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We have only been dealing with AD for a few months and it is progressing rapidly. She does not seem to have any issue remembering others but continues to alter my identity from husband, boyfriend or deceased father. Currently using Therapeutic Fibs to move her back to my correct identity. Looking for help or tips to manage over the long term.

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I had the same issues with my wife. She had Parkinsons disease for over 20 years and developed this dementia about 5 years ago. Her Neurologist said it was Capgras Syndrome where the patient's main issue is not knowing their primary caregiver. Occasionally she would know me as her husband but the majority of the time she thought I was someone else. I hate to tell you this but there isn't much you can do. I was told by her doctors that I should just go along with whatever or whoever she thought I was because the stress of correcting her accelerates the dementia. It's a tough thing to do, but it's best for her. My wife passed 6 months ago and I sort of take comfort in thinking that maybe she knows me now. The 5 years we dealt with this were brutal, frustrating and sad. We were married for 49 years but the last 5 years were the absolute hardest. Sorry, I don't have any better advice for you. I just kept trying to convince myself that somewhere in her heart she knew me and that's what kind of kept me going. It's tough, I know. Just hang in there. I feel for you.
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Reply to Jbird58
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Davenport Nov 27, 2023
I agree with you (and your docs) that going along with whatever our people think is the best way to go 'because the stress of correcting [them] accelerates the dementia'.

Avoiding stress for them is #1.

Thank you for all you did for her, and for contributing your experience and suggestions. It's very, very important. I hope you're doing better now, getting some much-needed rest and a bit of serenity knowing you did well by your wife.
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She may not know you as an Old man, but as the young man she married. Her father, because you maybe the age she last saw him. Boyfriend, she is back when she is 18 and not married yet. I would not bother correcting her. This is what her mind is telling her.

I was out with my Mom. Ran into a woman she knew. Woman asked Mom how her kids were. The look my Mom gave the woman was "what!". Then she said to the woman..."I have no children". Not sure who Mom thought I was.
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Reply to JoAnn29
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I had that problem with my husband, now deceased. For the last year he was alive, he kept asking where was his wife. When I told him, I am your wife, he would not acknowledge that. I showed him our 11 x 14 marriage studio picture, our anniversary pictures, our travel pictures, NO, that's not you. I consistently told him I was much older now, like him, and my hair was now white, but I am the one in the pictures. No, this is not you. I learned to quickly change the subject, all along with a big lump in my throat. I had a broken heart, but I had read enough about the alzheimers disease that I understood it was the sickness he was talking, not talking to me. I cried, but learned not to make myself sick. It was just the disease he was talking with. Be brave, hold your head up high, be thankful you had good years with him or her. And my marriage was super good, a loving husband, kind, considerate, helpful, loving, smart and intelligent, then only a like a little boy with no knowledge of what lies ahead. It was hard to accept, but I soon learned it was the disease talking, not him. Best wishes.
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Reply to JosAgingCare
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Davenport Nov 27, 2023
I admire your wisdom, that you intuited to 'simply' change the subject. It takes and builds so much strength in loved ones/caregivers to do this work. Thank you for sharing your experience and hope.
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None at all. And it isn't a fib to move her back to who you are to her. Just don't expect it to "stick" and this will more than likely spread to others soon enough. Often dementia patients will confabulate to PRETEND to recognize people that they do not. But when they THINK they recognize a close loved one it does get confused as to what their actual standing is. As Oliver Sacks observed, they have a whole world, it just isn't OUR world. See what works best. Gentle correction is fine, but will likely do nothing, and sometimes adds to distress. I recommend you watch some Teepa Snow videos on talking to members of the family suffering from dementia.
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Reply to AlvaDeer
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What is AD? (Advanced dementia?)

Why do you need to correct her? If it is advanced dementia, you flow with where she is.

The focus and key when comunicating with a person inflicted with dementia is to keep them calm. You tell them whatever works. You do not argue.

Saying you are currently using "Therapeutic Fibs" tells me you are (perhaps) in your head. Flow in present time. Relax. She may know you one minute and not the next. If this gets to be too much for you, take a break. It must be heart wrenching at times for you - depending on how she responds / interacts with you.

You must learn to get over being truthful as if she didn't have advanced dementia. She does. You talk / communicate with her is ways that work FOR HER.

Take care of your own feelings.
If she has advanced dementia, she will not remember from moment to moment, day to day.

Let go of expectations.
Cry.
Find support / network
Do things you enjoy.
Research Teepa Snow - do her webinars. They will help you a lot.

If she is at home, get caregivers in.
If she is in a facility, make time for you to do things that bring you some joy (gardening, golf, museums, painting, boating).

Gena / Touch Matters
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AliBoBali Nov 17, 2023
AD = Alzheimer's Disease, I'm guessing
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My grandfather had that problem with not remembering my grandmother. He kept asking her if she was married... 'cuz he wanted to marry her. She may remember you as the younger you. Maybe show her pictures of the two of you together and make captions to explain the relationship, place, activity...
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Reply to Taarna
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My college roommate's dad would tell his wife about his wife who left him because he was ill. It's heartbreaking when your loved ones are at this stage. And to be honest, there isn't much that can be done as far as I've seen.
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My mother recognizes me maybe a few times a year. I had to ask her PSWs to stop saying “Your daughter Ana is here.” because it started too many fights. Especially if she thought she was a child again. Now they just tell her a visitor is on her way in and I test the waters to see who my mother thinks I am, and play along.

Maybe if you ask about her husband and discuss him, something might click.

My mother knows my cousins who visit a visit a few times each year. She occasionally calls my husband by name. It’s all so odd.
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Thanks for all the responses. My biggest issue is that she starts getting worried that her husband isn't there and she thinks she hasn't heard from him for "days". I'm thankful for Uber that lets the guy staying with her leave and I get to return home. So far it is working. Our children are helping out as much as they can giving me an opportunity to have some time away from the home.
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Llamalover47 Nov 30, 2023
rickinokc: Thank you for your update.
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This is most likely what is called Cap Gras syndrome after the physician who first identified it. It's also sometimes referred to as the "Imposter Syndrome". The person afflicted with this does not recognize a loved one and thinks that the person "pretending" to be the LO is an imposter. Strange in that the non recognition is usually confined to one or two loved ones (or even a pet). My wife had this. It came and went a couple of times. Lasted about six weeks the first time, about three weeks the second time. I googled it. It can last for days, weeks or months. Sometimes my wife thought I was four different people. One day she took me aside (recognizing me as me) and whispered to me that there was a man in the house that was trying to steal my identity. He was driving my car, eating my food and sleeping in my bed. I just had to reassure her that I was going to be on guard and take care of it. Sometimes her descriptions of these "other imposters" were very funny. Hopefully, this won't last too long for you. I sympathize since it is very disconcerting.
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Davenport Nov 27, 2023
Thank you for sharing your experience; it's so helpful and important here. We help and support one another. It's comforting to hear that it can wax and wane, too; but maybe it's only a comfort to 'us' on the outside. Perspective is critical in living with Alzheimer's or dementia, and all of its nuanced variations.

It's interesting to me that 'Cap Gras Syndrome' can also extend to pets.
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