Would having a night caregiver help an Alzheimer's patient sleep more/better at night?

POA_236

Would having a night caregiver help an Alzheimer's patient sleep more/better at night?

My mother's circadian rhythm is completely messed up. What I want to accomplish is to get my mother onto a normal sleep schedule (say 11pm to 9 or 10am).

My mother is up a lot of the night sitting on the side of the bed thinking about going to the bathroom (she has a diaper), plus sleeping during the day interferes with getting out of the house for activities that my father wants to go to (he's not allowed to drive, so caregiver needs to drive him plus he wants to be with my mom for everything).

We are already supplementing with melatonin which has helped a little, but doesn't keep her asleep at night, it just keeps her from falling fast asleep during the day.

I've been tempted to try sleep meds, but my understanding is that they
1. Can create a fall risk
2. Don't contribute to the kind of quality sleep you'd need for your brain to heal at night
3. Can make dementia worse.
(please correct me if I'm wrong)

My father is stressed at the cost of the daytime caregiving already, and night time caregiving would add another $2K/week (they can afford it - that's not the issue - but these large numbers stress him out). So I have hesitated to get a night-time caregiver because I'm not sure it's worth it. She doesn't wander, she is just sitting up on the side of the bed looking around, fiddling with her diaper (bed has chucks, waterproof covering, and plastic on the floor, so that's ok), or reading a magazine.

My question is whether having a caregiver at night to help her to the bathroom (1-4 times between midnight and 5am) would actually help her sleep better or if she's simply inherently awake during that time regardless of whether anyone is helping her back to bed. Does anyone have experience where adding a night-caregiver helped shift someone's sleep schedule?

Anonymousjpl123

HI @POA_236,

Welcome to the forum. Sorry for your reason to be here but glad you found it - lots of solid, excellent first hand info here. I don’t know if extra care will help with sleeping, but it would likely help with stress - hers, your dads, and yours. The reason is that all that waking up at night takes a huge toll, adding an extra layer of exhaustion to an already super difficult situation.

I don’t know that sleeping pills make dementia worse (others will know more) but my mom takes melatonin and it helps. How is your mom’s mood otherwise? I ask because seroquel helped my mom’s mood enormously but she was very anxious and agitated.

As for the money, maybe if you explained to your dad that it could improve her quality of life he would feel better. If you can afford it, to my mind, whatever helps is absolutely worth it. I just posted that after I went ballistic because my moms MC made me get her an aide (because of the cost), after they said it was no longer necessary I kept one part time because my mom seemed to really bond with her. It’s helping.

my point is I would trust your instinct: I do think extra help helps, and if you can swing it, is worth a try. This is an utterly exhausting disease and everyone deserves as much care as we can find.

pjasso

I'm sorry that this is challenging. I'm wondering what her doctor might considering prescribing, whether, like Anonymousjpl123 said helped her mother. If there is an underlying cause of her sleeplessness, even it it is sundowning, something other than a sleeping pill might be the answer, such as an anti-anxiety medication, or maybe the doctor could prescribe a safe sleep aid that wouldn't cause dizziness etc. I would start that conversation if you have a primary physician that will work with you on this. Good luck, and if you find a solution, please share back with the group.

H1235

Good ideas and advice above. I’m also wondering about her daytime schedule. If she was woke at a regular (reasonable) time each day, and napping was limited to some extent, would she sleep better during the night. If it is sundowning this may not make much difference.

Grenah

My mother has always had issues with insomnia. Dementia and out of sync circadian cycles don't help. We try to keep the napping to a minimum. Melatonin did not help her at all and for some it makes it worse. Might have to play around with medications. A night person would be helpful. Just be sure you introduce them before they start so she doesn't get frightened when someone she doesn't know shows up in the middle of the night.

JulietteBee

A night time caretaker will not be able to keep an insomniac asleep. The most they would be doing is providing your mom with companionship, and someone to talk to in the dead of night.

POA_236

Anonjpl123: " How is your mom’s mood otherwise?"

That's complicated. I think she is frustrated with one of the caregivers - she will ask me to get her ready in the morning because the caregiver "scolds" her. I think she is frustrated with her situation. She is probably depressed some of the time. However, she's always been depressed. She had post-partum depression, and my father let my brother live in their house as an adult for 15-20 years while he (my brother) refused to speak to her. I know that was really hard for her. She can be "in a mood" when she is low on sleep and refuse to cooperate. But it's not like she was super-cooperative when she was younger. She's actually nicer now and complains less than she used to, but I think she's trying to push back against every just giving her orders. It's kinda hard to blame her.

However, she's not agitated except when this one caregiver lectures her. At night, while she'll sometimes talk about spiders/snakes in her room (spiders legit, snakes not), she doesn't seem agitated while she's up at night. in fact, I kind of think it's her quiet me-time. The time where no one lectures her or tells her she has to stand or sit or get changed or exercise. And except when I'm there doing "night-duty", no one is even telling her to go back to sleep. When I go in to help her, she's very cooperative and calm and tells me she wants to go to the bathroom.

H1235: "I’m also wondering about her daytime schedule." - Sleeps best between 4am/5am and 11am right now, but it's not a deep sleep. She gets up around 10am-noon depending on how fast asleep she is and what the caregivers decide. Goes out to church every day, sometimes around noon, sometimes 5pm. Sometimes the caregivers try to keep her up, sometimes they let her nap. When she naps, could be a solid 2-3 hour nap. (Used to be this nap was around 2-5pm and she was solidily asleep and impossible to wake. With melatonin, her naps are less deep.) They put her to bed around 10pm. Sometimes she falls asleep, sometimes she stays up and reads. I've asked them to take her to the bathroom before they leave around midnight unless she's asleep. Regardless of whether she goes or not, she seems to perk up at 1am and be up until 4-5am when my brother comes in, takes her to the bathroom and she goes to sleep.

The only times she's slept through the night are when we have a new caregiver who doesn't give her enough water. This has pros and cons - the pro is her sleeping, the con is that she seems to be much much worse cognitively without water. But without drinking a lot, she doesn't need to pee in the night. She is on mirabegron for incontinence which helps in the day, but makes her more aware of the urge to pee at night

We did try the Purewick, but she started trying to change the wicks herself and not getting them back in correctly. We were going through 2-3 wicks a night with nothing to show for it, so I put it away.

Occasionally one of the caregivers will get her out for a full day of errands. Soemtimes she sleeps well after that, but nowadays, not necessarily.

POA_236

Regarding melatonin, we have her on time-release melatonin gummies given around 8-9pm, and melatonin sleep patches, plus some assorted "sleep gummies" with things like magnesium and ashwaghanda.

What brands are you using? How much made a difference?

One thing I've heard is that you konw you have too much melatonin when you have vivid dreams. I have no reason to believe that she's there yet - the snakes comments preceded the melatonin and haven't really changed in nature (this is related to a memory from when she was 9). The other thing I've heard is that Alz. diagnosis is preceded by a messed up circadian rhythm - for years - and that is true for her. She's gone to bed at 4am for probably more than a decade, plus when I was a kid she stayed up late while taking classes.

POA_236

BTW: My dad sleeps through the night. Sometimes he wakes up to help her go to the bathroom and then goes right back to sleep. Sometimes he doesn't even remember waking up to do it. He is not necessarily bothered by the situation at night because it makes him feel like he's helping her. During the day, he doesn't mind as long as it doesn't interfere with going to church, although he's lightened up on trying to go every day.

I don't think he'd see the expenditure as useful because he says he's there to help her (of course, we're all worried about him falling trying to help her, but he doesn't believe he will fall - that's dementia for you).

It bothers me because I believe that sleep is health, so I'm convinced this is just not helping her brain. But that comes back to the question - will she sleep better with a caregiver putting her back to bed? If so, then great, but if it just is what it is, then maybe I should put an armchair by her bed and let her have her peaceful me-time.

POA_236

https://alzconnected.org/discussion/comment/275290#Comment_275290

This is exactly what I'm wondering…………. And is it insomnia or just having to go to the bathroom multiple times at night? or are they linked? You're awake so your body is processing food/liquid keeping you up to go pee…..

JulietteBee

Well, having to go pee is a normal occurrence. Insomnia is the pathology that causes her not to be able to fall back asleep after going to the bathroom.

Insomnia has 3 sub-types.

1. Unable to fall asleep
2. Unable to stay asleep
3. Wake up for whatever reason and unable to fall back asleep

Sadly, I do not see how a nighttime caregiver will be able to resolve that issue.

harshedbuzz

@POA_236

A nighttime aide could potentially help you sleep and in the bigger picture is the more critical piece. If the aide dealt with the night wakings and engaged her, you could sleep.

I'm not a fan of melatonin; it's great for jet lag and <might> be useful short-term (a week or so) with sleep hygiene to establish a sleep schedule but other it's a nope for me. Mom's pulmo/sleep specialist really doesn't like it but did OK her to try 5mg. She (no dementia) had a nightmare about someone in her room and found herself 3 houses down the street in the middle of the night. Gummies aren't great because the active ingredient is typically sprayed on making precision in dosing unlikely.

If she's having trouble getting back to sleep after a nighttime bathroom visit, perhaps supervision could make this less stimulating and make it easier to sleep. A friend had a mom who had this behavior. Mom would usually wake 3-ish and think it was morning. What friend did was install a motion detector alarm (silent), connected to her phone, and meet mom in her room, she'd escort mom to the bathroom by nightlight and settle her back into bed. Keeping lights off and using soft voices acted as a prompt that this was sleep time.

Depending on her health conditions, you may be able to improve the overnight peeing. If she's on a once-daily diuretic, ask if she could taking it in the morning. Do dinner at least 4 hours before bedtime. Limit liquids as well. In the hours before bed, have mom elevate her legs to drain any fluid off them so her body makes less urine after she goes to bed.

Meds from a geri psych could help.

HTH-
HB

H1235

If she is awake during the night and your dad is sleeping and there is no one else in the house, is she safe? I would worry she might decide to go for a walk or fry some bacon. This might be more than just sleep issue, but a safety issue.

April23

I have used nighttime caregivers on occasion when my dad was in the hospital and for a night or two when he would return home. Sometimes he slept, sometimes he was up all night. I had them for safety more than for help with sleep, although they certainly tried to settle him when they were there. If it’s not a hardship financially, I would try it and see if you see improvement.

POA_236

https://alzconnected.org/discussion/comment/275313#Comment_275313

Yes. We have her hemmed into her side of the bed with a portopotty. She is only able to get past it when either my father or my brother move it.

For better or for worse, she is not very mobile. If she actually went for a walk of her own volition, it'd be a miracle. The worst that would happen is she'd make it to the living room and turn on the TV.

POA_236

harshedbuzz said "have mom elevate her legs to drain any fluid off them so her body makes less urine after she goes to bed."

This is great suggestion. I had not thought of that.

POA_236

https://alzconnected.org/discussion/comment/275311#Comment_275311

One of the things that I've read is that Alzheimer's patients have little to no melatonin production and that's why they have a messed up sleep cycle. Even at the doses we're giving her, she isn't having nightmares. She makes no reports of dreams at all. The weirdest comments she's made are seeing a cat out of the corner of her eye (and she asked if I saw it too) and snakes wrapped around the portopotty - a story which preceded us giving her melatonin and has not gotten any more vivid or urgent - some days she mentions them being "wrapped around the portopotty", some days she knows that she saw them as a kid at Lake George.

Since melatonin has other health benefits including making amyloid beta more soluable (and in theory easier to clear out at night) as well as immune system benefits, I think it's probably good to supplement as long as there are no nightmares. Perhaps the fact that she's not having nightmares or any sort of vivid dreams indicates how low her melatonin levels are :( My husband has vivid dreams on just 3mg.

Thanks for the tip regarding sprayed on gummies. I was not aware of that. I wanted to reduce the sugar intake anyways. I'll see if I can find a decent tasting tablet.