Talking with PWD

What are you worried about lying about? Or is it just that you are wishing that your relationship doesn't have to change? Wishing that the disease won't change who he is?

@Smilescountry Reading your post carefully, I see you are in quandary. I presume that telling a lie can lead to being "busted" (due to the uncanny ability to tell a lie) but telling the truth can cause problems — perhaps explosive anger, or a tremendous sadness.

Perhaps you can say something non committal to avoid the above problems, and to preserve the trust. Can you get away with saying "maybe", "I don't know", when asked something?

I think the ability to detect a lie so well is what distinguishes your Dad from other PWDs. If you give a non committal answer, will your Dad just forget about it, or do you think he will repeatedly ask until he is satisfied?

@Smilescountry

A couple of thoughts came to mind reading this.

It is not unusual for PWD to recall information that has a strong emotional content. Dad couldn't recall what he'd had for breakfast or the state in which he was living, but he absolutely could remember vividly being told by his neurologist that he could no longer drive until about 2 months before he died. For context, he wasn't sure whether my sister was sick or had died, but driving? That stuck.

Emotional intelligence remains well into the latest stages. This makes sense if you think of dementia in terms of regression. Very young infants can pick up on a parent's mood; so can PWD. Tam Cumming 7 stage model offers a developmental age equivalency for each stage for reference.

It's likely you are telegraphing your discomfort with telling him a truth rather than a gentler explanation and he's reacting to that rather than the actual lie. You seem very invested in honesty which isn't always the kinder option. If you wish to be kinder, being proactive about anticipating explanations could make you better at it. Perhaps you've not had an emotionally charged situation as yet. My MIL, my friend's mom and my one aunt really leaned into ceding independence for giving up the responsibilities of adulting. Dad? Not so much.

I came to dementia with the experience of raising a son with high functioning ASD. It's interesting how often the lessons and skills I took away from that served me in dementia caregiving. When my son was much younger and struggling, his psychologist admonished my permissive-style approach to parenting. He said there wasn't anything wrong with that approach for many kids, but that my son needed a more authoritative approach with clear expectations and structure built into our lives. I resented the ever-loving crap out of this— I didn't want to change my whole persona at home. I struggled with this mightily, but his psychologist, dev pedi and specialist teachers all said the same as I continued to do what was comfortable for me with predictable results. When I finally committed to it, the kid relaxed and blossomed.

TL;DR. My son couldn't adapt at 6, so I had to. It wasn't about me. My dad couldn't either. In both situations it wasn't easy, and I dearly wish there was some other way, but it was what worked.

I sincerely hope you can get through this without compromising, but I would keep kindness top of mind. If your parents no longer have the bandwidth to process upsetting information, it's better to wrap them in the protection of a gentler narrative.

Stepping off my soapbox—HB

I don’t routinely lie/fib. It’s difficult for me and my MIL is with it enough to remember some of the lies. But recently I absolutely lied and it was the right thing to do and solved the problem. MIL got lost between a dream and reality and was yelling for her long deceased sister. She was positive Sis was in the kitchen. I was only able to convince MIL to go back to bed by lying to her - “let’s get you back in bed and I’ll go find Sis and bring her to you.”

Other times, I routinely use non answers “is that right”. “I’m sorry you feel that way.” “it’s not fun to see/hear that, is it?” It’s amazing how many ways there are to answer someone without actually saying anything.

1000% agree with you that most of the time, it’s an attempt to engage and be relevant.

As @harshedbuzz has assured me often, these middle stages are often the most difficult.

You sound like an amazing child who’s trying hard to help your parents. They’re very blessed to have you.