Dementia and aging, part 1
One of the things people don’t know about dementia is the person’s ability to fool you. Social graces, humor, flirtation, and incredulity are all part of their crafty skills. They “seem” fine. How one can have dementia and yet have social graces has to do with the progression of the disease. The short-term memory goes, the long term stays along with the ability to say please and thank you.
My mom could flirt with her doctors, strangers, waiters, and seem absolutely fine. Her affect made everyone happy around her, but also easily fooled people who weren’t part of the day to day.
In the early stages of the disease, my family was fooled by mom’s mannerisms on the phone. She sounded great. She sounded like the firebrand she always was. However, visiting was different. Mom’s residence had a mix of newspapers, bills, old mail, undeposited checks and all manner of values mixed together. Her fridge was a nightmare of rotten food. That wasn’t how she was. That’s how she became over time with dementia. She stopped paying her bills. She believed she no longer had to pay taxes. She was agitated, short-tempered and easily confused by things that required higher order thinking.
Mom was joyous when we weren’t confronting her on her business. If I knew then how hard it was to be in her head, I would have been kinder. Had I known how afraid she was about losing her memories and her power over her own life, I would have practiced more compassion. With that said, I invited her into my home to be her caretaker.
I learned, as her mind was deteriorating in the ability to make new memories, the ability to have a filter, and the ability to manage higher order thinking, that she was scared to death. She knew what was happening. She knew when she made no sense. But first, she tried to hide it. She wanted to protect herself. Intermittently, she could cover for the dementia, but the dementia was real.
My mom was a business person. She was savvy with math, percentages, and long term planning. She understood things were going poorly for her mind, and she agreed to see an attorney and set her last wishes to paper. It was the kindest thing she could ever do for us. She was still “there” enough that she could make decisions and explain her intentions. She wasn’t symptomatic enough for diagnosis, but the writing was on the wall.
If I could give anyone advice as they navigate the valley of dementia, it would be to get the end of life paperwork completed. It’s not the sexiest thing you will have ever done, but it’s necessary.
You need a will, a Power of Attorney, a health directive, end of life wishes, and a lot of love. My siblings and I all wanted what was best for mom, not what was best for ourselves. For us, the attorney was experienced in the pros and cons of these arrangements. An experienced lawyer can see how things can become complex and misused.
As an aside, when my grandmother lived with us, and later passed away, she had no will, no plan, and no direction for her family. Her children drew straws to get belongings, which led to years of bad feelings. She didn’t have a plan of what to do with her body. I still remember the way the funeral parlor took advantage of my mother’s vulnerability and made her spend too much on the casket. I still remember walking through a valley of caskets with the well-suited funeral director. The adults were competitive, bickering, and ugly over a tiny old ladies’ few precious things. None of my siblings wanted that. We learned how divisive things could get without a plan in black and white. We didn’t want to fight over dumb stuff; we wanted to love our mom.
There are concrete and emotional things you can do to address the inevitable end of life. First, move toward accepting the finite nature of the body. This means not shying away from end of life plans. Secondly, even if your loved ones aren’t decrepit, nor are you, you can’t know your fate, and must face the need for plans in black and white. The kindest thing mom did years before it was necessary was to see a lawyer, talk about her wishes and get them notarized. The plan she made led us to make concrete decisions without second guessing our decisions. We could mourn without the baggage of rivalry or power struggles. Yeah mom!
If you suspect your loved one has dementia or is just getting up there in age, it is in your best interest to get your loved one’s wishes written in a legal document. If you suspect your family is not on the same page emotionally, it’s time to come together as a family and put your ridiculous self-involved feelings aside.