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He doesn’t think I’m the “right” husband and sometimes wakes up demanding that I take him “home”. How does one calm him down? I’ve tried distracting him with questions that totally digresses. He’ll say things like, “this place looks eerily similar to our place.” He’ll also interrogate me. I’ve been at this for six months already and feel like his mental state is declining on a monthly basis. Any advice or things I should look for?
I am his full time caretaker and I have close friends who will watch him for me when I need a break from burning out.
Anything helps.

Thank you all so much for the advice and suggestions. I promise to do all those things.
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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 is not uncommon for a person with dementia to say they want to go home. This 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 best not to disagree with the person or try to reason with them about wanting to go home.

If he or she doesn't recognize their environment as 'home' at that moment, then for that moment, it isn't home. 

Try this instead:
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 a strange and unreasonable place.

Try this instead:
Reassure the person verbally, and possibly with arm touches or hand-holding 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.
What not to say to somebody with dementia

3. Try diverting the conversation
Keep a photograph album handy. Sometimes looking at pictures from their past and being given the chance to reminisce will ease feelings of anxiety. It might be best to avoid asking questions about the picture or the past, instead trying to make comments: 'That looks like Uncle Fred. Granny told me about the time he....'
Alternatively, you could try diverting them with food, music, or other activities, such as 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. 

Is the person with dementia happy or unhappy now? If they are unhappy, it may be possible to discover why. If they cannot tell you why, perhaps a member of the staff or another resident knows why.

Like other people, 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 trigger
********************
Here is a link to an article about what to do when a dementia sufferer no longer recognizes you as his spouse:
https://www.dementiauk.org/get-support/understanding-changes-in-behaviour/things-to-try-when-someone-with-dementia-stops-recognising-you/

Wishing you the best of luck with such a difficult situation. Be sure to get some respite time for YOU!
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Reply to lealonnie1
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SP2020 Jun 29, 2020
Thank you so much for the detailed response. I've implemented some of the things you suggested. So far, it has worked. A picture book was an amazing idea. I'm caring for my husband at home and it's just me.
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Having many gay friends and relatives does not make me an expert,, but may I suggest that you make certain you have your legal papers in order? Some states are more "gay" friendly than others, and some of my relatives have had problems with just the marriage liscense. Have your POAs, finances, etc in good legal standing. I have seen Pts and their spouses have problems with the families when things go south.. so protect both of you.
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SP2020 Jun 29, 2020
All in order. Thank you so much.
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My first thought is for his personal safety. While you're gathering information, make safety one of the goals. I'm sure you have had many great times in the home you share and it will be hard to look at things in a new light. But please help him by being as certain as you can that the home is a safe place for him.
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Reply to Mysteryshopper
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The best thing you can do is join a support group if there is one, or a forum, as many as you can. There is honestly no one answer, and it comes down to whatever works best for you.
Can tell you one thing that DOES NOT work and that is to argue, remind or say "We just talked about that; don't you remember". That causes the person, who already somewhere in that mix understands that he isn't thinking right, to become anxious and desperate. So when he says that the place looks eerily similar to your place just say "I think it does as well". Try to approach with gentle humor as much as you can.
Welcome to the forum. If you read around the subjects you will see just about every single one there is.
Were you already together when the dementia began? Before the dementia? Did you have moments when he understood that things were going wrong? My brother and I were able to discuss his Lewy's, the ways in which he saw the world differently.
You might enjoy Oliver Sacks. Studies the mind all his life and especially his later books where he discusses the "different world" that is dementia, he is interesting. He was also a gay man, who came out a lot later in life; interesting things to say on almost any subject.
Good luck and welcome.
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SP2020 Jun 29, 2020
Yes, we were already together when the dementia happened. We've been together for 20 years.
I will pick up the book by Oliver Sacks. Thank you so much.
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Sorry, I haven't any experience caring for a spouse but I've found a couple of articles that you might find helpful:

https://www.agingcare.com/articles/caring-for-a-loved-one-with-capgras-syndrome-197688.htm

https://www.agingcare.com/articles/dementia-intimacy-challenges-156319.htm

And if you've never heard of Teepa Snow I recommend you look her up on youtube, I think her advice is amazing - I'll link a video series that is a good beginners guide to dementia

https://www.youtube.com/playlist?list=PLVl8vTLjje8ESAEvpjVoVTEK-_6X2jTdl
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