NOTE: I originally ran this post 14 months ago. My inspiration came from 3 wonderful people who had been diagnosed with behavioral variant frontal temporal dementia. Their families were struggling with the behaviors and worse, with judgmental attitudes from their communities. All 3 of the individuals with dementia had some level of awareness of how differently they were treated when out in the community. Since that posting, all have passed. Their words still echo in my thoughts…and I share them below.
Dear Friends and Family,
Here are 10 things a person with FTD wants you to know:
- I have a brain disease. I am still me. I have some memory problems, so I repeat myself. A lot. I forget things, like shutting the door or what year it is. Actually, I don’t care what year it is. Not sure if that is me or the disease. I can no longer drive. Well, I CAN drive and I think my driving is just fine, but everyone else constantly fusses at me about driving. See? This disease has robbed me of my ability to grasp and understand my own weaknesses while accurately realizing my strengths.
- The disease can rob me of my words. I may either speak slowly and with difficulty, or fast and easily, but either way–my words may not make sense. I may say “cat” when I mean “couch,” or “truck” when I want to say “fork.” The connections between my mind and my mouth are fraying and breaking down. Please do not correct me or laugh at me. If you pay attention, you may see patterns and learn my language.
- FTD makes me forgetful, not stupid. I am VERY AWARE of how differently I am treated. Like a have this horrible, CONTAGIOUS disease. Yeah, the disease sucks but what sucks more is being shunned. My disease has destroyed the parts of my brain that, in the past, put “brakes” on my words and actions. And don’t judge, everyone one of you has had that moment where you blurted out something that was better left unsaid. Some of you may not have my disease, but your “brakes” seem a little light. Anyone who has ever blurted something out without thinking has done what I am doing, although I’m doing it on a grander scale.
- Be patient and forgiving with my behavior. If a person driving a truck that suddenly lost its brakes was involved in an accident, would you blame the driver? No? So don’t pass judgment on me or my care partner! We used to go out a lot with friends and do things. Not anymore. My poor spouse, who is completely alone caring for me, is afraid to take me anywhere because of how YOU will react if I say or do something odd. I want to come to church. I would love to eat out with friends. I miss visits from my family (I think they are afraid that they are going to get this disease because our mother and grandfather had it, so they avoid me to pretend the disease does not even exist). I think my spouse/caregiver would be more likely to take me places even everyone was more understanding.
- Reach out to us without fear. If you say something and I become upset, change the topic. I’ll forget what you said anyway. The nice part about this disease is that it is full of second (and third) chances. Not sure about what to say to me? Try some of these:
“Hi, how are you?”
“Glad to see you.”
“That’s a nice shirt/tie/dress.”
“I’ve missed you.”
“I’m happy to see you.”
6. When offering to help, please be specific and follow through. I think many of you really do want to help us. My spouse is a bit proud and does not want to bother anyone. Not me, I’ll come right out and say it. Here are some ideas
“How about I visit with your loved one while you go food shopping. Let’s figure out a day and time this week.”
“I’m making lasagna on Wednesday. I can bring some other and we can have dinner together. Would that work?”
“The gang wants to help out. How about this Friday, the girls take you out while the guys visit?”
7. Understand my limits and be kind. A part of my brain is not working, so the rest of it has to work even harder. It’s like working a shift where half of my coworkers are out with the flu; the rest of us have to work twice as hard so we are exhausted at the end of the day. Big, noisy crowds and too many people talking at once exhaust me and I get cranky. If you happen to see me in a large gathering, please sit with me somewhere toward the fringes. This way, I can enjoy the experience without being overwhelmed. Likewise, if my behavior is interfering with others’ enjoyment, gently and kindly taking me to a quieter place preserves my dignity, too.
8. No matter how many times I tell the same joke or repeat the same sentence, please act as if you are hearing it for the first time.
9. Please forgive and understand my relaxed physical boundaries. My grasp of socially acceptable behavior is very loose. I may hug you after meeting you for the first time, or I may start to talk with your child in the grocery store. I do not mean any harm or disrespect. The part of me that desires connection is stronger than the part of me that knows restraint. If I am making you uncomfortable, please simply step back and let my care partner know in a kind and gentle way: “Sorry, I am not a hugger.”
10. Be my guardian angel. Now that you know that I have a brain disease, please look out for me. I may start to walk over to the bathroom and get lost, and start to cry. Newcomers to our community may gossip about my behavior. Please be my strength and my rock. “For whosoever did this for the least of my flock, they did it for me.”
This blog is dedicated to all of the wonderful people I know with FTD and their valiant caregivers. I HEAR YOU and I hopefully captured your “wish list.” Please print this blog and hand it out to everyone in your community. If you want to reprint for a newsletter or church bulletin, please contact me for permission. Together, we are going to make FTD our b*tch!!
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.