My mom hasn’t heard diagnosis yet but her doctor told my brother

Brigit

My brother brought my mom for a visit in the state we live (a good ways away from her) to look at retirement homes here and during the course of her visit finally made contact with her doctor who confirmed the diagnosis we suspected.  She flies back home next week and has an appointment with her doctor.  My brother feels we shouldn’t tell her about the diagnosis without her doctor there to answer questions but we won’t be there when she hears about it (but another not as close family member will be there).  Wondering if anyone out there has with experience could tell me if my brother’s instinct is right or if it would be better to hear it from her children first.  Many thanks!

M1

Welcome Brigit, goLd you've found this forum though sorry for the need that brings you here.

I can suggest from personal experience that if you are expecting your mom to have an "aha" moment when hearing she has dementia, that probably will not be the case, and it may not matter whether anyone tells her because she probably won't believe it or realize the implications. I can understand that expectation-I had it too-but you are expecting her to react in a rational manner, but her ability to reason is already gone. You'll find that many caregivers here never discuss the diagnosis with their LO. Also read up on anasognosia, which is a prominent feature of the disease and is the inability to recognize the deficit-she may think she's fine. It's likely that you and your brother will have to proceed with making plans for her care regardless; certainly you'll need to arrange durable and healthcare powers of attorney and assess her finances, if that's not already been done.  many here start that process with a certified elder law attorney (CELA).

But in general I would gently say that it sounds like you are putting too much emphasis on her response to the diagnosis and it's probably not going to go down like that. Early on in my partner's decline I met with our doc and told him he needed to tell her she had dementia so that she'd cooperate with me, and he laughed. He was right. We did do some very brief drug trials that were brief because of side effects. She's now entering stage 5 and only occasionally will recognize that she has problems.

Good luck, I would suggest reading lots of threads, there is much good information here. Others will have suggestions for you too I'm sure. Sorry you are having to travel this road.

harshedbuzz

Team Bro 100%.

There is every chance it won't really matter one way or the other. It's quite possible the doctor will do the big reveal and your mother won't recall the conversation by the time she gets home. Or she won't accept it because she has anosognosia which is a common side dish to dementia that prevents the person from being able to recognize that they've had a cognitive shift. Or her higher order thinking may already be impaired to a degree that the words don't have the impact they would for a more capable individual. 

My dad was diagnosed in the hospital after a psychotic episode; it happened to be my parents' 60th wedding anniversary. The attending neurologist told us that he believed dad "had Alzheimer's and that people with this condition were know to live as long as 10 or 15 years". Dad's face broke into a smile and he said "that's the best thing I've heard all year, doc". 

Letting the professional break the news means you get to remain her ally should she recall being told her diagnosis or being told not to drive or handle finances. Sometimes in the earlier stages, there is recall of emotionally prominent events; my dad didn't hold onto being told he had Alzheimer's but he remembered and resented being told her could no longer drive. We heard all about the doctor who stopped him driving until about a month before he died. In doing this, the neurologist allowed us to validate dad's anger and frustration around driving having not been the source of the ban- that was a gift. 

Paranoia is a common feature of dementia. For a time my dad believed I was in collusion with this doctor to "put him in a home and take all his stuff". Had I been the messenger around the diagnosis, I'm sure this phase would have been more entrenched. 

Perhaps, you can send the doctor your questions ahead of time or have your brother open a patient portal to allow you to read notes and ask questions if you can't make the trip to be there in person.

One question I would have is what sort of living arrangement is most appropriate for your mom. "Retirement home" is an awfully generic term. I would want to know if mom is so early in the disease progression that a hospitality model AL would be OK for now, or if she is already a candidate for a secure MCF. Most families have a rosier opinion of how well their LO is functioning- often they focus on how mom is on her good days. Care needs are determined by functioning at their worst recognizing that this disease is always progressive. 

HB