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6. Don’t talk about someone with dementia in front of them like they don’t exist.

brunchwithmom

My sister and I sit across from our mom and keep the conversation going.

This is a deeper dive into the sixth item from my list of things to never say to a person diagnosed with dementia. This one is a bruiser–and I watched it happen so many times by people that are trained to care with individuals who have dementia, that it shocked me every time.

Most often, issues come up in a medical setting. Early on, when we would visit a doctor, I would bring a note explaining my mom or dad’s diagnosis because MOST DOCTORS DON’T READ THE MEDICAL RECORDS. I would confirm with the person doing the intake that they got the note so I never needed to say in front of my parents that they had been diagnosed with “multi-infarct dementia” or “Alzheimer’s”. Before I adopted this tactic, my parents would respond with disbelief and anger which created a whole cycle of inquisition by my parent who never recognized or absorbed their diagnosis.

Unfortunately, when the doctor arrived, they would turn to ask me questions as if my parent wasn’t there. I would immediately turn to my mom or dad to see if they wanted to answer. They would usually say they had nothing to share and I would then offer up a response. I know that the doctor’s don’t have much time to be with the patient, but this is something that for humanity sake, really shouldn’t be rushed.

The worst was when it was done by the family. I understood they don’t know what they don’t know, but you could watch the family visit go sideways almost without fail when it happened.While they might not be able to navigate a conversation about even the weather, at our core, we recognize being slighted. It must be one of the most basic human qualities that helps keep us alive.

When we visited with our parents, my siblings (or my kids) and I would always include them in the conversation, even thought we might be carrying on the entire conversation.

There were several times when I would want to talk to my mom’s personal care assistant about something and I never did it in front of my mom. We would meet outside of her room, or take a quick walk together.

As the person with dementia is losing the ability to remember or even navigate their day, the thing that needs to remain is their sense of worth and that element of them survives all the way to the end. Witnessed. 

11 comments on “6. Don’t talk about someone with dementia in front of them like they don’t exist.

  1. We had a new carer last week who asked me: ‘does she need help in the bathroom’. Maureen stayed in there for a long time and I gave the carer an ‘early bath’ as they say in football.

  2. Good advice to respect those who are afflicted and let them keep their dignity intact, thanks.

  3. I saw it every day for four years by all the “care” staff in the facility in which my mother was imprisoned.

  4. […] via Don’t talk about someone with dementia in front of them like they don’t exist. — Dealing with … […]

  5. Well said, Kay. And I do believe the essence of the person remains right to the end. Sometimes people (unfortunately very often that includes nurses) see the condition rather than the person who has the condition.

  6. […] Even if you do not currently care for a person with dementia, this is worth reading, so that when you meet someone who is dealing with this life changing condition, you have some guidelines on how to speak to them. https://dealingwithdementia.wordpress.com/2016/08/20/dont-talk-about-someone-with-dementia-in-front-… […]

  7. Well, this hit me to the core, and I thank you for the post and your blog. My mom was diagnosed with dementia almost 2 years ago now. She’s as feisty at 92 as she was at 62 – actually, probably feistier. She resents anyone helping her in ANY way, even though she is unable to shower/dress herself/tell time, etc. It’s a battle and most of the caregivers in her Assisted Living place are kind and wonderful to her (even though she yells at them all the time). I agree, we must treat our loved ones with this horrid disease with respect and dignity. But we must also appreciate and understand the amazing (difficult) work of our loved ones’ caregivers. I’ve been sending flowers and chocolates every once in a while to the staff. They deserve it.

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