My wife has Parkinson's dementia and lives in a delusion sometimes that I'm not her spouse. Is it possible she has Capgras Syndrome?

JBird58
I feel you. And I understand completely how hard it is not to get frustrated sometimes.
I have a very similar problem with my DH. Sadly I have never received difinitive diagnosis as to what type of dementia he has. His started after 2 very servere "overt heptic encephelopathy" episodes. both left him in a coma and his breathing forced them to place him on a ventilator both times. He was only down 4 days with one and about 6 with the other but the anesthetic/paralytic applied to keep someone under while intubated is extremely damaging to people and the result in his case was some permanent brain damage.

He was not all that great with peoples names before all this often calling people another name that was close to or kinda sorta like their actual name.
It is really fruatrating as I am not sure if he knows who I am and remembers our life together but cannot remember my name our what the deal is. I do know that when he wants something ( and granted he is an impatient man moreso now that he is disabled this way.) He calls for Barbara. Barbara is his youngest sister.
He has not been close with his family since about 10 years ago when his mom died. His relationship with all of them was a bit strained anyways since he is a tell it like he sees it kinda guy. This was not well received especially by his sisters.
When we were together and going to family functions they were not particularly warm and friendly with me. They mostly kept me at arms length and were often rude or ignored me.
When we finally stopped going to every Christmas day get together no one was happier than I was. I relished those Xmas days we spent at home eating cold cut trays left from my work party and the candy and cookies we got from neighbors and friends. We always had some Seagrams and or Jack and lots of good hot coffee and we could afford presents for each other when we did not spend it all on his family, who rarely showed appreciation for the effort it took to buy all that and for all their kids as well.

ANYWAYS You can imagine how my hair would stand on end when he would insist on calling me Barbara or worse his other sister Debbie Sue.
Good grief I hate it so bad.
BUT I wanted him to be happy and I found making an issue out of it stressed him out too much making it worse and his cognitive ability suffered when this happened.
One day he said in frustration to me when I told him I was not his sister WELL then who the h*ll are you! I felt like crying but instead I said I am Andrea - your wife. we have been together for 25 years. He looked puzzled so i went into our office where we had a picture of the 2 of us together and pulled it down and showed it to him. A light went on and I could tell he made the connection.
It is very strange sometimes I could swear he is calling me his sisters name in an attempt to make me mad because a few times he wanted something and I could not drop what i was doing to go fetch it ( he is bedridden) He kept yelling calling me Barbara - then finally when he got real frustrated because I was not running to do what he asked he called me by my name.
This has happened more than once . Because i have never been able to talk to a doctor directly and ask them questions about what form of dementia he has or is it not dementia but brain damage - I have no way of knowing if this is a thing to manipulate and aggravate me or if it is purely unintentional.
Either way I really understand how that feels when the person who you were closest to - loved with all your heart- suddenly acts like they do not know who you are. It makes me mad at times and always hurts even though I know he is not forgetting me on purpose - it is not a game with him I don't think.
I know correcting the delusion or whatever is not helpful and even when I would get mad and yell I am not your sister I am your wife his ability to remember my name and who I am did not last long.

I try to remember who he was and be patient with this other guy.

You are dealing with two disorders here, first the dementia and secondly the Parkinson's. With dementia is it very possible she doesn't remember you, I have seen it so many times in my life. My friends mom had dementia and she could remember everyone in the family except for my friend who was the one that did everything for her. I can't tell you why she separated herself from this daughter mentally, it is just what happened. While it is difficult to do don't take it personally, and whatever you do, don't try press to hard, show a picture or say do you remember when to her, if she doesn't respond the way you want, try to accept that and move on. With Parkinson's there is a part of the mind that has delusions, there are times that my husband things that someone is there that is not, he will talk as if his brother is standing in the room and there is nobody there. Many times when someone has both Parkinson's and Dementia they are living a life that is not their own, and they don't have rational thoughts. While it is difficult for us to grasp, imagine all that you used to know is different and you see things that are not there. Go about loving and doing things for your wife and accept that it is not her as you remember her, but a new part of both of your lives that must be rationalized with in your own mind. Best wishes in your very challenging world

Why won't showing recent photos of the two of your relieve her anxieties about who you are? And "remember when we went...? or did...?" along with photos from those activities.

It is hard when a disease process removes memories of loved ones, especially of the spouse. Trying to correct her only leads to frustration for you and her. Eventually, she will have problems identifying other people. Keep being the kind, loving person you are, Keeping her safe and healthy are the goals for this time in her life. If you are reasonably healthy and happy together, don't worry so much about her recognizing the correct "name" for you or your relationship.

Since this issue frustrates you, please consider talking to a therapist. You may need to discover new techniques to help you cope this your spouse's disease/symptoms.

Jbird58: How very frustrating this is for you and I am sorry. Even though your wife has Parkinson's, perhaps a medication assessment is in order. Prayers sent.

My husband has Alzheimers and very often does not know who I am and points to a neighbors house and tells me that that's where he lives and his wife is there and he wants to "go home". Then I ask him to stay and he tells me that wouldn't be right since his wife is in the other house! So I ask him if I am his girlfriend and he says no, he doesn't know who I am. I've learned now to just go along with him and it does not hurt my feelings, everything now is just to get him to feel safe and secure, and every day is different and some more difficult than others, you have to just try your best and find quick answers that works for his mind. The journey is long and difficult and don't beat yourself up if you cannot always find a good response to any outbursts.

Dear Jbird58, I am so sorry you are going through this. I think the most horrific thing about these illnesses that rob our loved ones of memory is forgetting the person they began a lifelong love with. During my husband's transfer from dementia to Alzheimer's, at 3 pm every day he would ask me to help him---he wanted me to take him 190 miles away to see his wife and son. At first I always corrected him, showed him our wedding pictures, he acknowledged it was he in the picture, but not me. I showed him all the studio pictures of our intervening years, "no, that's not you." Showed him our travel pictures, No, it's not you. So, I would ask him, "who am I then if I am not your wife?" The answer, "my friend". This happened every day for about 3 years. I finally gave up correcting him and considered the debilitating disease he had made him forget me. Remember her and all the loving things that happened during your marriage years, forget she forgot you today, and tomorrow, remember the good days, the love you made, maybe the family you made, your courtship, your babies if any, and keep the love you have for her in your heart. Best wishes.

I’ve guessing that you have read Oliver Sacks’ book ‘Hallucinations’. If you haven’t, get hold of a copy (it should be in your library system). Yes, it is very possible, and I don’t think there is much you can do about it. Perhaps you could think of a family member whose face she won’t remember, say that you are him and then talk about how wonderful ‘your husband was’. It might at least make you feel better to know that her memories are loving. Sympathy and best wishes, Margaret

JBird, I’m sorry you’re in this situation. Perhaps when your wife expresses confusion about who you are or angrily denies that you are her husband, you could soothingly reply “I am your very good friend, and I enjoy being here with you today”. Perhaps the terms ‘good friend’ and ‘enjoy’ can reach her brain and make her happier or less afraid in the moment?

It it might be worth a try. Have courage, and be good to yourself. We are pulling for you.

My husband had capgras. He new everyone but me and friends and family were unable to convince him otherwise. A tumor In the frontal area of his brain was the cause. He actually called the police One time to report I was an intruder in his house. You will not get her to believe who you are as arguing is fruitless and causes further anxiety so don’t even try. You could try calling her from your cell phone to your home phone it may give you both a little comfort for a time.
If I called my husband on the phone he new me but that became heartbreaking After a while also as he could not understand why I couldn’t come and get him.
This went on for many months and eventually he started giving me some identities eg, old high school classmate etc
As time went on he didn’t believe this was his home and tried to “go home”
It was a very tough time for us and there isn’t anything anyone can do to make it better.A reprieve that gave me some respite was Adult Day Health facility a couple of days a week.
Good Luck and God Bless as you travel this very difficult road .

Lewy Body Dementia is commonly associated with Parkinson’s disease and the behavioral challenges and hallucinations are quite different from Alzheimer’s.

Twinning hallucinations can be difficult to accept, but are common with LBD. For my dad, there are times when simply acknowledging his hallucinations helps calm him. More often the hallucinations persist despite drugs and constant reassurance and redirection. In nearly thee years, never once has contradicting dad’s hallucinations been helpful. (One relative who insists on doing so has been incorporated into dad’s horrors as her evil twin, complete with a new name and concerns for the well-being of the lost original.) It’s heartbreaking.

The Lewy Body Dementia Association website is lbda.org

If books suit you better than internet browsing, there are dozens to chose from.

“A Caregiver’s Guide to Lewy Body Dementia” by Helen Buell Whitworth and James Whitworth, is fairly comprehensive. It’s readable, not written like a medical text.

”Other Mes: A Caregiver’s Experience with Lewy Body Dementia” by Jim Adams is a personal perspective.

It’s important to talk to an informed neurologist because a diagnosis of LBD will impact the treatment of other medical issues.

LBD patients have severe - sometimes permanent - adverse reactions to many commonly used drugs, from simple OTCs like Benadryl, to anti-psychotics, to general anesthesia.

I wish you peaceful moments in your caregiving journey.

My mom was diagnosed by a neurologist with dementia with 2 visits for long term care purposes. Dementia comes in various forms. I noticed that she showed symptoms of Lewy body dementia such as hallucinations, some shuffling of her feet. I read all I could about Lewy body dementia which helped me to understand that the hallucinations were just part of her dementia. Correction doesn't help and results in the frustration of both parties. I suggest reading as much as you can about Lewy body dementia and/or Parkinson's to help you as much as your wife. Best wishes to you.

My LO has Lewy Body disease which is a sibling condition to Parkinson’s. There is a lot of overlap because the main difference is location of the effected parts of the brain. My dad has had hallucinations due to Lewy Body while being pretty functional in other ways. When he started Aricept the hallucinations ended, at least for now. They tried him in something for tremor but one side effect was that it could make hallucinations worse. His tremor isn’t that bad so he’s not taking that. There are many drugs that work differently in Lewy than other conditions. It’s worth looking up and talking to your doctor if you think it’s worth considering.

Absolutely go along with whomever she thinks you are.

You have already seen that it does no good and actually makes matters worse trying to convince her elsewise.

Make a game out of it and be whomever she wants you to be and get her to reminisce about the giid times snd they'll be all about the two of you anyway.

I'd like to add a suggestion. I was diagnosed with Early Onset Alz 4 and a half yrs ago. I came upon this website shortly after I received my diagnosis. I would encourage family members to come and read about ALZ and other dementias, as well as how Parkinson's can be another enemy sitting in the brain. I've told my adult children and DW about the site to see what strategies work best with those of us with ALZ. I know the adult children have given a couple of glances, but I don't think they've done a lot. They have been very helpful taking care of me as I no longer drive. One still lives at home, the other is in his last year of college and will be relocating shortly after graduation.
My DW has a full plate of 16-19 hour days as a Teacher. She'll be retiring at the end of this school year. I continue to do what I can to lighten the load, but there are a lot of things I used to do but can no longer safely manage any longer. Our youngest is 13, and very willing to do anything she can for me or mom without complaint. I'm blessed to have them caring for me. I hope many readers will benefit from my drivel of comments.
Also look for a local Forgetful Friends Group. My DW and I have learned a lot from others facing the battle of ALZ and other types of
dementias.

I am a firm believer in two options - choose what you feel is best for you. Some people say "just go along with the flow, agree with them" which is fine but those beliefs can irritate and upset you horribly even though they are not aware of their dementia. Not everyone can let such things just slide off their shoulders. In the second option, as the caretaker, you have feelings and emotions and it upsets you horribly. If you could not stop this in a "peaceful" way and it was really getting to me, I know I would explode and really tell them off in such a way and degree as to scare them enough to shut up. I would not give in - I'd have my say and if they get upset, so what? They have dementia and you are normal and you have the right to live in a state of peace without their behaviors destroying you. You will get the rage out of your mind and body which should be helpful to you - you are doing the caring and need all the help you can get. Do NOT let them get away with anything. It may sound cruel, but aren't YOU more important? I think you are. You are still normal - so keep that normal state and don't let them take it from you.

My husband is 70 and has Parkinson's and mild cognitive impairment, the cognitive issues were the first symptom I saw over 4 years ago. He sees multiple twins of me in our house as well and asks about the people cooking meals, paying the bills and taxes, and shopping although it's just the two of us and I've done these tasks for years while working full-time and raising our children. I don't correct him when he sees multiple "me's" but will respond that "it's just me" if he wants to discuss it. While I was making breakfast today, he was standing in a trance obviously bothered by something. He commented that he was baffled. I said that we were at home and I was making breakfast. Several times this year he's not sure who is pictured in the wedding photo on my dresser so we'll talk through it for an hour and eventually he's relieved. If I propose stashing the photo so it doesn't cause him anxiety, he doesn't want me to do so. We both participated in zoom support groups this week for the first time, one for the caregiver and one for the spouse. I've bought several books to read on Parkinson's and also read comments on the sponsored Parkinson's sites on Facebook to learn what others are experiencing. I'm taking him to 3-4 exercise classes at the gym, we also walk and he'll ride his bicycle with a neighbor or by himself but I'm tracking his location on the cell phone. It is definitely on-the-job training as someone mentioned.

dementia can make people think you are someone you are not one time and the next you are who you are. My dad would often recognize his wife (my mom) as "his mother" then the next time it would be his wife.  You just have to go along with what they are saying, its "their world" you now have to go to in order to keep them happy.  Don't argue because "you will NOT win".  And why make her situation worse by trying to correct her.  I know its hard to hear that you are "someone else" in her mind but that's just what dementia does.  its a terrible disease.  Maybe talk with a counselor for yourself to help you deal with this or like on this site, vent and ask for ideas/suggestions or just to have someone listen that has gone thru the same thing.  Maybe she is thinking of other "men" that were in her life as friends, brothers, uncles, etc.......do NOT take it personal.......I wish you luck in this, and if you have to cry, do it later when you get home......talk to someone who has gone thru it.

I don't have any brilliant answers for you, just to commiserate and say that dementia has got to be THE most frustrating, aggravating disorder that ever was. Trying to deal with a person who suffers from it is truly impossible, and a thankless job, for the most part.

You're only human, so accept the fact that you're doing the best you can and may have times when you DO blow up out of frustration. Try leaving the room to regroup and then have another go at it.

Wishing you the best of luck dealing with such a tough situation. Hugs and prayers sent your way

It doesn't really matter if you have a formal name for the mental confusion or not. It exists and the 'symptoms' are that she doesn't recognize you. You can NOT argue with a broken brain, regardless what you call the disease or illness, so go along with being whoever you are today. This is a no win argument to try and convince her otherwise. What she believes is what her brain allows her to believe.

Save arguments and anger for someone else who can fight a fair fight with you, if you must. Save your energy where she is concerned.

Jbird,

My mom has Parkinson’s disease so I truly empathize with you. It is a dreadful disease. Watching those we love deteriorate is heartbreaking.

Mom hasn’t experienced any dementia. This must be so freakin exasperating for you.

Don’t get too upset with yourself for getting upset. It happens.

There isn’t anyone living in this world that doesn’t experience frustration when they are faced with a challenging situation that won’t change.

If you are like me, it is the knowing that it’s a permanent condition that is gut wrenching.

I can stick it out in tough situations if there is an end in sight. Parkinson’s disease has no end in sight. It’s a progressive disease without a cure.

I am so very sorry that you are struggling with this. I don’t know the answer because I haven’t experienced it. I would rely on what others who have experience say.

The closest I have come is my grandfather who was larger than life to me and did not recognize me when he was dying in the hospital.

I was devastated. I was a teenager and knew nothing about someone not being able to recognize others and it was horribly unsettling for me. I wish someone had prepared me that grandpa wasn’t himself.

Years later, my godmother with Alzheimer’s disease did my recognize me when I visited her in the nursing home.

I was older then and understood that my godmother had a disease so it wasn’t as shocking to me as when I was younger with my grandfather. Still, it was heartbreaking.

What I went through was nothing compared to what you have with your wife. I’m so sorry.

Wishing you peace in this overwhelmingly challenging and difficult situation.

Take care.

Capgras syndrome is also called imposter syndrome. I think you just have to go along with it, as other posters have said.

"Capgras syndrome is most commonly associated with Alzheimer’s disease or dementia. Both of these affect memory and can alter your sense of reality." (Healthline.)

I'm sorry.

Don't know what capgras syndrome is but what you describe are typical Parkinson psychosis symptoms. I know it's frustrating and you're trying your best, but caring for her requires you to change your responses to her behavior. Her not recognizing you and thinking there are other men I'm sure is very hurtful to you. There are a couple of things you've already picked up on; trying to correct her and getting angry. Yup! Doesn't work. Tried it myself- total failure. You might try not mentioning your relationship to her and not trying to convince her who you are. Yes, going along with her delusions is the correct approach, but it's easier said than done. It's not intuitive and takes practice. Being a caregiver to someone with PD is all OJT, there is no Owner's Manual. You learn through experience, something you've done already in part. However, there are many, many resources available to you in the form of books, videos, websites and even dementia support groups (see if there is one in your area). Google "Parkinson's behavior". Educate yourself about the disease. You are not alone in this endeavor. Don't isolate yourself from help and continue to seek support. Keep up your loving caregiving.

This is part of her Dementia. Her mind is like swiss cheese. Some days she may remember you, others not. Yes, you need to just go along with her because this is now her reality. With my Mom her reality included the TV and dreams. It was all real to her. I kept on the "Me" channel for Mom because it had all the old TV shows. I had to make sure I got to her room by 4pm to turn off the show Emergency. Every time there was an explosion or fire she thought it was in my house and we had to get out. Another time she pointed to the screen and told me the doctor wanted to talk to me. The doctor was Dick VanDyke and the show was Diagnosis Murder.

Yes, you just need to learn to go with the flow. You cannot change how she thinks. She can no longer be reasoned with. She can't process and she can't comprehend. So sorry you are going thru this. Its a horrible disease.

Arguing with a brain suffering dementia won't ever work at all. Please discuss with her doctor as to any definitive dx, something we couldn't do. You might just "play along with this" and indulge any fantasy over having multiple personalities. You sure won't "win" by arguing it. It has to be very disconcerting as a new symptom you see playing out only with you. Do discuss this with her doctor. And yes, correcting her is likely to do more harm than good.