As 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.
I 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:
I don’t want to repeat exactly what she said because it’s so nasty and not indicative of the woman who raised me. I’ve tried ignoring her, changing the subject, taking her head on with the facts and all of those typically ended in some type of misery for one or both of us.
Today, I looked her in the eye and just told her “That’s so sad. I hope you don’t really believe that. Do we have to have this conversation?” Before my mom can reply, my dad jumps to the rescue and says “No, we don’t need to have this conversation.” I quickly start a new topic.
It’s been so frustrated tying to help my parents when my mom dishes out false facts and dares us to counter or discredit them. I work very hard to employ my three go-to tactics when I visit my parents. Today, they worked. Succeeded.
This is just one post in the story of how the author, Kay Bransford, is working to help her parents. When her mother called her three years ago wondering how to get money into the bank, Kay embarked on a six-month journey to gather, organize and document the personal, financial, medical, online and household details she needed to maintain their day-to-day lives. From this experience, Kay launched MemoryBanc and now provides a workbook which provides caregivers with the tools they need to easily support their loved ones.
Dread fills me. I know that no good is going to come from opening up the letter. But I open it anyway.
It’s from my dad, in his distinctive writing, blaming me for something I did not do. I immediately call both of their homes and leave them a message.
I’m really mad … and really hurt.
My parents have no short-term memory, yet the one thing they remember about me today is that I betrayed them. They wrote it down, sent it with a dual signature and dropped it the mail. It explodes in me, more than on me today.
I know I will never be able to right this. I try to soothe myself by considering that my mom confabulated a story and has convinced my dad of it – but that still doesn’t make me feel better.
We keep hoping that our repeated letters, calls and meetings will seep in and they will eventually acknowledge and reorganize their lives. We don’t even seem close and already I’ve become a horrible daughter. They say it only gets harder. Incapacitated.