Nightly forays: What are your suggestions about nighttime activity?

Merry, Dear Merry - This is concerning, but very typical of some forms of dementia. Please, for your health and safety, and his, try to find an overnight caregiver who can accompany Dave on his nightly forays while you get some sleep. This can be a PCA, CNA, college student who is a "night owl" looking for extra cash. When my son-in-law's Mom was at this stage, Dad slept nights and his sister moved home and stayed up nights studying (her natural body clock) and slept in the afternoon.
One more thought - can his son arrange a Family and Medical Leave (FMLA) for a month to come and help? It would be great for them to spend a little time together before Dave cannot remember him, and put another person in the house to help you.
Also, talk to your doctor to see if there is a sleeping medication other than melatonin which is safe for him. He may also have a suggestion for caregivers.
With your own fragile health, neither of you can safely continue like this. I am holding my breath to hear what help you can find. The time has come to say "I can't do it alone."
Hugs and more hugs to both of you.
Sue

Hi, Merry @merpreb Tough stuff for sure! While they may not work for you, here are a couple things that helped me. My wife was on a two-hour pattern for years, but she’d never been a sound sleeper.

One of the early things I did was get a hospital bed for my wife. The rails kept her from wondering.

I placed old style store door bells on our doorframes so I’d hear the jingle if she opened certain doors. We didn’t have s security system at the time.

I found overnight support very hard to find and too expensive for our means. I hope you find it different in your area.

I ended up working closely with her neuro doc to adjust her daily meds regimen to help her with an initial longer sleep period, which I then took advantage of.

Strength, Courage, & Peace

Wow, thank you. I'll get some bells for sure. So far he hasn't shown any inclination to leave the house but if he's this active now I certainly anticipate it.
When he gets up I follow and I can't sleep because he's noisy. Our house is small so I don't know how it would work with another person here.
I start weaning off of prednisone this Monday and I know that at some point I'll be doing a face plant into a very deep sleep.
We still have about 10 days till his first neuro appt so the only meds he gets are the ones I give him, his vitamins and the pain pill I got for possible kidney stones.
I finally gave him 3 mgs of melatonin which is more than he usually takes and he slept great. So tonight I'll start with that until I can talk to his Dr.
Would you please explain to me more about 2 hr pattern.
I'm so glad that you wrote me, Scott.
Merry

Sue, I'm worried about this too. I'll be calling Monday for more medication help. I can't afford to pay anyone at this time because I have no idea how much his treatment will cost. I'm going to try something different tonight. I have received an amazon box of men's-pullups. We've talked about our lack of sleep and that I wanted him to try them tonight. I've spent all day, talking about our lack of sleep. Maybe it'll dos some good and maybe not.

Eric has a family in VA beach and to be honest I don't want him living here for any length of time. We'll have all day tomorrow to talk about what is possible and what is not and what kind of help he'll be able to give if at all.

I know that I can't do it all now, Sue. I'll take all the help that I can get. Change happened so quickly when I was in the hospital and I'm still recovering. It's been a week today.

I absolutely hate, hate, hate relying on or asking others for help but in order to do the best for Dave I have to. It's tough for me to ask for help. But I am. I'm too tired to drive so I ordered food and my brother-in-law picked it up for me. We are well stocked now.

Thank you
Merry

Our family can relate. It is really hard to find help. The kids have school and I work during the day so the night behaviors are really disruptive. Our neuro upped the melatonin to 10 mg plus 0.5 mg Clonazepam which helps. Not sure how long it will last or wear off but it did lengthen the time he does sleep. During the day, its a crap shoot - never know what your gonna get.

It is challenging handling uncooperative and potentially unsafe behavior, especially at night when frustrations can run high when everyone is trying to sleep. It sounds terrible, but maybe a locking room or something? Given the lack of reliable night care and beds at memory care facilities, it might be something more families are going to have to do out of necessity and safety.

cmiddlet-OMG, that does sound awful, locking someone in a room. That would allow much sleep, right?. I'm going to call his dr and see if he can help until he gets assessed in a little over a week.

Thank you so much for sharing part oof your journey. I want to do what is right for him but protect us too

Merry

Delta makes a touchless kitchen faucet that turns itself off after 2 minutes running. I used multiple rubber bands to make the hand lever impossible to turn, and made a big deal out of how modern and fun it was just to wave your hand or tap the top for on and off. That was after an over $1000 water bill (usual around $250). The water authority lady asked me if we had a swimming pool :(. I had the plumber come out about touchless in the bathroom, but before we could do that, things went south.
Same problem with night activity. I finally decided I couldn’t carry on with such sleep deprivation and moved to one of the kids’ rooms (all adults and moved out now). Then I had to start locking the door as he would come in to show me something. I felt bad at first doing that but I kept reminding myself (worst case scenario), if he set the house on fire, we had lots of smoke detectors and good house insurance. Fortunately, at that time, he didn’t want to leave the house at night, but I did look into door alarms that sound when opened from the inside (for child safety). Amazon has lots of choices, Home Depot had some, all easy to install.
Amazon sells a calendar clock that has the day, date, time AND the part of the day (morning, afternoon, evening). I put this in a place he would see it often and I think it really helped to keep him oriented and a prompt to go back to bed if showing “3:00 am morning”.
More early in this journey, I would tape signs around with lots of different colored highlighters, but they became part of the background “noise” and I don’t think he understood them.
It’s hard, good luck and keep on keeping on 😊

My goodness. Is your husband still waking up? I haven't had time as yet to read your posts and histories,, but I will.

I will most certainly look into all of these suggestions. Dave likes to drink out of the faucet. I know, I know. What are you gonna do?

Thank you for your help and understanding. I really really appreciate it.

Merry

Merry, my partner moved into our spare bedroom a few months ago. Occasionally I feel hurt that he did that, but after reading about many caregivers being awake half the night, I’m grateful for my peaceful sleep. Of course, I am lucky Ron hasn’t done anything dangerous or harmful during his nightly forays. If that happens at my home, I will be asking for advice too. Sleep is so important for us to keep going!

I have keyed deadbolt locks on all our outside doors. Then we put safety latches on kitchen doors and drawers where potentially dangerous things are stored and locks on rooms and closets that could be problematic. Yes, he can still make messes. but I can rest a little easier for a short time while he plunders.