Moved in - Sundown syndrome

Hopeful1941

Hello. New member and looking for some advice. 

My mother will be 81 this year and was diagnosed with Alzheimer's in 2017. For the last few years, I've lived nearby and gone to her apartment to check in, make meals, meds, shopping, etc. I was over several times a day as needed, all while fixing up my temporary home so I can sell and get a bigger place for her to move in with me. Unfortunately, my mother's landlord gave us a 30-day eviction notice after 26 amicable years. I rushed necessary repairs and accommodations and moved her in. A new place is still very much needed, though I hate to do this to her again. Mom referred to her apartment as her Little Castle and has been absolutely devastated and stressed, crying every day for the last month. 

It's been 3 days since she's moved in, and it's been hard for us both. She does pretty well during the day and is usually easily reminded of what's going on. Before the Alz she had trouble staying asleep, but now for the last few years, it's been coupled with this sundown syndrome. We've tried several medications and right now she takes Trazodone as needed (most nights) a bit before bedtime. Sometimes it helps, sometimes the anxiety/stress/Alz completely overpowers it. 

Since being here, once late evening comes around, she starts feeling wound up and is ready "to go home." While she's easily reminded during the day, at night she gets upset - disbelieving and unable to grasp the truth that she is in a new home with me. Then it turns into an "episode" where she forgets where she is, who I am, loses all reason, and often her demeanor will shift to be combative or even hateful. She'll get a look in her eye that is very much not the Mom I know.

She will pack a bag and try to leave, or she'll tell me it's time for me to leave and to get out of her house. Trying to explain/remind that she is home, I am home, and it's the middle of the night just makes it worse.

This is where I'm at a loss. Her biggest fear is to be taken away and put in a hospital/senior center/etc. Over Christmas we stayed at my daughter's house and Mom didn't recognize any of us by nightfall and thought we had taken her away from her home and family, kept asking if she was allowed to go outside. When we said she would be home tomorrow, she told my daughter she would come back and "break her out." It took her weeks to recover after she was back home, and kept saying she didn't understand why "someone" would come and take her away and then bring her back. It was heartbreaking. I can't imagine this being the rest of her life.

Explaining and trying to reason either makes the combativeness much worse or, at best, seems completely lost on her while she cries and says she wants to go home. During these high-anxiety times at night, I hate to leave her feeling scared, alone, frustrated, and/or like she's not safe. I'm not sure how to comfort her when she feels like I'm a stranger in her house lying to her and keeping her hostage. We are both exhausted by the end of it.

We have an appointment with her neurologist coming up, but I would so appreciate any advice anybody has here to try and make this easier for her.

Thank you!

Rescue mom

Welcome, but sorry you have to be here.

Short answer: do not try to reason with her, do not argue that she is home, do not try to convince her. Her brain is broken, reasoning ability gets lost early. It just upsets them, and you. 

What many do is agree to “go home” but not right now. You say  “yes, OK we’ll go home…when the rain stops, or when the road is clear, or when the car is fixed..” whatever delaying tactic works for her, at the time.

 Then offer a snack or treat to distract her. Or say “look at the pretty bird outside,” or “aren’t the flowers pretty.” Assure her you love her, you’ll take care of her and won’t leave her. Usually they’ll forget, or let it go, soon.

Some people actually take them for a short ride, or quick walk outside, and come back saying “we’re home!” And that satisfies. 

This is a common problem, look through the earlier posts and you’ll find a lot of discussion and various solutions. It’s hard to not be rational or try to convince them, but Alzheimer’s is a brain disease. Their brain doesn’t work right anymore. Fibbing about going “later” for whatever reason is a kindness, to help prevent or slow, her upset times. Better to fib a little about why you can’t “go now” than to argue and be upset. It’s a kindness to her.

About the Christmas issues…it’s very common for PWDs to lose abilities/functions, when they’re in different surroundings. It may not be really “new,” it may be a place they’ve been a million times, but it’s new to them, in their condition.

Along those lines, 3 days is really not long for PWDs to get accustomed to a new place. It may take them a couple weeks, or more, to settle in better.

There are also meds that can help calm them, if it gets to that point. If she is seriously combative, she will probably benefit from something to help her calm down. You have to be sure and tell her doctor(s) that’s going on.

Hopeful1941

Thanks for the reply. 

It is often hard to distract/redirect her because she fixates and is extremely persistent, gets mad when she feels you aren't taking her seriously, etc., but this is definitely something we're working on. We had thought about taking walks but hadn't thought about jumping in the car. That's something worth trying.

I know 3 days is not long and I expect weeks or months before it gets better for her. I'm just looking for any and all things to try to make the transition a bit easier for her in the meantime. 

I'll be sure to look around the forum. Thanks again.

Waldorf

What has worked for me is to take DW for a ride ending up at McDonalds for an ice cream. Longer lines are even better now as it gives her time to calm down. By the time the ice cream is eaten she is eager to go home. The effort takes about a half hour but is well worth it.

Arrowhead

For over a year and a half, my wife tried to "go home" every day, several times a day. A couple of times she actually disappeared, and it took hours to find her. You don't want to do that; it's scary. I put alarms on the doors and that helped. Sometimes I would follow her in the car and let her walk a mile or two on her own, then bring her home. I finally realized that, although we have always had a fenced in yard, we never had gates. Now we have gates which are locked at all times. For a long time afterwards, she still tried to find a way out. I suggest finding a way to keep her from leaving because trying to talk her out of it will never work.

Janie9

I understand what you are going through, my father in law took two weeks to get adjusted to our house. We had to place alarms on the doors, even the door, where I store the medications.

He walks several times a day just around the block and is now sleeping .  He still gets lost in the house at night, but I placed extra lighting in the bathroom. It seemed to help.

We had a lot sleepless night until my father in law got into a routine.

glitterqueenscare

My experience with sundowners with my Mom was very similar.  Exact same situation with Trazadone, sometimes working sometimes not.  If felt sometimes like no one in the house could relax in the evening or sleep at night.

One day I mentioned this problem to another daughter who was dropping her Mom off to the adult day program we had two days a week. She took me aside and said to try giving my Mom a low dose (5mg) melatonin around 3:30 and another near when she goes to bed. It worked so good. It was just enough to take the edge off but never knocked her completely out where we felt like we were overdoing it.

I felt nervous about it so said something to her neurologist about it eventually and she said at that dose she wasn't worried about it, especially if it was working. I believe I also found information on it online talking about how an afternoon melatonin helped some suffering from sundowners. Good luck!