10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

goldenruleThis is the tenth and last detailed item from my list of things to never say to a person diagnosed with dementia.

In some ways, this is a culmination of many of the key things to recognize when you are engaging with someone with dementia. While the person in front of you might be very different, seek to connect with the person you know. I understand that it’s easy to think they have no awareness of their surroundings, so why would they realize what was being said?

What is remarkable, and why dementia is devastating to those of us witnessing the changes in our loved ones, is that we see it steal away reasoning, executive functions, and interest in societal niceties. But if you are watching, you will see the individual need for meaning and purpose and the ability to connect with other humans remains.

When my dad passed away, and mom was in her assisted living community, she stopped going to lunch. She said she preferred the peanut butter and jelly sandwich in her room. When I would visit over lunch, I learned that most of the other residents didn’t want to sit with the “crazy lady” who couldn’t remember their name, ask them questions, or would just repeat the same story over and over. She didn’t want to go to lunch and sit alone. Who does?

There has been a good change to the way we view individuals with dementia. Kate Swaffer who posted the initial 20 “don’ts” has done a wonderful advocate for herself and everyone diagnosed with dementia. Behavioral research also demonstrates how changes to an environment and how you interact with them can benefit someone with dementia. Dismissing that the ability to recognize a terse remark or slight, is a mistake that could lead to agitated behaviors — just as it does for those of us without a dementia diagnosis.

The golden rule to “do unto others as you would have do unto you” applies to everyone. Recommended.

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

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. 

Honor thy mother and father, even when dementia has been diagnosed

I try to pinpoint when the shift in my parents happened to allow me to help them more. While most days go smoothly, there are still some days when my mom gets aggresive or aggitated and managing through each task is difficult.

My parents have been staying in their retirement apartment and have not taken a cab in almost a month. I’ve been trying to plot out my visits to keep them in their community. However, in the past week, my mom’s gotten feisty over the need to get to their townhouse. She doesn’t remember that we have moved all of her clothes, her framing materials and there are only a few staples in the pantry. The reality is that they are bored and the ritual of going between homes to kill time is still part of their memory.

I’m hoping if I can keep this up long enough, the desire to get back to the townhouse will fade — just like it eventually did for driving.

What I have noticed is that if my mom feels that I’m doing anything outside of the traditional parent / child parameters, she deflects every suggestion. For instance, when we were getting ready to leave to get groceries and nothing was on the list but club soda, I asked if they had bread.

Mom: “Yes we have bread. I told you all we need is club soda.”
Kay: “I’d like some toast before we go, could I make some real quick?
Mom: “Yes, help yourself.”
Kay: “I can’t find the bread, can you help me?”
Mom: After opening up every cabinet, and looking in the fridge and freezer she responds,”Can you put bread on the list? I can’t find any.”
Kay: “Okay, could I have a soda?”
We continue this way until we have a grocery list.

I guess there are only a few things left that make sense to my mom, and keeping her dominion over me will be one of the last elements she will continue to demand. Respected.