This is not my home

pwl · January 2

My wife periodically will ask when I'm taking her home. If I say that she is home she calls me a liar and everything else in the book. Becomes very nasty and rants incessantly all day. I've tried everything I can think of but when that starts nothing works Usually lasts a couple days with no sleep. I can handle the memory and processing issues bur the tirades are taking their toll. She was diagnosed 18 months ago and is in complete denial. Thinks she is just fine. Do I and the family confront her with the truth or let her eventually let her figure it out. She walked out at the original diagnosis and never went back. She tells people that she has overcome a memory problem and now is back to normal. Anybody have any thoughts?

Marta · January 2

Don’t argue with a person who has dementia. Their reasoner is broken.

She is not in denial- her brain is broken and she is unable to understand that. This is called anosognosia.

instead of telling her she IS home, ask questions about home and redirect to a different topic. She is probably looking for her childhood home.

jfkoc · January 2

It is hard but essential that you join your wife in her reality now.

There is a lot to learn and a good easy start is to read The 36 Hour Day. I also suggest reading everything on alz.com

Howaboutnow · January 2

I have an easier time redirecting my DH when he wants to go home, or go to his Mom’s when i say “she’s not home right now” or “it’s a long drive, we’ll do that tomorrow” or “what do you want to do when you go home?”…which can lead to a softer redirect than when i say “this is home. We’re right where we should be”. I thought my last response would be comforting, but he sees it as an untruth because in his mind he “knows” he’s not home and his agitation grows.

Your DW is not in denial. Her brain has changed. She cannot comprehend and understand her condition; she will never “figure it out”. In my opinion, confronting her will accomplish nothing. More likely, she will be suspicious of anyone involved in the confrontation. And even if she forgets the confrontation, she likely will hold the feelings she felt (betrayal, suspicion, distrust) for those in the confrontation. Feelings are held onto far longer than events.

I’m sorry, this is a point where we realize we are alone on this journey. Our partner no longer shares our reality and never will again. You will be challenged repeatedly to acknowledge and respond to absurdities and falsities in an effort to ease her emotional state in her new reality. I fail quite a bit at it….but i feel good, or at least not as crappy, when i succeed.

In our case, in the beginning of DH dementia, he knew something wasn’t right and he didn’t want anyone to know. He felt bad about himself. But if asked what was wrong he never would have been able to express it. His brain couldn’t process anymore. I perceived his emotion as “shame”…and that is unbearably hard for me to see and cruel for my LO to feel about himself. This disease is not their fault, it is not their doing. I wish there was some way to communicate that and have it “stick” with them during the early stages when they are semi-aware.

Over time, as more brain damage occurs, DH became less aware of “a change” in himself. BUT, unfortunately, he is perpetually anxious, confused, agitated. So for us, progression brings new hard challenges…not a pause or ease.

Again, I’m sorry you and your DW are facing this….you are together yet separate. It blows. When you can, find ways to comfort her reality rather than trying to force her to see “the truth”. Her mind is her truth forever now. 😏❤️

I hope you can lean on family or friends when you are at your wits end. Or here too,,,,we always understand. Living it every minute, this group has the scars and wisdom earned through experience.

wizmo · January 2

I get several variations on this from DW - take me home, I”m leaving, why don’t you go home. Attempts to reason or correct her are counterproductive. Sometimes taking her to the bedroom helps as she recognizes some possessions on the dresser as being in “her place”. Mostly I make some excuse why we cannot go now, promise to take her later, quickly try to change the subject. It often works for a while but comes back frequently along with other confused beliefs. Very tiring to hear the same delusions over and over.

Jeanne C. · January 2

I agree with all of the above. I think "home" is more a feeling of safety and comfort for a PWD. When my husband gets like this, I offer to take him tomorrow, put on some music he enjoys (the Amazon Beatles station is a miracle), and sit with him holding his hand if he allows it. Safety and comfort.

ghphotog · January 2

My DW has been wanting to "go home" for years now. She seems to understand when I say we are home and I don't have another home to take you to.

She hasn't recognized our marriage either for years and she also is in stage 6. She's in the dbl incontinence stage of 6 so possibly headed for 7 in a year or so I guess.

It's a new reality you have to try and live in now. I don't tell her anything is wrong, I just accept her as she is from one day to the next. All you can do.

Vitruvius · January 2

I also went through this with my DW, wanting to go home, or often "somewhere" that she could not describe. My only solution was to just go along with it and say let's go and we'd get in the car and I would drive around for a while and return "home". This usually worked...for a while. The drive would somehow satisfy her need to be somewhere else. It got to the point that some days I had to do this more than one time. It was exhausting and time consuming but I did what I could to lessen her anxiety.

It seems DW had an increasing problem with our home, in that she sort of knew she should be doing something there (her previous activities, hobbies, cooking, etc.) but couldn't figure out exactly what it was and this caused her anxiety, I am guessing, and made her think that another place would provide what she felt she was missing.

Medications may help reduce the delusions and her reactions. As others have noted, trying to reason with someone with dementia is very counterproductive.

pwl · January 2

Thanks for all the comments. Is there a time when it gets so bad that memory care in a facility is necessary? I hate the thought of that.

pwl · January 2

I can't get any meds for her because she sees no need to visit the Dr.

ghphotog · January 2

https://alzconnected.org/discussion/comment/193226#Comment_193226

Some can care for there LO from start to finish while many other's require placement at different times.

There is no shame admiting we can't do it alone anymore and placement is the only option. I'm currently touring different places now and getting information. It's very expensive, even a residential type MC.

As far as meds and doctor's visits go, my DW will go to the doctor without much trouble as long as they don't question her about her dementia. She will get very defensive. What I've done with our neuro is slip a note to the nurse before the doctor comes in and explain in the note everything I need to say in advance. That way the actual visit is a little less stressful for her but they still need to ask her memory questions, especially to evaluate her for medications.

tetwoman · January 2

https://alzconnected.org/discussion/comment/193204#Comment_193204

Your post was so beautifully written - I feel like you climbed right inside my head. The sadness, loneliness and uncertainty is sometimes overwhelming. Thank you for your words

ButterflyWings · January 3

Boy, this brings back memories. And it still happens sometimes. Just today, DH told me I should just go back to wherever I was supposed to be lol, that he was heading home soon anyway. Needed to do check on mom and dad or something like that. Both are long deceased.

Hang in there. We are all in the same leaky boat, rowing for dear life. Here are some links about the things the members have mentioned above.

https://dailycaring.com/6-ways-to-help-someone-who-doesnt-know-theyre-ill-anosognosia-in-dementia/

I also found an example of Teepa Snow's validation approach to delusions like, "this is not my home!" (Sorry, the short TikTok of mom packing up insisting she was leaving, would not embed) - but Teepa has several role plays to show how to diffuse, distract, and redirect rather than trying to use reason - which only increases the agitation.

Welcome to the best group that you never wanted to need. There is lots of experience and support here. You can do it.

Mimi50 · January 3

https://alzconnected.org/discussion/comment/193226#Comment_193226

Maybe she might need placement at MC facility. If you can’t get her to go to the doctor.

easy23 · January 3

https://alzconnected.org/discussion/comment/193226#Comment_193226

Can you get a telehealth appointment with a geriatric psychiatrist?

wizmo · January 3

https://alzconnected.org/discussion/comment/193226#Comment_193226

I tell DW sometimes the visit is for me, or it’s just a routine checkup. Also have a note prepared to give at reception so we don’t usually have an open discussion. Sometimes we can have a conversation separate from her, nurse takes her to different room to collect vitals etc while I meet with Dr. Also did one virtual/ telehealth appointment where Dr. only wanted to see her briefly then spent remaining 20 minutes with me to discuss behaviors and medications. I told DW I was interviewing a potential new doctor since her PCP recently retired and we need a new one.

Howaboutnow · January 3

@pwl In our case, after a diagnosis, i was able to message the Neuro, maybe even a couple years later, via their portal, explain DH’s symptoms, and a prescription was given. You may not need to do anything in person.

This is not my home

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