My Experience With FTD

This week is World FTD Awareness week which means many news and social media outlets are talking about the disease our mom has. It is such a huge relief that this form of dementia is being talked about because it’s one of the most heartbreaking and scary diseases out there. Of course, there are many diseases that fall under the same categories, but there is something infamously unique regarding FTD. Think of a perfect working physical body. One that can move, eat, breath and for the most part, function. Think of yourself actually. Now take away one of the biggest components that make up the person that you are. Your personality. Everything that encompasses your personality is depleted. Your laugh, sense of humor, your compassion, your rage and anger, your dreams, desires, your sadness, your happiness, your passion, your zest for life…every single and I mean every single detail of who you are goes away. You simply exist because you are alive and breathing. You can no longer function or care for yourself so you need full-time care. Now the real titty twister here is that it gets you while you are still young and vibrant. Our mom turns 65 next Tuesday and she is cared for 24/7 and mostly resides on her couch. She doesn’t get to experience the beautiful colors of fall like the rest of us. Of course, we take her for walks and she sees the trees, but not an ounce of her shows any excitement like how every ounce of her would have in the past. Let’s put it this way, if I were to tell her I was pregnant (I am not) I’m fairly 100% certain she wouldn’t budge. If I were to be completely honest, it’s essentially brain damage. Except with accidents that often cause brain damage, no one is really sure how FTD begins. One of the most jarring questions I get asked, “is it genetic?”. Well fuck. I sure hope not. But alas, I’m sure that is part of the issue. So, what if it is? How do we treat it? Along with genetics, lifestyle and a lot of uncertainties play a role. When we brought June in and received her diagnosis we asked what do we do next. “Well, you go home and prepare for care.” That’s it, ladies and gentlemen. Go home. Figure it out. And guess what. We did. It was not easy to get where we are today, but over time we have developed a system that is seemingly working. With the help of the entire family which is led by our fiercely brave and incredibly strong oldest sister, Michelle, and with the help of our amazing father, and three incredibly compassionate and wonderful caregivers, we are getting along and June is doing well. Friends and family often ask, “how is your mom?”.  Mom is good, she seems happy. It’s kind of funny because to be honest with you, she’s great. I mean, she can’t bathe, go to the bathroom, cook or take care of herself, but she’s in great hands. It’s okay to ask how the caregivers are doing. In all honesty, it’s hardest on them…on us. She doesn’t realize what is going on. That perhaps, is the only, if there were to be one, silver lining when it comes to FTD. I know other people going through the same thing as us and from one caregiver or child with a parent with dementia or sickness to another, I know what it feels like when someone reaches out, randomly calls or asks how I am doing.  It’s just a very human thing to do. I have to share this story with you because I don’t think I will ever forget it. And if I do, I’m screwed! (Just a little dementia joke.) I was at a music fest a couple months ago when one of our friends on Anthony’s side came up to me and gave me a giant hug. A big ass bear hug. And then he just kept hugging me. I giggled and squeezed him back when he whispered: “I’m thinking about you”. I was so surprised. It was such a profound moment of a human showing love and compassion I thought my heart was going to explode and glitter was going to pop out. And it’s not like I was going to cry, I was so happy and grateful it made my day spin. It’s the little things. But then again I’m not going to lie, get me on an off day and ask how I’m doing and you better have a glass of red and a box of tissues on hand. As my girl, Devon once said, “tears are truth!”.

FTD is a bit like a death. There is a magnificent void that can never be filled and at this moment in time, medically, it will never be refilled. I miss my mom so much I can’t even begin to tell you how hard this disease is to emotionally deal with and how my heart literally aches. It actually hurts. I can feel it. I can’t imagine a more shitty way for a human to exist on this beautiful planet. As with all things, some days are better than others. I can go visit her and walk in smiling and leave happy, other days I must leave as soon as I possibly can because the tears are milliseconds away from rolling down my face. I spent the night last month and I was just so sad for her. I couldn’t help but cry, I was bawling. I was utterly heartbroken for her. Was? I am, every day of my life a large part of my heart is so sad for her. I looked at her and said, “Mom, I can’t stop crying, I am so sad. I’m so sad for you.” (queue the ugly cry) She looked at me with a look of complete blankness and turned her head back to the television. That is what this disease entails. That is why this week is so important because no one, not my worst enemy if I had one, should have to exist like this. Recently a prominent man in our city took his life after receiving a diagnosis of FTD. I worked with him years ago…I was beyond shocked and sad, it greatly affected me. He was a good man and he helped me during a huge moment in my former career. His story is heartbreaking. I’m going to say this and I have written about death with dignity…but I understand his decision. I really do. With FTD there is nothing hopeful about it. There is actually zero hope. It’s like a death sentence but you’re still alive. Sounds fun, right? But thankfully with it being researched and recognized as a major epidemic, that may change over time and I am extremely grateful for the men and women doing that side of the business. The only thing I can do on my end is to raise awareness and tell our story.

As sad as this disease is, I do my very best to remain positive and as I have shared before, go on this journey with my mom as it is meant to pan out. I have found certain things that help. For me, it’s meditation, a regular yoga practice, a positive mindset and just as much well being I can give myself. I want to be able to hang out with June without crying. It’s important for me not to get lost on the dark side of this disease and to not stress about the what ifs. It’s imperative to stay present. In regards to what June and I do together, these days we enjoy coloring still. Movements and counting. And just as of last week, reading children’s books! I accidentally found out she can still read while I was laying out the mail, and if reading Dr. Seuss is the only way I get to hear her voice, then so be it. I’ll take it. I cherish the moments I have with her, especially when out of nowhere when she will grab my hand to hold or rub my back.

Regardless of the situation, our tribe sticks together. She may not say it, but deep down I know she feels the love we all give her.

Keep up the hard work FTD researchers and thank you so so much.

Love it. Live it. Share it.

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