My mother is 81 and has dementia. We try and take her out at least four times a week. Her long-term memory is ok but her short-term memory is getting bad. She’s been having sundowners when she has those. She wants to get up and leave because she says she’s not home. She believes she’s at a relatives house or at her childhood home. We’re trying to agree with her because when we don’t she gets angry but, she then tries to get up and leave. The only thing that’s in our favor is that she has limited mobility. I just want to know if it’s helpful to put signs up in the house so she knows that she’s at home? We try and point out in the house some of her favorite things hung on the wall etc. but she just thinks that somebody brought stuff there that looks like hers to trick her, it’s just so sad to see.
Medication for agitation and anxiety might be required. Talk to her doctor.
She is in MC, where she needs to be, that is her new home, she doesn't even remember her prior homes.
Ask the doctor about some meds for the sundowner times, it will help her.
Very sorry.
It may not be the best idea to take her out so often. People with dementia need as much routine as possible, Taking her out 4x a week may make you feel better, but ultimately can hurt an elder with dementia further.
My grandmother-in-law had the same issue. Her daughter would take her out to eat multiple times a week (from assisted living). Before long, it became clear this wasn’t helping. She began worrying that “the hotel” wouldn’t let her back in. She thought she had been out of town, and then couldn’t remember where her bathroom was. What was two hours to us, was two weeks to her.
And yes, a mild anti-anxiety med would be worth doing.
What Mom probably wants is that *feeling* of home. That feeling of SAFETY.
To me, the 'I want to go home' is a late day safety mechanism.
The inbuilt drive to return to the nest.
Mental fatigue has set in. They are DONE mentally with the day. Tired, but maybe not yet ready for sleep. Try other soothing, non-mental activities. Eg
Washing hands in warm water.
Gentle music.
Getting cosy in an armchair with a soft doll or bear may even work for some.
We had signs: A's bathroom, A's bedroom etc on the doors, big font and red print
Advice
Here are some ways family members and primary carers can approach the difficult question, 'What do I say to someone with dementia who wants to go home?'
It's not uncommon for a person with dementia to say they want to go home. This may be caused by time-shifting or general confusion, and can be distressing for everyone.
Below are a few considerations on what to say to someone in this situation who wants to go home.
5 things to remember when someone with dementia is asking to go home
1. Avoid arguing about whether they are already ‘home'
For a person with dementia, the term 'home' may describe something more than the place they currently live. Often when a person with dementia asks to go home it refers to the sense of ’home’ rather than home itself.
‘Home’ may represent memories of a time or place that was comfortable and secure and where they felt relaxed and happier. It could also be an indefinable place that may not physically exist.
It’s usually best not to try to reason or disagree with the person about where their home is.
If they don't recognise their environment as 'home' at that moment, then for that moment, it isn't home.
Advice
What not to say to somebody with dementia
Try to understand and acknowledge the feelings behind the wish to go home. Find out where 'home' is for them - it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past.
Often people with dementia describe 'home' as a pleasant, peaceful or idyllic place where they were happy. They could be encouraged to talk about why they were happy there. This can give an idea as to what they might need to feel better.
2. Reassure them of their safety
The desire to go home is probably the same desire anyone would have if we found ourselves in an unfamiliar place.
Reassure the person verbally, and possibly with arm touches or handholding if this feels appropriate. Let the person know that they are safe.
It may help to provide reassurance that the person is still cared about. They may be living somewhere different from where they lived before, and need to know they’re cared for.
3. Try diverting the conversation
Keep a photograph album handy. This could be a physical book or photos on a tablet or smartphone. Sometimes looking at pictures from the past and being given the chance to reminisce will ease the person’s feelings of anxiety.
It might be best to avoid asking questions about the pictures or the past, instead trying to make comments: 'That looks like Uncle Fred. Granny told me about the time he....'
Alternatively, you could try shifting the person's focus from home to something else - such as food, music, or other activities, such as going for a walk.
4. Establish whether or not they are feeling unhappy or lonely
A person with dementia may want to 'go home' because of feelings of anxiety, insecurity, depression or fear.
Think about whether the person with dementia is happy or unhappy when they mention going home. If they are unhappy, it may be possible to discover why.
Like anyone, someone with dementia may act out of character to the people closest to them as a result of a bad mood or bad day.
5. Keep a log of when they are asking to go home
Certain times of the day might be worse than others. What seems to be the common denominator about these times? Is it near meal times (and would a snack perhaps help)? Is it during times when the environment is noisier than usual? Is it later in the day and possibly due to ‘sundowning’?
If you see a pattern, you can take steps to lessen or avoid some of the triggers.
The issue is that they're not referring to their current home, they are thinking about their childhood home, the one that's in their long-term memory -- which is the last memories to go.
Before my mom passed away (Aug. 2023) she would occasionally argue with me and my Pop. She was NEVER combative when she was healthy; she had always been kind and compassionate. The longer I lived with my mom, I realized, when she insisted on getting up and going "someplace," she most often had to go to the bathroom or was experiencing something uncomfortable/painful. If you mom is able, you might try stopping at the bathroom anytime she wants to "go home." After that, you may be able to redirect her to a different place in the house that feels familiar.
You are doing VERY HARD work. I will say a prayer for you. ~ Vanessa
she says, "I want to go home." you say "Of course you have a wonderful home. What do you want for dinner?"
she says, "I want to go home." you say, Home is wonderful, what do you think the weather will be tomorrow?
she says, "I want my Mom, Where is my mother." you say, You have a wonderful mother. She is visiting others now. What do you want to do tomorrow?
We also found giving 200 mg of magnesium glycinate at 4:00 pm or 3:30 pm or even 2:00 pm
would help reduce the sundowners. It doesn't totally prevent it, but it helps.
Then we would give the other 200 mg at 6:00 or 7:00 pm and she would sleep through the night with this regimen.
I would avoid a whole lot of taking her other places. She is going to be better in one place, I think.
My brother died before he could pass into the latter stages of his Lewy's dementia, and he was aware that his hallucinations, and the things he saw in the world didn't match what we "normals" saw. He once said "I am not glad to know that how I see the world is all messed up, but I am glad to know that there's a reason I see it all wrong". We often talked about his diagnosis. He didn't have the normal denial many with dementia have, and would likely have passed quickly into that stage had he lives.
It is truly very sad. I wouldn't add to the confusion with a bunch of signs. The way you are handling it now sounds right.
She says almost every day that she's going home when her dad comes to pick her up.
When that is their frame of reference, then no, they're not "home".
It's sad for sure but it's the nature of the beast.
I haven't tried to convince my mother that she's at home. I just tell her that today and tonight she's going to stay with me at my house and she accepts it in the moment.
Is she living with you or you with her so that neither you nor she is actuallyleaving in the evening? You could say something about liking it here--let's stay longer.
Try to make her feel loved and secure when she talks about home. Ask her questions about her home if she’s able to talk. Put your arm around her, maybe look at old pictures. I’ve read that it can be a sign of loneliness and even fear when they start talking about home.
If you suddenly didn’t recognize where you were or the people around you, your first thought would also be “I want to go home.”
You can’t convince her she is home. That leads to confusion or even argument. Just try and reassure her and then try distraction. Give her a treat or listen to music, tv, go outside if weather is nice etc.
My wife, on occasions, did not recognize me as her husband. When she was feeling fine, I asked her to write a note stating that I am her husband. Whenever in trouble, I showed her the note, but she argued that it was not her handwriting.
Here is an excerpt from my book "Dementia Care Companion" which deals with your question:
“I Want to Go Home”
Over time, as it becomes harder to find the right words, the patient will rely increasingly on word substitutions. Sometimes, a word is just meant as a placeholder in a sentence, like saying “Give me my pants” when they want their shoes. At other times, it is the feeling behind the words, rather than their literal meaning, that is intended, for example, “I want to go home.”
When the patient says that they want to go home, this is not always due to confusion. Rather, the patient may be expressing a desire for love, peace, comfort, and security that they associate with home. When the patient feels anxious and isolated, when they feel that no one understands them, that everyone is reprimanding them, bossing them around, or asking them to do the impossible, “I want to go home” expresses a need for escape to a familiar shelter, a longing for the warmth and security that they associate with home.
· Do not try to convince the patient that they are already home. Instead, look for the sentiment behind the words “I want to go home.”
· Apply the techniques you’d use to get to the root cause of behavioral problems. Look for unmet needs, environmental issues, and problems with patient-caregiver interactions.
· Are the patient’s basic needs being met? Is the patient hungry, thirsty, or in pain? Are they bored? Do they have an infection? Are they constipated, or do they need to go to the bathroom?
· Is the environment comfortable? Is it too warm or too cold, too bright or too dark, too noisy, or crowded?
· Are patient-caregiver interactions thoughtful and comforting? Does the patient feel safe? Do they feel loved, cared for, and accepted? Are they comforted with hugs, caresses, companionship, and words of encouragement?
· Go with the flow and redirect. Say something like, “Okay, we’ll go soon,” and then distract the patient by doing something pleasant that takes their mind off of wanting to go home.
It is EXCELLENT that you are 'trying to agree with her' understanding (from experience) that this only further frustrates and upsets her.
If she were my mother,
Alarms________________________
I would restrict the option of her getting up and leaving the house somehow - use ringers / bells when she gets up and starts moving around ... definitely have a buzzer or something on the (front) door if she gets that far.
* You need to be able to be alerted to her movements.
Another / addition option_________________
Instead of telling her she is home or agreeing with her, you could also try saying "we will go as soon as the car is repaired ... as soon as we get gas in the car ... as soon as we 'pack' you up. Anything to say "we are preparing to leave ... after we xxx'). This way, she will know something is in the works.
Additionally, you can say: "I know you want to go home" so she understands that she is heard and not ignored. "I know this is hard for you." "We want you to be home, too."
As she will not remember, you can repeat this as needed.
However, re-directing is needed / encouraged. Redirect her attention to something else as soon as you can, while acknowledging her frustration - and letting her know you are 'working on it' / on her side supporting her.
You might ask MD about meditation to calm her down.
The key is to keep her calm - addressing her fears and confusion / changing brain chemistry - in ways she understands. As you know, you need to put yourself is her shoes (and brain) and respond in ways she feels heard and that her needs are addressed.
Be aware of tone of voice, how to comfort her (take her hand, make good eye contact).
Do google / watch Teepa Snow You Tubes, sign up for her webinars (I did training for two years w/her-webinars), buy her books. She is one of the country's leading experts.
Gena / Touch Matters