Divulging a LO’s diagnosis

WhatNow?

When out and about with your LO, when you need to let another person know that your LO has dementia/cognitive issues how do you go about it?  

I usually find myself sneaking the words “she has Alzheimer’s/dementia” as quite and quickly as possible, because the mention of it causes my mom to get angry/mad if only for a few seconds/minutes or until redirected.

Also what is up with all health care workers not knowing how to approach people with memory issues even after you tell them the reason why.  Just seems it would be nice to not have to navigate awkward situations in healthcare settings.  

We’ve had Doctors and techs say things to my LO like, the memory is really down today or you were diagnosed with Alzheimer’s?  

John2.0.1

I don't know. When I'm out with my mom she's the one who says she has parkinson's and indicates that people should address their questions about mom to me.

 I suppose it depends on how your LO feels. Is it a secret? Is your LO embarassed? 

Or would it actually take the stress off your LO if you spoke up and took the lead? 

Like I said, with my mom I know that she prefers I speak up for her in almost all cases so that she doesn't need to have the stress of answering questions. 

I would guess it depends on how your LO feels about it. 

aod326

With DH I had a large piece of paper in my purse, that said "Michael has dementia. He may not make sense, and may not understand. Please be patient." I would try to stand behind him and surreptitiously show it to the person DH was trying to talk to. Often that worked really well, although occasionally the person would say something like "what does that say?"!

Other times I would do, as you do, quietly and quickly tell people so that DH couldn't pick up on it.

I also had to remind myself that people will eventually pick up on the fact and that, while I wanted to save DH any embarrassment or frustration, sometimes I couldn't.

I also experienced several instances where I'd be inwardly shaking my head when healthcare workers didn't "get it." Including a couple of doctors who thought talking loudly and slowly would work!

Good luck.

towhee

My LO had to be in the hospital for a few days and was very upset and anxious when she got home. Forgot almost immediately that she was in the hospital, but remained really anxious for about a week. We had to make a followup visit to a specialist. I called ahead, said she had dementia, please for the doctor not to mention her being in the hospital. Nurse came back with message, said the doctor doesn't believe in lying to dementia patients. Doctor said to LO, I hear you were in the hospital, LO says "I was in the hospital?" Absolute anxious bewilderment. Doctor barely looked her way the rest of the visit and only talked to me. Medical professionals often don't have personal experience and they aren't trained to deal with dementia.

May flowers

We had a terrible time with doctors dealing with my FIL when my MIL was in the hospital. She was in remission from her cancer, but had surgery which she never recovered (or woke up) from. Over a few days we were preparing to say good by to her and turn off the vent, allowing time for family members from overseas but one doctor especially was VERY impatient and kept pushing to turn it off right then and there. 

We told everyone who dealt with her there that he had dementia. But this one doctor took my FIL aside, without our knowing, and tried to convince him to turn off the vent right then. My poor FIL was so confused, and by the end of the talk was scared, crying, wet his pants and begging the doctor for my husband  (he had POA and was making the decisions anyway). I will never forget that. It still makes me mad to this day, and it made the nurses mad too.