My mother has dementia and presently has been staying with me for a couple of weeks. One thing I find very frustrating is when people call her or drop in to see her, she seems very well & lucid (which is good) and can carry on a great conversation for a half hour or so. I’m sure people must think I am making more out of her situation than it really is, however, I see a VERY different person after they leave. For the most part, within a half hour of the conversation or their visit, my mother won’t remember anything of their conversation. I’m not quite sure how to respond to people when they tell me how well they think she is doing. Any suggestions?

-Sharon

Oh Sharon, you have brought up something that happens to many and happened to me over and over again. It is a two edged sword because you don’t really want your Mother to be sick, but at the same time you would like people to understand and empathize with what your daily life is looking like. The guilt from “wanting” your Mom to have these symptoms and signs of a horrible disease is understandable but do not sell yourself short. You are with her when her friends are not and see the results from her putting on a good show. It is very common for people with dementia to somehow pull themselves together to carry on conversations and visit with friends and family and then the caregiver will witness the fallout after. Usually, tiredness, even more forgetful or agitated than usual, and sometimes they will seem to slip a little further into the disease.

There really isn’t a way for you to get anyone who hasn’t walked this walk to truly understand the 24/7 toll being a caregiver can take; not just physically but emotionally as well. Watching your Mom have a seemingly “normal” conversation in front of others and then being fully present as she forgets their visit and the conversation is emotionally very difficult. It is a reminder of what is happening and what is still to come. Please try your best to keep perspective of how little you understood before you were staying with your Mom for those few weeks. Then convert that to how her friends see her. I even had someone tell me they thought Jim was fine, maybe the doctor has misdiagnosed him. I wrote about these frustrations on my site.

Stay strong Sharon. We all care and are with you.

5 thoughts on “Friends think my Mom is doing better than she really is. What do I say?

  • Carol

    Thank you. Yes it is very hard seeing this. When we have company she comes to life full of stories. When its just the two of us she has problems just remembering anything about her life. I cry because it’s like watching her slowly fade away…

  • Debi

    I vet the same with my mom. They say she seems fine and couldn’t be as bad as i say. It’s very frustrating. I wish i had the advice you are looking for but I’m looking too. Good luck and God Bless.

  • Kathleen

    My mother (up until a month ago) was living with me and I was her 24/7 caregiver with only 1 brother helping me out once a week for 6 hours. (I am the 9th of 10 kids). I dealt with this with my siblings who live out of town and only see my mom on holidays or family occasions, and then only really spend maybe 10 minutes tops truly paying attention to her, trying to engage her. They will later talk with my brother and say “how good” our mother was/is doing. My brother, who has experienced some of what I dealt with during the sundowning hours corrected them and said “you only see her during the Goldilocks hours, you aren’t living it 24/7” I was thankful for his back up on the issue as my siblings were totally clueless about what it would take for me to prepare my mom for holidays, weddings, and other family parties, and what I would deal with days after! It’s frustrating because family/friends just don’t think about how their words make the caregivers feel, nor do they have a complete and total picture of the person with dementia to make an accurate statement on their well being.

  • Linda

    I learned very quickly to say- yes he’s having a few
    Good hours –
    People only see what they want to see
    Family especially .
    All of us out on these sites Know & feel you pain & frustrations –
    We are all here to help you through this .

  • Julia Bryant

    My husband has dementia he’s in long tern care nursing home need help

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