3. Don’t correct or challenge trivial things.

trivialThis is the third item from my list of things to never say to a person diagnosed with dementia. It took some time for me to learn this and I feel like its a partner to tip #2 to not say “remember” — they go together.

I recognize this “don’t” is sadly one of my righteous habits. I know that it has softened over time but growing up in a smarty-pants family where debate was encouraged, we got in the habit of pulling apart arguments plank by plank.

When mom and dad were driving, forgetting to pay bills, and calling me over-and-over to ask the same questions like “what day is it?”, I thought pointing these things out as a failing would help them finally sell their town home and move into the retirement community full time. Oddly enough, they recognized that their spouse was doing poorly, but never recognize a weakness in their own abilities.

What my behavior did was to create distrust with my parents. Generally, my mom would become argumentative, and my dad would shut down.

I realized that I had to change because my parents were unable to recognize what was happening and therefore unwilling to make any changes to their lives.

What I didn’t know then, and still would not have accepted, was that I would have to wait for something to happen to force a change. When dad broke his hip, required surgery, spent several days in the hospital, and weeks in rehab, I was able to learn a lot more about how much help my mom really needed on a day-to-day basis. It also gave me time to collect more information on their finances and their medical history so in the future I could be a better advocate.

I started from the place I knew and within that familiar dialogue I had with my parents as their adult child. However, with their dementia, logic was not logical to them, they were recreating their memory because they didn’t remember. My habit of debating matters, especially when it came to the little things, only made the road more difficult for all of us. Experienced.

Dementia, Emotions and Kate Swaffer Rocks

credit: kateswaffer.com
credit: kateswaffer.com

One of the constants in my mom’s care has been changing nature of the extra caregivers or personal daily assistants (PDAs) we have put in place. At her old community, we were lucky to have one that lasted more than a year, but we lost her in the move to the new facility. Out of the two that moved with her, one has already changed. I know that the changing nature isn’t good for my mom, but I understand that often these caregivers need to do what’s best for them and their families.

I stopped by to meet the new caregiver. The agency knows I’m looking for a calm, happy face that can help my mom manage in her wheelchair and help get her involved in the community activities. When I arrive my mom is lying in bed and the caregiver is sitting silently in the corner. The caregiver tells me my mom asked to take a nap after finishing lunch.

When I’m chatting with my mom, she tells me I shouldn’t be talking to other people in the room about her. I actually didn’t break rule #15 by talking about my mom in front of her, but the caregiver did and I didn’t stop it. I should have asked her to join me in the hall. I hope you will read Kate Swaffer’s “20 things not to say or do to a person with dementia.”

I found Kate’s blog several years ago and she even worked with me to answer some questions on a joint blog we created called “The Dementia Dialogue.” When I make a blunder, she will politely let me know. She’s been a great help to me and I hope you will take the time to learn more about her. She was diagnosed with younger onset dementia in 2008 aged 49. Her website kateswaffer.com is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones.

While my mom’s dementia is pretty progressed and on a day-to-day basis she may not recognize me, she still senses a slight, reacts to energy, and emotions, and deserves to be treated with respect.

I appreciate what Kate Swaffer is doing and dream that one day I will get to tell her in person (she lives in Australia) how valuable her words and wisdom have been to me. Appreciated.