melatonin! 

Wishing you a successful remedy to your situation. Let us know how it goes. 

MarissaKay

I've been going through this a lot.lately too and it makes me feel better knowing that I'm not the only one. My grandma usually has a straightforward routine but over the last few weeks it's changed so she sleeps and then stays up for a few days straight. It's beyond stressful and exhausting. For safety reasons, I cannot sleep if she's awake and that makes things very hard. I hope things improve or her routine gets better. I hope everyone is holding up ok.

Norma W

Welcome.  We've all been through the sleep/non-sleep cycle.  Seroquel is the most helpful.  I will add that it took a few tries with the dosage and a few months after that before we settled in to a routine and sleep came back around.

I know that's not what you want to hear, but if you stick with it eventually it will help and you can then get some rest too.

Good luck!

live in daughter

Hi- when my Mom couldn't sleep we would get her up in her recliner chair in the living room. She usually would drift off to sleep from there. It wasn't that she was in pain, short of breath, or needed to go to the bathroom. It was as if she just wanted a change to sleep somewhere else.

We sometimes gave her a half dose of Xanax as suggested by the hospice nurse. This would help her relax and make her sleep more restful.

Hope this is helpful for you.

live in daughter

Hi- we had my Mom on seroquel but she was still very agitated. We switched to Risperidone which helped to subside some of her agitation. It didn't eliminate episodes all together but there were less frequent and not as severe.

We gave Risperidone in the afternoon prior to the usual times my Mom would begin her agitation. 

Hope this helps.

Natasha Cruz-Segarra

Same issue with my mom, so I just started laying in bed with her till she fell asleep & then I have a baby monitor so I can hear if she is waking up or moving around. I know with her she get scared easily so I try to make sure I get there as quickly as possible.

Mobile AL

Before daddy became bedridden he did the constant good night ritual. He would get up to tell me he was going to bed. Get up to check that the doors were locked. Get up to get something to drink. Get up to sit in the kitchen and fall asleep at the kitchen table. He was up and down all night. Went outside a couple of times and rang the doorbell to ask me if I knew where his house was. Sleep became a rare thing for me, too.

I tried to keep him awake during the day, opening the blinds and curtains to let in as much light as possible, clean the room he was in, talk to him. Anything to keep him awake as much as possible. After we ate dinner I closed the blinds and curtains and turn on the lamps and TV. We will drink an Ensure together around 9:00, chatting a bit even though he couldn't carry on a conversation. Lights and TV off at 10:00 and good nights said. The routine seemed to be comforting to him most nights, he enjoyed our together time I think. It didn't work every night but it seemed to cut out a lot of the bad nights for us. I wonder if a LOWD feeds off our anxiety which makes them more anxious?