Caregiver Sleep Disruptions and Threat of Wandering

Posted by cheryl16 @cheryl16, Jun 20 8:17am

My husband Gary came into my room at 5:30 AM dressed in a warm sweater to tell me he was going out to attend to his businesses. I told him it was too early in the morning and to go back to sleep. This really freaked me out and I got up and he was in the kitchen. He had forgotten his plan to go out. My gut tells me that he’s not going to start wandering outside but if he’s going to wake me up at 5:30 every morning, that will be a problem.
I’m going to start to try to keep him up later at night so he goes to bed at 9:30 or 10 instead of 7:45-8 and see if that helps. I hope this will prove to be an occasional not constant problem. I also ordered him an ID bracelet with my cell phone number in case he does get out. He never carries his cell phone but I have tracker fobs in his wallet and on his key chain.
I had moved to another bedroom a couple of months ago because he was waking up at 4:30 or so in the morning and opening drawers and putting on his clothes, waking me up. I put a sign on the door of my new room telling him I was sleeping there and not to wake me. He’s been pretty good about it up to now. He has come in to wake me from time to time but never before 7:30 or 8. I can deal with that, but not 5:30. I stay up to 11 or 12 at night because the time after his bedtime is my only consistent alone time. I can talk to my BFF who lives in California - 3 time zones away. I have struggled with insomnia over the years and finally have had it manageable up to now. This new wrinkle is very upsetting.
Please share any advice you may have or simply share if you’re dealing with this too.
Many thanks,
Sleepy Cheryl
New York City

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Becky, Volunteer Mentor | @becsbuddy | Jun 21 6:34pm

In reply to @jillsy "Kim Komando She has newsletters, podcasts, and is very interesting and entertaining." + (show)

@jillsy In the hospital we had ‘bed alarms.’ A piece of the alarm went across the bed under the sheets. As long as there was pressure on this ‘piece,’ the alarm was silent. When the patient tried to get out of bed and there is no more pressure, the alarm sounds loudly.
I’m not sure where the hospital bought theirs, but I’m sure Amazon has them!

1995victoria | @1995victoria | Jun 22 6:52am

There are bedside rugs with alarms, if he gets out of bed and stands on rug, alarm will go off. But I think your idea of keeping him up later at night so he doesn't get up early is good maybe have him watch tv or movie or work on a puzzle, but also the daylight is earlier these days, maybe get blackout shade for his windows. All the best.....

cheryl16 | @cheryl16 | Jun 22 7:51am

In reply to @1995victoria "There are bedside rugs with alarms, if he gets out of bed and stands on rug,..." + (show)

Thanks Victoria
I have been keeping him up later and he hasn’t awakened so early and woken me up again. We are taking our dog out together for nice sunset walks by the Hudson River and after that I can get him to stay up for about another hour or episode of Law and Order (his favorite). Your rug alarm is a nice suggestion perhaps for later if he really tries to leave the house.

1995victoria | @1995victoria | Jun 22 8:28am

Rug could be at front door.....so you'd be alerted if he decides to go out. All the best, being caregiver not easy.

cheryl16 | @cheryl16 | Jun 22 9:04am

Thanks Victoria,
That was my thinking too. The front door would be the best place.
No, it ain’t easy. Thanks for the support. It’s so helpful not to feel isolated.❤️

1995victoria | @1995victoria | Jun 23 7:34am

In reply to @cheryl16 "Thanks Victoria, That was my thinking too. The front door would be the best place. No,..." + (show)

I've been a family caregiver for most of lift, so I've learned a few tricks along the way. Now the trick is to learn to take care of myself.
All the best.....v

cheryl16 | @cheryl16 | Jun 23 8:08am

In reply to @1995victoria "I've been a family caregiver for most of lift, so I've learned a few tricks along..." + (show)

Victoria,
Thank you for sharing your wisdom and experience.
This is my first experience as a primary family caregiver.
I have been a social worker caring for adults with serious mental illness during my professional life. We have no children. I think my karma during this lifetime is taking care of adults. I have a steady yoga practice that helps me immensely take care of myself. However in the last four years I have had only 2 nights away from my husband. I need a vacation badly. Still haven’t figured out how to get one. How are you doing with self care? It’s the hardest, isn’t it.

jehjeh | @jehjeh | Jun 23 1:53pm

In reply to @cheryl16 "Victoria, Thank you for sharing your wisdom and experience. This is my first experience as a..." + (show)

@cheryl16
I, too have trouble with self care. 6 years or more (I've lost track) as a sole caregiver for my husband with dementia and many other health issues and I haven't been away for a night since. If I'm gone for more than 30-45 minutes he's convinced I'm not coming back. I cherish the days when he naps. That's when I call friends, read a book... have some quiet time. I do get to spend time in the garden, just go inside and check on him every 20 minutes or so. For me, self care involves catching moments here and there whenever I can. I hope you can find at least moments for yourself. (Also, housework is no longer a priority for me 🙂 )

cheryl16 | @cheryl16 | Jun 23 9:11pm

In reply to @jehjeh "@cheryl16 I, too have trouble with self care. 6 years or more (I've lost track) as..." + (show)

Thanks for sharing that. I know you are doing your best and I hope we both can find more opportunities for ourselves in the future.

jmg60 | @jmg60 | Jun 23 10:52pm

Hi,
my husband has not wandered out yet, but similarly has woken up at odd times and been confused about what he is doing - thinks he has a T time, etc. It has only happened a few times so far. My experience with these "one off's" is that they are not - they are a sign of progression and will likely become more frequent. I have a Ring front doorbell, and ring sensors on the doors. They chirp when the door is opened so if no one should be opening a door, you can hear it. I also moved into another bedroom because if I am not well rested - nothing will be easy for anyone the next day. Good move! If I need my husband to stay up I put on "Young Sheldon". He loves it. Good luck, keep taking care of YOU.