Mom has white matter dementia with Capgras (imposter syndrome-not recognizing her spouse, no recognizing she is her own home,thinking there are people there) that comes and goes. She get extremely anxious at the thought of anyone other than her husband caring for her even her own daughters. Her physical decline is to the point where daughters do not feel safe caring for her alone (she falls easily and need assistance with all ADLs). We tried to have a paid caregiver along with one of her daughters this weekend and while they were there it was fine but she was in a very anxious state the entire week before, not sleeping , crying and expressing suicidal ideation. The day after the caregiver was there -now the Capgras is back after almost a year of no symptoms. If we don’t tell her things ahead of time she gets paranoid that things are being done behind her back. If we do tell her, the anxiety takes over and now seems to have triggered a return to Capgras after months of no Capgras. What is the best strategy for future caregiver needs? My dad cannot become homebound permanently but also does not feel comfortable with not telling her about upcoming visits. We met as a family with a dementia specialist who knew absolutely nothing about either condition and was not helpful at all! We have a call into doctor but are wait listed to get a call back. Have not found any resources to be helpful since the issues are different than Alzheimer’s.
When I came to Forum 5 yrs ago when I was slammed with a diagnosis of Lewy's for my brother, he had made me his POA and Trustee. I knew ZERO. It was one heck of a quick education. And that's how we all learn, usually: suddenly and the hard way.
Your caregiver would thank you for a little briefing and it would be a wonderful thing to have, actually, for people who, in future, ask you "so what IS CAPGRAS (because why would they know, really)?
Given how long careworkers now stay on one particular assignment, CAPGRAS will be problematic in that a happy and safe and TRUSTED environment is key. And trust is built over time.
Basically, you're looking at an unpredictable quality of life ongoing, and you are standing witness to the torment, desperate for solutions that are few and far between. KNOWING about CAPGRAS is a good deal different than knowing what solutions there are. Because, again sadly, there are very few--those solutions--whici is true of this diagnosis and with many dementias and mental illnesses. (I have a bipolar family member, so kind of know whereof I speak.)
My brother was diagnosed with his Lewy's by his symptoms with "probable early Lewy's Dementia by symptoms". Long diagnosis! He was competent in so many ways, and especially in knowing what was coming for him, and what could be done about it (nothing). He hoped to beat it by dying first and he did.
As an RN, researching Lewy's, I was amazed how different it was from other dementias. So much up and down. So many times he seemed almost normal. Such vivid and real hallucinations.
I'm so sorry.
Best you can do is educate others in so far as you are able. And understand the limitations that now will be a part of life ongoing.
As Dr Laura says, not everything can be fixed.
Until and unless they go through it, no one will have a clue what you are experiencing.
When you go to look up "treatments for CAPGRAS" the first thing you're met with when you type that into your search engine is this:
"Treatment for Capgras syndrome involves addressing the underlying psychiatric or neurological problem:
Specific treatments may include:
Taking antipsychotic medication to treat schizophrenia.
Taking medication to treat dementia.
Surgery or neurorehabilitation for traumatic brain injury.
Creating a happy and welcoming environment.
Using validation therapy that acknowledges the delusions without rejecting them5."
You likely already know just how much hope there is in that "treatment".
So you are left with the conundrum faced by most on this Forum, and for most people who are dealing with mental illness in a family member.
There are few answers.
You expect the unexpected.
No one will understand what you're faced with, nor will have the time nor inclination even to listen overly long (they are dealing with their own lives.)
I am so sorry.
I would certainly be talking to your moms doctors about putting her on some medications to try and keep her anxiety down to begin with as that will help as you bring in folks to help.
And since your moms brain is now permanently broken, you can no longer reason with her about anything, so I would just plan on hiring folks that are familiar with working with folks with dementia as at least they won't take anything personal that your mom says or does.
And your dad can just tell your mom that he's hired these folks to help him around the house so she doesn't feel that they're there because of her.
Dementia is hard on all involved, and there are no easy answers. All you can do is try your best to make things a little easier for all involved.
And I wish you well in doing just that.