I've Got Dementia and These are my Family Rules
Eric Klein, CarePatrol of Chicagoland North
When Penny received her dementia diagnosis, she realized there may be a rough road ahead. The dementia journey can be challenging, and she immediately reached out to my CarePatrol office to put a plan in place for her future care needs. Penny had a unique self-awareness and ability to express herself. She was also aware of how others around her responded to her diagnosis. Our exchanges over the next few months were a fascinating insight into the early stages of dementia.
Penny knew something was not right way before her diagnosis.
She was having difficulty “finding her words.” Paying bills and dealing with numbers became challenging. She would “lose her geography” and often become disoriented and could not find her way home. Her family and friends would make jokes about her senior moments, but life went on. As soon as she had a dementia diagnosis, her world changed. People started treating her like a child. Her daughter started “baby talking” in a slow deliberate manner that made her mad. Her son took away her checkbook and credit cards. She was no longer invited to girls night out or Saturday morning breakfast with the ladies at Panera.
I suggested that we have a "friends and family" meeting so that Penny could lay it all on the table. She could tell the people that loved her how she felt, and they could express their feelings and possibly figure out how to best interact with a person diagnosed with the ‘terrible D word.”
“I’m not stupid. I’m the same person I was 2 months ago,” was how Penny started the meeting. I asked her what her family did that made her feel stupid, and she said “don’t argue with me, telling me no just makes me frustrated!”
No, I’m not your nurse, I am your daughter!
No, you don’t live in Palm Springs.
No, you don’t eat chocolate cake for breakfast every day.
No, your husband is not lost, he died 10 years ago.
We came up with rule number one:
Allow Mom (or the person with dementia) to live in her own reality.
Several other family rules followed:
• Don’t look mean when talking to Mom. Your body language is a strong indicator of your feelings. Uncross your arms and be pleasant and respectful. Don’t yell at her like she is hard of hearing.
• Eliminate background noise. It turns out that the environment had a big influence on Penny’s ability to focus on a conversation. Loud restaurants were a problem. Turn off the TV when the family gets together.
• Keep it simple. Give one direction at a time. Yes and no questions work well. Complex open-ended questions only created more anxiety.
• Don’t take it personally. Penny insisted she loved her family and never intended to make them upset. If she seemed agitated, she was not aware of it at the time. She asked for grace if she got worse, and redirection if she was being unreasonable.
The family meeting was a game changer. Penny vented her frustrations and the conversation broke the ice with the family. Penny’s relationship with her family deepened, and they learned how best to relate to mom as her disease progressed.
When Penny and I found a memory care community that would allow her to age in place and help manage her dementia symptoms, she entered the community not in fear, but with her head lifted high. She had the peace of mind knowing that she would be in a place that would provide the connection, engagement and sense of purpose that would allow her to navigate the journey ahead - with dignity, self-respect, and the support of the people who love her.
At CarePatrol, our job is to help you navigate these situations and to find the senior living or home care situation best suited for your needs. We understand what you are going through, and no one is better at helping seniors and their families deal with the realities of aging than CarePatrol. If you need help finding care for a senior, please give us a call. Our services are free, and we are here to help.