Truth, Lies and Dementia

truthlieLast week I read a blog discussing the ethical issue of using “fiblets” when dealing with someone who has dementia. The author was adamantly opposed to ever telling a lie. My stomach clenched because I have told some whoppers. I suggest there is a very fine line between right and wrong and every person and situation differs – the rule is gray — not black and white.

The first years I struggled with the issue of truth. Telling it only got me into fights with my Mother. She didn’t believe she had a stroke, asked me to stop by to pay bills or even that their licenses were revoked. We eventually had to hide their cars. The full story is covered in Operation Safety Net.

Other issues erupted and we would try to explain the situation — I finally concluded Explaining Just Makes You Feel Better — it didn’t help the situation and usually created more problems and arguments. In most cases, my parents NEVER remembered the event that had created a problem and thought we were liars for repeating the story to them.

The first doctor that diagnosed my parents told me:  Sometimes You Have to Be Sneaky. It took me a while to recognize that he was right and I needed to overcome my “honest Abe” issues and either keep quiet or in the most pivotal moments tell a whopper of a story. When the retirement community was going to terminate my parents Independent Living contract, we created a situation to ensure my parents ended up in the Assisted Living section of the Continuing Care Retirement Community they selected.

I have never lied to parents to make things easier for me. I have avoided topics, reworded responses in order to keep life as pleasant as I could for them. I have never once taken my role lightly or felt that my actions disrespected my parents. My overriding principle is to treat them as I would want to be treated. I hope you all find peace in the tough choices you have to make on this difficult journey. Wished. 

I‘d love to hear from you. Please share your thoughts on the topic. Have you ever had to tell a “fiblet” but did so because it was in the best interest of a parent or loved one?

 

We have a meeting with the Executive Director at 11 a.m.

jerkToday is the day when my parents will be told that they are being transferred to Assisted Living. My mom knew she had this appointment with the Executive Director and has been asking me if I think it’s about moving the frame chopper into their apartment. When I arrive today my mom is anxious.

My parents didn’t ask me to accompany them, but the retirement community requires that I’m at this meeting since I hold my parents power-of-attorney. My parents are happy to see me and my mom wants to discuss all the reasons they should be allowed to move the frame chopper into their apartment. We spend some time walking through the measurements again.

I feel like a jerk. I know what’s coming. I sit down and we talk through how the chopper would fit in their guest bedroom. She shares that she’s worried they might be asked to give up the second half of their apartment. They took a 2 bedroom and connected it to a 1 bedroom.

I remind her that they moved into this retirement community because they wanted help managing through the retirement years. The apartment they created and decorated was featured on many of the open houses the community hosts for prospective residents. It is a nice, gracious apartment. She tells me I’m a good talker and I stated that so well, I need to speak on their behalf at the meeting today. Double Jerk!

We have been concerned for my parents safety and enough events have occurred that the retirement community is exercising their right to transition my parents to Assisted Living. My parents have resisted every change or suggestion of change. We knew this would be difficult, so my siblings and I worked with the Executive Director on how to best communicate and make this transition.

I tell my mom that the Executive Director called this meeting and we just need to show up to hear what she has to say. I know I played a role in orchestrating how this news would be communicated and while I know it’s the right decision, the process has made me uncomfortable. Shamefaced.

Wow! That looks really different with my glasses on!

The hospital where most of my parents medical visits occur is a beautiful new facility. It has huge windows, large corridors and many oversized paintings and photographs of scenes from nature. My mom is enamored with many paintings around the hospital.

The exam rooms are not so spacious when you have four people in them.  We end up sitting in a room with the neurologist, my mom, my dad and myself.  Our knees all seem to meet in the middle of the room as the appointment begins.

The neurologist asks my dad questions. She starts with “Why are you here?” He tells her it’s because his hip was hurting two months ago, but he is a little unsure of his answer. Thankfully, this doctor did her homework and knew that my dad fractured his hip three years ago. It’s a totally funky answer to her question.

The neurologist then turns to me and has me answer questions in more detail, truly revealing the nature of the visit.

  • “When did you notice a change in your father?”
  • “Did you see a doctor about your concerns?”
  • “Did anyone else in his family have dementia?”
  • “Are you concerned for his safety?”

I look at both of my parents before answering, take a deep breath and give the doctor my answers. While my parents have heard me say these things to them directly, I know they won’t recall them, so some of my words will be surprising and even may feel disloyal to the family code to keep things private. I know I have to speak now and speak honestly.

The neurologist moves on and starts to apply a mini-mental assessment on my dad. My mom and I are looking at the artwork in the exam room. I tell her I think it looks like natural materials underneath a microscope. She says to her it looks like an abstract painting.

I start to describe what materials I think are under the microscope – the first one looks like a turquoise geode, the next a black marble. My mom is listening and then puts on her glasses. “Wow! Thank looks really different with my glasses on!” We both break into giggles and disrupt the test going on.

I think we both recognize the gravity of the situation but are trying to find a place where we can both meet and have an enjoyable moment. Escaped.