Suggestions | Help with Getting Her to Sleep

I can relate as my mom has medication anxiety. She’s currently taking hers, but it might not last. It can be frustrating.

It’s quite difficult to get people to take meds if they resist. I know the staff in facilities usually figure out a way, but technically even they can’t force the meds on residents.

Is your mom keeping others awake in the home? Why is her lack of sleep bothersome? Does she complain ?

Sleep disorders are common with dementia. Most people that I have ever known who had dementia were on meds to help with agitation, depression or sleep issues. But, if your mom refuses……it makes it tough.

I hate to sound pessimistic, but I might focus on the future care of your dad. Is he open to that? After my experience with seniors who are resistant to care and meds…..I’d hire others to deal with it. It’s very stressful, exhausting and time consuming.

I might get a legal consult with an elder law attorney to get info on the situation.

Good luck with whatever measures you take. I hope you get some ideas that help.

@celia16 Thanks for your post.

Let me respond to your questions - they are good ones:
Is your mom keeping others awake in the home? YES. If she is up - she is constantly waking my dad or constantly talking or asking questions about the same thing or doing things that make a lot of noise at night or very early in the morning. Just the other night - (she was actually sleeping for a bit) she suddenly woke up and told my dad that someone was at the door. Startled out of a deep sleep - he checked because she would not settle until he did (we have a Ring - so checking from the Ring was not good enough to put her mind at ease). He struggled to get back to sleep. Last night was also not a good night. He didn't sleep well - probably because of reflecting and thinking about the state of things with mom. Also, if he is trying to catch a nap on the couch - it's the same thing - it is a constant thing where she will not let him sleep unless she is napping herself.

So...YES, her lack of sleep is bothersome. Dad is always tired and there are other things for him that I worry about too. I finally encouraged him to get himself checked out because I have always feared that he suffers from sleep apnea. He just recently did the sleep study (finally - two years of nagging him) and we have a follow up with his PCP - unfortunately not until June.

Mom doesn't complain necessarily... but her actions say otherwise - lots of sighing, being off balance, clearly fatigued - it is really a problem. The sleep, even if napping, to catch a couple of hours here or there - makes a huge difference in the way she functions and responds to her everyday tasks (which are not really much these days). But she is also struggling with some problems with her hand (she had surgery on the other hand years ago) and now this other hand is a problem. But she continues to push through the pain and she does tasks that will make things worse and you cannot get her to stop it. She often will not communicate (or maybe she cannot - not sure on this detail) that she is in pain - we have to simply read her behavior. So we have connected her behavioral dots and realized that this might also be contributing to a lack of sleep because of some pain. But again - she will not take Advil, which would help the pain and she could maybe sleep.

You make a great point about my dad- I have been focusing here as well because he is the full-time caregiver. I am home with them part-time and I will come stay for months at a time since I can work remotely. But I have a lot of anxiety overall because she is up before we are and typically once we are asleep - she's just up. Anything could happen - but thankfully so far...she stays home - there is no wondering away from home after hours or hours where she should be home.

Wow, it’s a difficult situation. Her behavior sounds like it would be quite disruptive to the family.

Unfortunately, based on what I have encountered, it’s not easily remedied. My dad, who has dementia, has much of the behavior you describe, but he takes several medications that help. Seroquel is one that has proved to be particularly helpful with agitation. It helps with sleep too. It’s a med that is usually prescribed off label, but a small dose is common, based on my experiences with dementia patients. My cousin, who had dementia, took it too at night. But, if your mom refuses meds…..that might not be an option in the home. A facility may have more luck getting her to take them. I found trained staff in Memory Care knew how to approach issues without much resistance. Resistance to bathing is another biggie…if you haven’t encountered it yet, you probably will. My dad has that now. Then comes bathroom issues…..struggling with proper cleanup or other odd behavior there.

I’m not sure how old your dad is, but caregiving full time for a person with substantial dementia is a huge undertaking. It’s mentally and physically draining. There are some people who do it longterm , but it boggles the mind. To me, when the behavior is so disruptive, it’s imperative to get substantial outside care to come into the home or arrange placement in a facility. Has your dad mentioned any plans or interest in doing either?

The trouble is that the disruptive behavior has to be monitored, and there’s no real way to prevent or curtail it. You can be supportive, kind and attentive, but at some point, the person with dementia can’t continue to run the show. The challenge is then managing their care….which may mean staying up all night, putting alarms on doors, child proofing the house, etc. My cousin who was a huge homebody who I never thought would wander, wheeled herself out into the parking lot of her assisted living facility and tried to get into cars with strangers! Totally out of character. So, I learned to expect anything. We had to move her to a Secure Memory Care facility.

I do sympathize, as I know how stressful it is to see a parent with cognitive decline. I’m dealing with it now. My mom and I have agreed. Right now, we are doing the care for my dad, with 2 sets of outside help coming into the home. And, I’m trying to find placement. He’s on a waiting list.

I hope you can find some solutions. It’s good to share and get support and all the help you can get. There are some videos on you tube by Teepa Snow about managing dementia behavior. They are helpful. Also, the book The 36 Hour Day provides guidance on care. Good luck with everything.!

Some medications can be crushed and mixed with pudding or applesauce or dissolved in hot tea or coffee.

@lkelley8
Have you thought of using warm milk, adding some powdered or liquid magnesium (like Calm), liquid melatonin added to drink, warm baths, dark room, white noise, soft music, nighttime audio books, herbal nighttime teas, etc.?

@trishaanderson Putting the pills in applesauce or pudding is usually a good idea, but, these days it can be dangerous to cut pills in half or crush to be put in something. And capsules should never be opened. All these “rules” have to do with patient safety. For example: I crush a 12-hour heart medication pill (to slow the heart) and it works too quickly. A 12-hour pill works in 4 hours rather than 12 or in 1 hour! And imagine the side effects! So, better safe than sorry!

@celia16 thank you for your reply. I am now listening to the 36 hour day and subscribed to the Teepa Youtube channel. I think Dad's still in denial a bit. It depends on the day for him, I think. I think he often believes that if she can just get sleep it'll be better? She has really good days sometimes but honestly now there are a string of bad days where she's like a robot and like she's seeing past us. She gets a lost look in her eyes that maybe only I see. Not sure if dad sees it. I think this is all really more than he wants to accept fully. They've been together like 60 years. I'm thinking about next steps but he is not there yet. I have to leave room for him to be ready. They are a unit and of course he doesn't want to see her upset or unhappy although he understands what is happening. It's all very tricky. I sense big events also shift things. A change happened with her dog a couple weeks ago that has impacted their daily schedule and all of a sudden a big shift in her cognition changed in the last two weeks.

Yes, that’s really tough. Your dad accepting her progression will be difficult. Back before my parents had significant health issues, I pleaded with them to plan….long term planning with an attorney and discussing longterm care. They refused multiple times. My brother asked them too. They finally did sign POAs, but that’s it. Everything I was dreading is happening. So, my brothers and I discussed the situation and have decided what will happen in the near future. So far my mom agrees.

I hope your dad will be able to discuss things soon. Maybe, he will read the 36 Hour Day too. It’s hard to focus on problem solving when you can’t get your sleep. Good luck with things.

@celia16 he is open. He sees it. He gets that deer in headlights look a lot because this is so much. I cannot imagine what he is thinking and how he's feeling. A transition has happened in the last two weeks. I think the change with her dog, which we are managing well, I think...has triggered the change perhaps. Unfortunately, we believe her stubbornness has indirectly contributed to the health issues with her dog. She had bad ear infections over the past year and a half due to mom bathing her and getting water in her ears with the way she does things. She'd refuse to listen to us about pouring water over the dogs head to rinse her and she was bathing her too much. As soon as she was a little dirty- she'd fully bathe her versus just maybe cleaning her paws or just bathing her from her neck down. As a result we think the infections were really bothersome and the dog would not eat a lot, maybe due to fatigue, not feeling well, nausea etc. Overactivity plus no food = low blood sugar and she recently started having seizures. Two of which mom saw and she was freaking out. She has not been the same since. She's literally been out of it since then- just two weeks ago.
We went out today for lunch. We ordered our meals together. We sat down. She popped up. Went to the counter to order food. She said she hadn't ordered anything but a drink and dessert. We told her we ordered a veggie burger for her but she said "I told you I didnt want that. " Which did not happen. She said she was okay with what we ordered because that's what she always gets at this restaurant. We attempted to intervene but she was so adamant so dad said let it go, we don't want to embarass her. Unfortunately, she had a large bill and they offered to allow her to pay by card but she refused and came back to the table a little frustrated. She returned. We thought she had ordered something else but later we realized she didn't want to use her card. Then her meal that we had originally ordered came. She ate it like nothing happened, never mentioned that she didn't want it. In fact, we mentioned about the other meal and she said, "i didn't say that". Instead, she kept saying that they never brought her fries but her burger doesn't come with fries, ours did but not hers. We explained this but she brought it up a few times.
She has also seemed very off balance when walking and always chooses to wear shoes that are not helpful. You cannot encourage her to change often tomes. Sometimes she will but not today. The off balance is a lot lately too. I am so frightened that a fall is in the near future. I often take her arm and wrap it in mine when we are out. She's often so focused on everything else around her and trying to talk to everyone, and pick out everything she sees...that I am so scared shes gonna fall on her face. I need to encourage dad take her arm too when hes walking with her. I think he's just trying to cope and that really this is all so surreal for him. I think he's probably not sleeping well in addition to her disruptions because shes not sleeping. Really sad today because I feel like we don't have a lot of time. I'm worries about both of them really.

I see what you mean. While it might be difficult and create a huge protest from her, I’d likely insist she have no care duties for any pet. No matter how she might disagree, you or your dad should ensure she isn’t alone with the pet or in charge of bathing, grooming, etc. If she were thinking clearly she would certainly not want any harm to the pets. Her awareness seems severely affected.

Maybe, your dad can hire someone to stay overnight to watch her, so he can sleep, unfortunately, dementia often means endless hours of repeating things, denying things they did or said, incessant rituals (possibly bathing the dog), and pacing….how old is she?