Her delusion is just having difficulty identifying me as her spouse. Everyone else in our lives she knows and remembers - it's just me she has difficulty with. Her delusion is that there are multiple men who live with her and I appear as these different men. I've been trying to correct her but it's caused more harm than good and it makes me extremely frustrated. Do I just go along with her delusions? I almost always feel the need to correct her but it seems counter productive and sometimes causes her stress which in turn makes her Parkinson's worse. It absolutely drives me nuts and I sometimes get angry with her which also makes everything worse. What should I be doing?

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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

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.
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Reply to Tunfet

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.
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Reply to my2cents

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
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Reply to lealonnie1

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
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Reply to jfbctc
disgustedtoo Oct 17, 2020
I am still amazed and extremely impressed on how well you are doing, even 4.5 years after your Dx! May the progression continue to be as slow as a snail in molasses!

Your family is also a blessing for you - If I recall correctly, you had told them to put you away 100 miles away when the time comes and not to visit. I would at least leave the option for visiting open. Despite how this affliction treats you, they still know it is you, and they care about you. Yes, it can be hard watching a LO fade away, but that should be their choice.

Thank you for all your intelligent insights you have shared with us!
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.
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Reply to sjplegacy

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.
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Reply to mommakaptn

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 .
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Reply to Mem021

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.
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Reply to JoAnne80

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.
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Reply to gunnel40

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
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Reply to thingsarecrazy8

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