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My husband and I have tried everything to help my 90 yr old Alzheimer’s father from wandering and waking every hour at night. His dr. gave us a prescription for Trazadone (did not work). Used soothing music and aromatic scents (diffuser with lavender oil). CBD oil. Meletonine. Exercise him during the day. He does katnap during the morning because he does not sleep at night. We installed a camera to catch him. He wakes up throughout the night seeking the bathroom though he uses depends. Some night he strips himself. He can get to and use his bedside bathroom chair, sometimes he goes back to bed but most times begins to wander. We do not lock him in his room and he opens his bedroom door and wanders through the house turning on lights. When we get up to get him back to bed he says he doesn’t know what he is doing. Since we have a bell on his walker and the camera we hear him and jump up and tend to him and get him clothed (because he sometimes strips himself) take him to the restroom and guide him back to bed till the next hour. He does not have a UTI per doctor. Needless to say we are getting no sleep. We just don’t know what to do and feel this is how it’s going to be for him and us. No problem with him during the day. I know this is called sun downing and did my research but geez who can go on without sleep. In a months time he has slept a 4 hour stretch three times. I also have learned that everyone is different and what works for one person does not for another. I’m trying desperately for what may work for him. Just not there yet. Would appreciate any suggestions.

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There are several main reasons why a family places a LO in a care facility: wandering by the LO; no sleep for the caregiver; safety of the LO and family. Your dad exhibits all three of the reasons. Trazodone is mainly an anti-depressent drug but is often used off label for insomnia. Often, however, trazodone runs its course and is no longer effective for sleep. Other sleep aids may work but the problem is that the part of your dad's brain that controls his circadian clock has been damaged and nothing may work. He doesn't know night from day.

There are so many things that can go wrong with someone living with AD while still at home. Wandering is a critical issue. You've been very creative and have done some things that alert you to his getting up and that seems to work now. However, your alerts are after the fact, meaning he's already up and wandering before you're aware. There's a chance he may want to go outside some night at 3 AM. Locking the exterior doors may seem like the solution but it didn't deter my wife. She went out the window! Obviously this is a safety concern. Another could be that he turns on the stove burners and walks away. This is an issue not just for your LO but for the whole family. My wife turned all the burners of the stove on ignoring a plastic container sitting on one burner. And certainly I don't have to comment on your loss of sleep. Many of your concerns are the premise of the book “The 36 Hour Day”. Although there are only 24 hrs in a day, being a caregiver for someone with AD seems to require much more. The book is considered the bible of caregiving. You can find it at your library or purchase a copy from Amazon.

MC facilities these days can be very attractive, comfortable places. The staff is trained in AD care and certainly you will feel a sense of relief. I would suggest touring some.
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Juneaz99 Jan 3, 2021
Thank you for your information. Very helpful.
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Unfortunately he needs supervision during the night now.

One option, hire a over night caregiver. The carer would be responsible for attending to Dad during the night and getting him back to bed. This will get expensive.

Another option, is one of you changes your sleep schedule and stays up all night, or you alternate. Just as people do with a young baby. It does not make sense for both of you to have your sleep disturbed.

This is one of the situations that for some families leads to a parent being placed in a facility where 24/7 is available.

Can you arrange for a week or two of respite care? That would allow you and your hubby to catch up on your sleep and look at your options for moving forward when well rested. I know I do not make good decisions when I am exhausted.

I can understand why Dad is looking to use the toilet during the night, instead of wetting his Depends. I am quite certain (with no scientific proof) that the part of our unconscious brain that wakes us up during the night to go pee, is very different from the part of our brain that gives us the same message during the day.

Your sleep is important
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I would speak with the doctor about the trazadone. There are other medications to try. As with all things such as this, even with chronic mental illness, it is a matter of trying different medications to see what will work. Sometimes it is a cocktail of medications that includes low dose anti depressants. Problem is that things that work with sleep and relaxation can have bad repercussions on ability to safely maneuver in the world without a fall. Speak with the doctor. At the point he or she says we have nothing else to try I think you are going to have to consider placement for your own sanity. I am so sorry you are going through this and it sounds as though you are doing a lot. Be certain he eats meals earlier in the day so the digestive progess is not at work at bedtime. Just so sorry and cannot imagine another answer. I hope others can.
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disgustedtoo Jan 4, 2021
Personally I am not a big fan of medications, but sometimes it is necessary, not only for the person, but for those who care for him/her. We had to use an anti-anxiety with mom when she had her first UTI in MC. It was the lowest dose. Yes, there can be increased falls due to using these medications - the doc who Rxed this refused to renew it. Mom had a few tumbles in her time at MC, but NEVER when on the medication. I had to argue with the doc to get the Rx, only as needed, and for the most part, we didn't need it again. Subsequent UTIs resulted in nighttime bedwetting, not the severe sun-downing she had during the first episode.

If nothing can be found to help him sleep longer periods through the night, safe-guarding everything you can think of in the house would be the first step. Locking up cleaning products, unsafe utensils, etc and ensuring there's no access to outside (keyed deadbolt), removing stove controls and/or locking the controls (microwaves have had this feature a long time, newer stoves, washers, dryers also have these now), etc to protect him (and you) from doing unsafe things, why not just let him wander? Sure, he strips. Doesn't hurt anything. If he eliminates outside the bathroom, that would be a problem, but wandering about the house and turning on lights doesn't hurt anything. It might disturb your sleep, so if that continues to be an issue, trying medications until you find something that works might be the only solution other than finding a place for him.

If nothing else works, it might be best to find a safe place for him. Wandering within MC units may be acceptable, but if he wanders into other's rooms, they will want something (Rx) to help prevent this as well. Thankfully my mother never really had an issue sleeping, so that's about all I can suggest. Sleep is important for all, so hoping you can find a good solution!
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I’d argue against memory care. Staff might be trained to deal with wanderers but have any of you observed how the staff actually handle wanderers at night? I have. My husband was in an MC for two months and I requested to be there at night time on 3 nights at the beginning to observe how staff handled wanderers. Evening shift was VERY skimpy - 2 aides for 15 residents. No need to have more since most residents slept at the time. I observed the caregivers also dozed off too. For wanderers, the aides let them roam in their underwear/diaper and then take them back to the rooms after a while. I sat in the dark observing what happened and took my husband out after two months. There were other egregious problems too that made me decide to take my husband home.

Now, back to the poster’s question. I agree with the suggestion to hire a night caregiver to watch the father so that you and your husband can sleep. It is also MUCH cheaper to keep him at home. Your husband is a saint to share this responsibility during the day because it is a lot of work.

RE medicine, my husband is on Seroquel to treat sundowning and wandering. It works fine so far, but I am ready to switch him to another drug if needed. Keep looking for the right medicine.

Good luck.
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PaulBern Jan 3, 2021
FANTASTIC further details by "Worriedspouse" and I too was VERY upset by the irresponsible conduct and/or lack of action by night staff!
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Wandering behavior with dementia is certainly a big problem. You have already been quite resourceful in tackling it. You might find some further helpful suggestions in the book "Dementia and Wandering Behavior"--especially Chapter 7. The authors are Nina M. Silverstein, Gerald Flaherty, Terri Salmons Tobin (published by Springer, 2002). I should think either Amazon or www.abebooks.com would have a copy.

You are quite right that everyone is different. My wife, now 11 years into Alzheimer's and age 84 did wander a little, but she now sleeps well. Everyone is unique. You need to work out shift arrangements so that all caregivers get enough sleep. Getting in someone at home to be a night sitter makes a lot of sense if you can afford it financially. I agree with the advice that carehomes seldom look after wanderers well. Home care make sense, but you do need to look after yourselves, too.

Love and Prayer
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Part of the attraction of memory care or the dementia units of a nursing home are that they have locked units - the residents cannot get outside when they wander - and they have at least some staff overnight to attend to someone who is wandering. Frankly, letting someone wander around in the facility at night when they are restless and want to be up seems like a fine solution - but at home with only two of you and no hired caregivers, it's an unsustainable situation. My mother had Parkinson's dementia and she'd be up in the night but at the nursing home where she was they were able to talk with her, make sure she was safe and eventually get her back to bed. I was thankful that she had that kind of care.
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Your father may have Sundowner's Syndrome - the confusion and anxiety some seniors get as day progresses into evening. Usually consistent routines, turning on more lights in the evening, and anti-anxiety medications can help to calm this down. Being "up" most of the evening is NOT Sundowner's Syndrome but a disruption of the circadian cycle, or a sleep problem. Your father may have an enlarged prostate that is causing him urinary urges; have this evaluated and treated by a urologist. He may also be getting too much sleep in his daytime naps so his "sleep needs" are met during the day. Limiting naps to less 20 minutes may help. Also getting your father into the sun during the day to help him stay on a correct "day-night" schedule may help. As an RN, we used to give Benadryl at night for those with difficulty falling asleep. You can try this - with doctor's approval - or ask for a consult to a sleep specialist who can prescribe medications to help with his episodes of wakefulness during the night. If this seems like too many specialists, medications, and adjustments... some folks have found it useful to hire a sitter during the night who will help him with toileting and returning back to bed (so you can get a good night's sleep).
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My father sometimes wanders now, and was waking several times a nite like yours. Since medical marijuana is legal in this state, our doc suggested we try equal parts CBD and indica heavy THC. It’s in capsule form and he takes two at bedtime. My dad has 24/7 help so is safe getting in and out of bed or chairs as needed. He now sleeps 4-5 hours at a time which has helped him and his caregivers. The only side effect is he gets hungry, but b/c he has cancer too, that’s been a welcomed event. The CBD is calming as well, so Dad isn’t worried about an event he’s missing or stressing over something else to the point he can’t sleep. We also had Dad stay up more in the daytime and exercise, but his nites were restless. For us, this has been a great experience. Good luck- no sleep is tough on everyone!
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Im not going to be much help because my 96 yr old Dad is also up all night and he sleeps off and on all day.

He has a Cathiter and gets a UTI every 2-3 months so be thankful your Dad is not Catherized.

My Dad always wants a snack at night like a muffin and milk anywhere from 10 PM to Midnight.

I think it would be safer for him and you would be able to get a little more sleep, if you lock him in his room at night so he can't wonder thru the house.

Tell your Dad every night after he's in bed, that his bedroom door will be locked til in the morning.

At night before bed give him a snack and or you might try some warm milk or warm tea called sleepy time.

Prayers

My Dad gets a 3 mg of Melatonin but he doesn't take any other Sleep Rx's.
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disgustedtoo Jan 4, 2021
Locking someone in their room is likely not a good answer. In the event of emergency, it could be disastrous and could result in legal issues. ANY kind of restraint is discouraged.
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How long are you going to permit sleep deprivation?

Does your H think it's time for a facility for your father?
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