Frontotemporal Dementia

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Frontotemporal Dementia
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    Community Voices
    Community Voices
    Community Voices

    When he yells, I revert to a cowering, crying mess.

    Some 30 years ago, I had Stockholm Syndrome with an abuser for 3 years. I'm now going through EMDR therapy so that I can have a sexual relationship with my fiance without being triggered.

    Well, this morning, thinking I was doing us both a favor, I made coffee in my drowsiness, put away dishes, and went out on the porch.

    Five minutes later the door whips open and there's Rand, with scalded hands. Did you empty the pot!?!!!! Thanks for burning me. Then he slammed the door in my face and went back in.

    Well I burst into tears! I have frontotemporal dementia, and have had a stroke in the years since I escaped my captor. I can't remember everything, especially upon just waking!

    Well, moments later, my fiance busts through the door and yells, "And thanks for helping me clean it up!"

    So I came in, left him out there, got him a cup of coffee, because he still hadn't done that, passive aggressively set it down next to him, and came in here to tell you.

    I am triggered by the yelling and the tension. My first inclination is to go back to bed and hide in there all day, freeze, if you will. My second, to get the hell out of here.

    I've already apologized profusely. I'm sorry my brain doesn't work right, anymore, especially just out of bed!

    He insists I give him all kinds of leeway for his sad past. Why can't he do me the same kindness?

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    Community Voices

    The Complexities of Frontotemporal Dementia

    It’s 5:30 AM. My body is still, but my mind is screaming. This feeling of familiarity is not comfortable.

    I find myself rapid cycling through the 7 stages of grief in a given day; I’ve become quite the multi-tasker. Conversations turn into lulls for no particular reason other than that my mind is straying off to the Sunken Place. “Snap out of it,” I’ll think to myself. “You’re being rude.” Sometimes I fear I come across as insatiably ambivalent when interacting with others, but I struggle to stay mindful in other’s realities when the crushing weight of mine is suffocating me nearly every second of the day. So I go through the motions. Ambiguous loss is painful. I re-live losing my mother every day and have been for the last 5 years, and it doesn’t get better. That’s a harsh pill I’m forced to swallow.

    Sometimes I fear judgment for how I process my mother’s #Dementia (Frontotemporal Degeneration, specifically). I find myself being angry towards girls tagging their mom’s in Facebook posts and the irrelevant 3 comment exchange that they have beneath it. Seeing sea glass, her favorite, sends me into a spiral. Recently I cried because I couldn’t gossip with her about the Royals. But so it goes!

    I’ll fixate on things I did wrong as a child, the hurt I caused by rebelling, the unconditional love she gave me when I sobbed on her chest at 16 apologizing profusely, yet she never once said “I told you so”. That love is still there, burning as strong as ever. So why do I feel so guilty for missing someone who’s right in front of me?

    The grief surrounding #Dementia is so complex and isolating. Some days I’ll have the mindfulness to be able to reflect on the reality of the situation and to accept it for what it is. Other days, I might be slighted by the smallest inconvenience, yet it’s enough to break me down and put me back in bed at 2PM. I chastise myself. I cry. I soothe myself, and I start over.

    My mom lives a simple life these days. Living at home still with my wonderful, kind, patient father, she goes to day treatment groups and music therapy, pre-#COVID19 of course (things she once provided for her clients), gets endless care packages from friends and family, and spends her evenings rewatching Gilmore Girls until it’s time to go to bed. That was always one of our favorite shows to watch together. She comes alive when she’s with her family, watching silently when she’s alone but laughing along with the dialogue if we’re enjoying time with her. Her mind has always been her worst enemy, something I think I inherited from her- but these days she seems very content and enjoys the simple things in life. She’s ignorant to the chaos of the world and the flaws of our society. Her universe has shifted vastly, so we shifted with her. We communicate with hugs and endless kisses since her speech has been taken from her.

    I remember some of the last times we had a verbal conversation- I was staying with my parents at the time and it was a rough point in time for me in my personal recovery. Lorelai was on TV, witty as ever and my mom enthralled as usual. I barged into the living room bawling my eyes out, sitting next to her. Her animated eyes darted from the tv to me, reaching out to me instinctively; which admittedly made me cry harder. I wanted to have her talk me down more than anything, but laying in her arms was good enough for me. She held me for a few minutes, softly patting my back and kissing my forehead in increments of 5. I always count.

    I melted.

    “What’s wrong?” she slowly whispered, in between kisses. And that was enough for me. I lost it, just crying about everything. She didn’t need to say anything back. She didn’t need to give me an ultimatum, as much as I wanted to hear her advice. In that moment, I knew my mom would always be there for me, #Dementia or not. I vented, cried some more, and she just kept holding me and patting my back. 23 year old me at the time reverted back to my childhood, and in that moment, I felt safe. We stayed like that for a few minutes in silence. I listened to her heartbeat and counted the freckles on her chest. It was like she had an entire galaxy on her skin. She’s so beautiful.

    Then the intrusive part of my brain reminds me that she has #Dementia. One day she won’t be here.

    I chastise myself. I cry. I soothe myself, and I start over.

    The most memorable conversation we’ve had so far in the grips of her #Dementia was on her birthday last year. There were no words exchanged on her part.

    I went over to my parents house to see her, and I became a basket case again- but no fear! She saved the day with more kisses. Something I think about more often than I’d like to admit is the crushing regret I have regarding my past and my mistakes. I’m not perfect. It’s taken me 25 years to get to this position of self-actualization. Regrettably, a large chunk of my teenage years were spent… un-traditionally. I lost a big part of my childhood because of it and I’ll keep myself up at night replaying scenarios from 10 years ago or harsh things that I said, and I become so hollow. I thought about this guilt a lot on her birthday, which was selfish. I told her I hated that I wasted so much time pushing her away and that I’ll never get that time back. So I cried again, but this time, she cried with me. She reached out a little harder and pulled me in a little faster. Her kisses were a little more aggressive. I laid on her chest once more, for a few minutes longer. It reminded me of a book she read to me when I was younger; “as long as you’re living, my baby you’ll be.” I will always be her baby. In sickness and in health. And she will always be my momma.

    Some days I struggle. Some days I thrive. I find that the best way I can honor her is by being as present as possible. Even still, she teaches me the most profound lessons. Throughout this battle, she has taught me to be kind, to be patient, and to love as hard as you can in order to have little to no regrets. She wakes up every day with a smile on her face, loved by her husband, adored by her children. I think she knows that too, so her journey is gentle.

    For me, the journey is isolating, so I found solace in peer support. It was vital to my #MentalHealth. I joined an online support group for family members of loved ones with FTD. I was immediately flooded with support, and it was relieving. Questions that I had for years were answered, and more importantly, I found people who understood my pain. There was a place I could actively process my grief without fear of judgment or claims to be too morbid. Just this morning, I posted about another sleepless night, and immediately the comments started flowing from all over the world. There is a solidarity in grief despite it being different for every person. I find comfort in that.

    As I type this, I can’t help but feel close to her, being the published writer that she is. I look at pictures of her at my age and see the scary similarities. I catch myself laughing like her, and I smile; she is me and I am her. She’s in my DNA. She was my blueprint. Who I aspired to be growing up. I’d like to think I’m just like her, just with my own funky twist.

    My grief is different every day, but that’s okay. I know that I do not walk this journey alone despite the fear the grief instills in me. My beautiful, resilient, gentle, warm, matriarch pumps through my veins and showers me with kisses that somehow mean something different to me every time. Maybe tomorrow it will be easier to breathe- and like clockwork, I will soothe myself and start over, just as I have been.

    #MentalHealth #COVID19 #Dementia

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    Community Voices

    Mom recently diagnosed

    My Mom was recently diagnosed with frontotemporal dementia. Neurodegenerative diseases run in her family and I had to see my uncle die from one. I really can’t bear to think of my Mom going through that 🥺 I dream of my Mom as how she was and then wake up crying because I realize it was just a dream. I talk with her and look into those blank eyes and then go hyperventilate in my room and it takes me an hour to settle down 😰 I don’t know how to do this. Everyone in my family has some condition, including myself, and I just don’t know if I’m strong enough. I don’t feel strong, I just feel broken so broken
    #Dementia (It automatically put this in - is this how it is linked to this group?)

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    Community Voices

    Mom recently diagnosed

    My Mom was recently diagnosed with frontotemporal dementia. Neurodegenerative diseases run in her family and I had to see my uncle die from one. I really can’t bear to think of my Mom going through that 🥺 I dream of my Mom as how she was and then wake up crying because I realize it was just a dream. I talk with her and look into those blank eyes and then go hyperventilate in my room and it takes me an hour to settle down 😰 I don’t know how to do this. Everyone in my family has some condition, including myself, and I just don’t know if I’m strong enough. I don’t feel strong, I just feel broken so broken

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    Community Voices

    feel scared#

    Have began to feel scared that something bad is gona happen.
    Maybe Death not sure.
    My mum jus been diagnosed with
    Picks disease also known as (frontotemporal Dementia.)
    since then my head been all over place.
    l have fibromyalgia, depression, anxiety etc etc. herniated discs .
    Feel sad not able to get out.

    16 people are talking about this

    Living with Early Onset Dementia: Our Battle with FTD

    I have waited so long to write about this that the fire within has settled. I am prepared for the long haul, but also, not prepared at all. How do we prepare for the emotional, mental and physical challenges to come? This is not a situation that we ever could have imagined. We have been slowly adjusting, but it is still surreal. My 52-year-old husband, my intelligent, loving, funny, thoughtful husband, has frontotemporal dementia (FTD). Looking back, symptoms may have been presenting as early as 2012. What we originally thought was depression was probably the beginnings of this awful disease. By 2015, it had progressed into difficulty with word recall and minor memory issues. His doctor tested for every possible medical cause, and eventually sent him to a neurophysiologist. Three years ago this fall, that specialist told us that my 49-year-old husband may have early onset dementia. It was hard to believe it was possible, but in the back of my mind, I knew it was true. He had been forgetting things I told him more than usual, and he had seemed a bit “off” for a while. The tests showed he had a very high intelligence level, but his cognitive abilities were not matching up. By fall 2016, he had further testing at a memory clinic, and we were told that there was a high probability it was FTD. He is being treated accordingly, but there is no cure. In the last three years, we have been making as many memories as possible. We have traveled to Europe, Africa and South America. One summer, we took a minor league baseball road trip in honor of his favorite movie, “Bull Durham.” We stopped and visited with many friends along the way, friends we hadn’t seen in up to 25 years. We took a weekend trip to see one of his favorite football teams, the Kansas City Chiefs. We are living out our retirement dreams before we can’t anymore. Two years ago, he went on disability from work. It was not in his plans. A disease he has no control over makes him feel like less of a man. He thinks he cannot take care of his family like he used to, but he has no idea how much he does. He goes to yoga most days, and I go with him three to four times a week. We were told it might help slow the progression of the disease. It has, and along the way it has also helped me to get in shape and strengthen, both mentally and physically. He grows a vegetable garden in the summer, and with his green thumb, we have an abundance of fruits and vegetables. He has taken up much of the family cooking and baking, making me look like a amateur after almost 30 years of marriage. There are many ways to try to slow the disease. Memory games, puzzles, exercise and small motor skill activities are a few. We will do anything to get as much time as we can, so he tries them all. He taught himself to knit last December, and by January he had made each of the kids a scarf– intricate scarves with difficult stitches that look amazing! By March, he had finished a multiple panel afghan, and by May he had made me a varsity-style hooded sweater that looks like it was crafted by a professional. Last week he started knitting me socks. He has set the bar so high, I’m hesitant to even try to learn. Unfortunately, he can’t do everything he used to. Over time, he loses the ability. We have seen these changes. They are happening slowly, but they are still happening. We might be able to slow the roll, but we cannot stop it. There is one thing we won’t let it do though, and that is bring us down without a fight. FTD has brought us to a place we never thought we’d be. We have lost, and we have gained. It is a blessing and a curse, all at once. We are experiencing retirement in our fifties. We have been blessed to travel around the world. It is all temporary though. One day, and we have no idea when, we will be living a nightmare. There is an enemy within him, and it is frontotemporal dementia. Follow this journey on Liv, Love, Courage.

    Community Voices
    Community Voices

    I'm an Army Veteran with service-related #ALS #FrontotemporalDementia . If I'm going to go out anytime from now I'm proud that it's because of my service in the Army. It was one of the best things to happen to me after being a witness or victim to traumatic events as a child and a few as an adult.  It was a life changing experience that took me from the system to the Army.  I was a survivor and ready for something better.  I learned a lot of life skills I'd missed out on with me being the parent as a kid and doing the best I could while mom partied after work as a cocktail waitress, sometimes bringing it to the house.  The Army led to marriage, a wonderful daughter, a divorce, and a few years later, a wonderful relationship for all of us.  My daughter doesn't remember much before the relationship.  We moved and I was so excited because wife had June and Ward Cleaver with an older sister who had 2 kids.  I thought I was going to have a family.  I learned quickly that feelings weren't talked about and they didn't get together except for occasions.  I grew up with family getting together because they wanted to hang out.  After my SIL divorce and marriage to someone else changed things and we started hanging out because we wanted to.  I'd never been happier.  We were going out, playing pool at the wings restaurant or camping every month.  I had a great job that I loved and life was good.  

    On April 12, 2012, I hurt my back pretty bad and put on Workers Comp. The dr was giving out pain meds, sent me to physical therapy and bounced me back and forth between the back dr to neurologists.  The more I went, the more I hurt 1/2 way down my back to my toes and I was having muscle twitches or spasms that would send my legs up in the air.  On Dec 31st, 2013, we finally settled for less than a year's pay and I was using a walker.  

    My family dr was waiting with a referral and had to go through a few drs before finding a neurologist that started a series of testing that lasted a year.  They sent me to pain management and did a test that listed all the meds that would or wouldn't work for me.  They now have me on the right meds.  We went to the Dr one day for a follow up and he walked over placed his hand on my arm and told us I had ALS.  Y'all, we didn't know what it was except for what I knew from the Gary Cooper movie.  I was referred to the VA for treatment.  I found out that vets are 2x as likely to get .

    I'm 5 years into it, in a specialized wheelchair and can't use my legs. The muscles won't hold me up anymore and losing the muscle in my arms. I'm also losing the most important thing right now; support. I don't understand friends and family that have decided I'm not important enough to call or visit. I don't want to go out w ppl mad at me and don't know why. Imagine fighting for your life while not being included.  I don't have a life with a purpose, lying in a hospital bed.  I don't want to be abandoned again, just accepted. #ALS 


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