Should I have conversations about Mom's Alzheimer's disease in front of her?

2 answers | Last updated: Oct 02, 2016
A fellow caregiver asked...

Gosh, what a great site! I am new to this. . Mom is probably 'early stage'and taking aracept. My 84 year old Dad is living with her and, like the frog in the pot of hot water, doesn't seem to be catching some of the new behaviors. (Or like most of us humans, doesn't want to see them and is in vague denial. I wish i could be!)

i was living with them for a few weeks following an unrelated medical problem and noticed a LOT of things that had not been apparent to me on casual dinner visits, 'movie dates', hair dresser appointments etc. After reading a lot of your blogs, i started sharing some of the more pertinent insights with my dad. My question is this: Should i be having these conversations in front of her? I know AZ messes with the mind, but i feel her emotions would be fully intact and being confronted w/ what she will undoubtably consider "failures" would be painful and destructive. I have a an out of state sibling that tells me it would hurt her if she knew we were "talking behind her back". I think she IS HURTING every time she catches a mistake or misses an appointment and scrambles to 'cover'. and to have these "strategy sessions" in front of her would just acentuate that pain. If your advice to me is to explain our concerns and share our "strategy sessions" with Mom there (which will obviously involve her illness) can you please send me some dialogue ideas. I just can't pictures having to go into that with her. My heart breaks, just having to discuss it with Dad. We are both in tears and i don't see how dragging her into that is healthy. We've been gradually making adjustments from ideas off your site and both my folks appear to be accepting them well and expressing gratitude , at least to my husband and me, and at least for now. Thank you for all your help.

Expert Answers

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

Your concern about your mom's fragile emotional state is heartwarming. You are certainly on target concerning her emotions being intact - indeed they are! Having a dialog with your dad about developing strategies to deal with your mom's changing behaviors should not happen in front of her or any location where she may have some awareness of your conversation. You both want to support her without underscoring the behavioral or cognitive changes. One of the best means to be supportive of a parent with Alzheimer's (AD) is to take advantage of any situation when your mom refers to her 'failures' or to a feeling of losing her mind, or perhaps when she says something like "what is the matter with me?" This is your opportunity (and dad's too) to reach out to her, hold her hand or hold her in your arms and simply say "you are having a problem mom and I am here for you". This confirmation is a loving validation of the changes she is experiencing and what she needs to know most is that her family won't leave her as she progresses.
If she expresses any hint at wanting to talk about her illness, then try to be as comfortable as possible in discussing her diagnosis with her. "This must be kind of scary for you mom" or "How do you feel when you can't find a word - I think would find that frustrating" are the kinds of lead-in statements that make it easier for an AD person to talk about their feelings. Remember that talking to dad in front of her about developing strategies for dealing with her behavior is perceived by mom as a negative interaction and it is quite different from talking directly to her about her feelings which is both positive and supportive. Do take care of you!

Community Answers

Kathleen.j. answered...

I needed to hear this. What you say makes sense. I'm new at this, so these discussions and sharing help educate me in the do's and don'ts. Thank you.