Mom Really Did Play the Saxophone

TheSaxophonePlayerAs I work through the final plans for mom’s funeral, I’ve been going through photographs and land on one of her in a marching band uniform with a saxophone in hand. For more than a decade, when I was chatting with mom I often felt like she was recreating history. Some stories remained the same as her dementia progressed, but often there would be a statement or two that just made me go “Hmmm, O.K.”

As I was adapting to spending time with mom in the earlier stages of her dementia and before it was diagnosed, I would correct statements mom made that I knew were not true. I would like to tell you I quickly learned not to lock horns … but that was not the case. I finally realized that mom believed the things she was telling me and just started to go along with the conversation.

When I was getting a poster ready for the “life celebration” reception, I pull out a photograph of mom with a saxophone. I makes me laugh out loud. When mom mentioned she played the saxophone, I just thought it was a confabulation. Now I learn that she was telling me something real about herself all along. Humbled. 

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?

 

Letting go of the truth

truthpicI was raised to always tell the truth which some people find refreshing and others find crass. It’s taken me a while to understand how and when to share the truth, a partial truth and when to just keep my mouth closed.

As my family has been on the dementia journey the truth always seemed to create a roadblock for me. It took me months to accept and understand that what my parents said they fully believed was reality. At first I’d argue with it to try to demonstrate just how off their brains were behaving, but it only created conflict and made my mother distrustful and my dad would shut down.

On the other side of this rough road we traveled, I can now listen to and talk with my parents even when they are sharing information that is fictional. Now that my parents are in Assisted Living and I’m not worried about their safety or risk of being taken advantage of, I can just enjoy the time I spend with them. Matured. 

 

To revisit some of my past struggles with this, here are few of my stories:

How I Disarmed my Contentious Demented Mother

How Different Each Dementia Can Be

Accepting the New Truth from those with Dementia

Do we tell mom and dad they have no short-term memory?

One of the things that has struck me about this journey is that when the psychologist finally confirms both parents have no short-term memory – I wonder for a few moments if we should tell them.

For more than a decade, my mom always told us we wouldn’t have to worry about them; they were going to take care of everything. They didn’t want us to have to go through what they went through. Both of my grandmothers had some type of memory issue the family managed.

So now that we are struggling with how to help my parents since they don’t believe they need any help, I wonder what I will do to make sure I don’t repeat the cycle. I wrote myself a letter that my children can have delivered to me if I’m repeating the cycle. I have made several copies in case the first few don’t work.

Recently, I had lunch with a friend who said that his wife wants to make a video confirming that if she gets dementia and has no quality of life, she wants the option to end her life. She’s watching her parents languish and just doesn’t want that to happen to her. He wanted to know if MemoryBanc would store the video. I told him absolutely.

While the miracles of modern medicine have improved the quality of many lives – the fact that it also extends a life that isn’t worth leading must be the curse. While this conversation seems silly – it’s really a quite serious and important discussion to have now with your spouse, siblings and (adult) children.

I decide not to tell my parents. They won’t remember and who wants to really know their memory is slipping away? If I’m in the same position, the only person I want to hear it from is myself. My video session is in the works. Compelled.