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.
- Parts of me are broken but there is a lot of me still standing. Like the duct-taped fence in the pictures.
- 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. You should meet my nurse practitioner. I never know what color her hair is going to be, or what is going to come out of her PHILLY mouth. I think her brain brakes need a tune-up, which is why I love seeing her. She gets me.
- 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? 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. Not sure 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.”
- 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?”
- 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.
- 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.
- Don’t obsess about saying the wrong thing. 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.
- 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!!