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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.
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Capgras Syndrome is becoming more common with folks with dementia, and how very sad that the "dementia specialist" didn't seem to know anything about it.
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.
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