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?
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.
"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.
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.
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.
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
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.
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!
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.
Looking at our caregivers’s journals, his hallucinations increased with the dosage until they were intolerable. I wish we had known about the connection and we had spoken with the neurologist sooner, because we had to slowly decrease the drug over weeks.
Discontinuing the Carbodopa Levedopa did provide noticeable relief, though the hallucinations did persist and worsened again within months.
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.
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 .
It it might be worth a try. Have courage, and be good to yourself. We are pulling for you.
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.
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.