Sundowning and wanting to go home

Family is forever

I know that wanting to go home is fairly common amount our LO with dementia. My mother is no exception. However, things have gotten extremely difficult at night (around 6pm on the nose). For most of the day my mother does fairly well with a few bumps in the road here and there, but over the last several weeks her sundowning has become unbearable. She has a constant desire to "go home" to her childhood residence because she thinks her father needs her help. He passed away in 1985. 

We have tried everything that I have read: removing noises and distractions, telling fiblets, turning on all the lights in the house, trying to change the topic, inquiring about what is making her anxious or scared, medications from her neurologist, and playing soothing music. None of it seems to work and I am really starting to loose my mind. If she is not too combative I will take her for a ride to get ice cream (her favorite thing in the whole world) but once we get back she insists that it is time to go home. None of it seems to work and I am mentally and physically exhausted. 

When I ask mom about how she is feeling and where "home" is to her she tells me it is her childhood home over 2.5 hours from our residence. She has not lived in that residence for 60 years and it breaks my heart to see the panic and sadness on her face every night. I will try to distract her by asking about the home and what her favorite thing was but it only works for a minute at best.  If anyone has any other suggestions on how to deal with a constant need to "go home", please let me know. 

jfkoc

See if this "Teepa" has something useful for you

https://www.youtube.com/watch?v=BLReoWyOehQ

sandwichone123

Family, this sounds very difficult. One family on here decreased the sundowning with bright lighting in the evening so it didn't look like it was getting dark.

As far as her actual requests to go home, sometimes it's helpful to provide "yes, as soon as we..." answers. Like this: mom wants to go home, you respond with "yes, we will go as soon as..." your mother tells us it's ok...your sister gets home, Dad gets off work, they finish working on the road construction...whatever you think will fit into her current mindset as a reason we can't go right now.

PhillyJoe

We're pretty much in the same boat, and it's absolutely exhausting -- you're not alone! I came here looking for the same type of advice so, unfortunately, I don't have any magical advice for you; you've done everything we've tried (some days it works, some days it doesn't).

Fingers crossed that someone will have some help for us both!

PhillyJoe

One of the most frustrating/exhausting things is the repetition. We can often get her calmed down, but it may only last for five minutes (sometimes less) and we have to go through the whole thing all over again.

It's absolutely maddening!

Martin Robbins

Ask your doctor about olanzapine (Zyprexa).

My mother who passed recently was having visual hallucinations of poeple, mainly two little boys.  She fretted over them off and on for years.  Finally, however, she was in a state of despair over their well being.  She would also sometimes be in a genuine panic, looking for a baby.  I worried for her physical health, such was the degree of her distress.

This prompted me to get on the Internet and begin a search for a suitable medication.  I found olanzapine (Zyprexa), which worked like a charm.  She would occasionally still ask about the children, or her mother, and I would tell her I took care of everything.  "You know I always take care of everything," I would tell her.  I could see the relief instantly.

This was an "off label" use for olanzapine.  And, there is a warning about giving olanzapine to people with dementia.  It's in the same drug class as quetiapine (Seroquel).  In our case, the risk was far outweighed by the reward.

live in daughter

Family, my heart goes out to you and your Mom. My Mom had the same pattern of wanting to go home. It usually started at 3:00 pm and sometimes lasted till bedtime. The nights can seem to go on forever.

Used various approaches as you have- scented diffuser, lights all on upon evening coming, etc. We would ask where she wanted to go and she would tell us about her childhood home. We would ask what she would do once she got home. All in order to help distract from thought of going home.

 We would make up stories to say we could go in the morning but not at night. We said we had to arrange for the movers and then we would start asking her what she wanted to take with her. Sometimes we would pack up some things.

We also would have her talk with relatives on the phone to help distract.

I have to say this did not always stop the asking to go home. We did find some relief for our Mom by using Risperidone. Her episodes seemed to lessen. We also used Xanax as needed. I know everyone is different but it helps to know what has helped others.

Hope this helps.

Cantrip

New to the board. My mum just turned 91 and has been exhibiting symptoms for a few years but mild. Last weekend it’s like we fell off a Cliff. So agitated saying we have to get out of here (her home for 47 years). And all through the day and night, let’s go home, I need to go see ma (passed 20 years ago). When I ask her where home is she can’t verbalize or just goes you know. When I say this is our home, she says no it’s no, not really and I’ll show her all the pictures on the wall and her needlepoints. I tell you, I moved back into my parents home about 25 years ago to help my father who had broken his spine. I took care of him for 11 years before he passed away. I thought that was hard. This is a million times worse. I feel like a knife goes thru my heart every time she asks to go home.

SusanB-dil

FamilyForever - do check sandwichone post... I totally agree with the fiblets. I know you've tried some - and 'this' whole thing is just so flippin' frustrating!! but also check with doc, if the medication is not working, perhaps a different one? or a different med with a different dose?

Hi Cantrip - Welcome to 'here', but sorry for the reason - just wanted to say 'yeah', it hurts!! But also - do tell her doc about this sudden change. Maybe check for any UTI, which can really wreak havoc. If not that, perhaps a change in meds might be appropriate.

mommyandme (m&m)

Cantrip, welcome but so sorry. You’ve posted on a thread that was started in Oct 2022. If you start your own current thread you may get some more views and responses. The one thing I thought about is if this is a sudden heightened anxiety it might be worth getting her checked for a “silent” UTI or some other medical reason. A sudden shift sometimes points to a medical issue. If not that, meds might help and can be given without the zombie effects of some. Sometimes meds improve the quality of life for patients and caregivers alike.

Please keep coming back with any and all things you and yours deal with.

Cantrip

Thank you M & M. I thought maybe that was the issue. Yes to UTI but still the same after antibiotic regimen.