Dad very likely has dementia, but Mom terrified to "tell on him"

Jennia

My sister and I live in Washington, with our parents in Arizona. We don't see them often. Recently, my mom has told us some troubling stories of his memory lapses, weird ideas, not understanding distance and time, etc. She is trying to get him diagnosed, but he gets angry very easily and she is terrified of upsetting him. She also doesn't want us to "butt in" and try to talk to him, because she says he would never forgive her for betraying him, by getting us involved. We've always had a good relationship with both of them. I know this is textbook disease behavior, but it makes it very difficult to help. She is understandably super stressed out. How do we help?

H1235

Welcome, but sorry you find yourself here. Pointing out his symptoms of dementia is not going to go well. Most people with dementia can’t recognize their symptoms or limitations. This itself is a symptom called anosognosia. I would suggest she tell him he has a doctors appointment (general checkup or something like that). She should then give the doctor all her observations and concerns. She could do this by dropping a note off at the office the day before the appointment or if he doesn’t use it a patient portal. This way she is not bringing things up that will upset your dad and she remains in his good graces. The pcp usually does some blood work and a very simple in office evaluation. The doctor would probably then refer him to a neurologist. It can take months to get in. One of the first things we were told at diagnosis was to get legal matters in order. A elder law attorney is best. Your dad will need to appoint a DPOA. Again I would not try to convince your dad this needs to be done because of his symptoms (because he will probably not be convinced he has any). Have your mom suggest it as just something that needs to be addressed now that they are getting older. I know all this sounds deceptive, but the alternative is a constant battle. The idea is to do what is best for him without him knowing or upsetting him. I have attached a DBAT staging tool that might help your mom recognize some of the symptoms. The Caring long distance thread doesn’t get as much traffic. You might want to repost on Caring for a parent or general topics. There are a lot of knowledgeable people her with great advice.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

towhee

Welcome. I agree with everything the above poster recommended. You really do sometimes have to work around the person with dementia instead of trying to get their buy in. When your mom expresses her concerns in a note to the PCP you might ask to review it and make sure that she tells the doctor about your father's anger and her fear. Sometimes anti-depressants can help, or other medication.

It can be difficult for links to post here, for the stages try-

Tools for assessing dementia progression — Tam Cummings, PhD