This article was written by Sharon Hall, who is the caretaker of her husband, who has been diagnosed with Frontotemporal Degerneration, and her elderly mother. She calls them 'The Twins.'
Last year, at this time, I was contemplating how I was going to move on with my life with just my mom and me. My husband, Rod, had become someone I did not know. I assigned so many reasons to this and none made a lot of sense, but it is what it is, I said to myself. People change. Maybe I have changed. Maybe I am trying to save something not worth saving. So I did what I do best, I planned. I planned for my departure. I sought help in therapy. I started saving in a separate account. I carefully planned my escape.
Then, in the beginning of October, my life changed. I was planning to make some sort of move by year's end. I had tried long enough, it wasn't working. Then a post appeared here www.caregiving.com, a post about awareness of a disease few know much about. My mother-in-law had this disease, so I thought, "I will watch this, as I know about this." I did not know about it. I did not know the early signs, I did not know my mother-in-law in the early days of her disease. I watched "It Is What It Is", a documentary about Frontotemporal Degeneration (FTD, formerly Pick's disease).
The world stopped. The breath seemed to leave my body. My husband had not changed intentionally, his brain was degenerating in the very places that make him, him. Deep inside me I knew. I knew this was what happened. I had spent the last year and a half struggling through the worst part of my life. Thinking that the man who was so tender and loving had turned into a beast, and maybe it had something to do with me.
It was not easy to turn that corner and assign the hurt, the anger, the pain to a disease. I made an appointment to have him see a neurologist at a center specializing in these types of dementias. I read voraciously on the subject. I watched every youtube video that mentioned FTD, I started to put the puzzle pieces in place. I begged to get into the neurologist early. I succeeded, we went and he was diagnosed with frontotemporal degeneration (FTD). He was sure he could continue working and driving, just to work and back. That lasted three weeks. He had to stop working, stop driving, and go on disability. He had tried to hide his symptoms for many years and they had caught up to him, once it had a name.
My life became filling out forms, having others fill out forms, calling to follow up on form after form after form. I had to sell our travel trailer, we had two cars and now only one driver. I had to negotiate the purchase of a vehicle. I had to now admit that it was not laziness that made my gorgeous yard go to weeds, it was apathy that is part of his disease. I had to hire people to do what he always did, fix things, take care of things, be there. I was a hamster on a wheel.
I knew I needed the support of others. I reached out to every group I could find with the letters FTD. There are some nice florists out there, but they did not seem to meet my needs. I needed to talk. Then Denise at www.CareGiving.com asked if I would like to start an FTD chat. I jumped at the chance. I went on social media and invited every person to join me here, every week. We have formed a "family," we support each other, listen to each other and try to figure out how to make it another day.
Then I attended the Association for Frontotemporal Degeneration(AFTD) conference (theaftd.org) with my husband. I wanted to know every grain of information I could get. I attended a break out session on behavior (a hallmark of FTD is behavior that is not "socially acceptable"). I listened to the smartest woman I ever met, Dr. Geri Hall. She gave the best advice I had ever heard, or read. She gave us hope. She gave us coping skills, she gave us information. I came back and said how can I share this with the entire FTD community? I reached out and asked Denise if she would consider having Geri (she likes to be called just Geri) on her podcast. She agreed. I then asked Geri if she would consider giving the FTD community 30 minutes of her time to share her wealth of information. She agreed! She is now doing more than that, she is going to do this monthly! (Listen to Geri's first podcast, Managing FTD's Challenging Behaviors.)
I am convinced that we, as FTD caregivers, need to be the voice of FTD. We need each other, for sure, we need to talk to those who "get it", but what we really need is to make OTHERS, outside of our FTD community, GET IT. We need to be a force to reckon with. We need to live life and not worry what others think of strange behavior. We need to go out and EDUCATE the public. Some will listen, some will turn away, some will scoff, but we can NOT give up.
Is it hard, damn straight it is. But without EACH of us educating those we meet and those we know, we will forever be just us, just talking to others who get it while society gets a free pass. Each of us needs to take someone by the shoulders and shake them, make them listen to the fact that all dementia is not your Grandma's dementia. This disease takes people in the prime of their careers, makes families split apart, devastates families financially, leaves little help for those who struggle every day to keep putting one foot in front of the other while grieving the living. We are allowing FTD to win. We are caving in to this disease. We have to RISE UP, we have to SHOUT, we have to be INVOLVED if we are to survive.
We can't look to others, we can't expect anyone else to accept what we have a hard time accepting. We have to SUCK IT UP, we have to be the voice. We have to bang on the desk of people's conscience. Call AFTD, tell them what you need and ask them how YOU CAN HELP THEM get it for those of us living in this hell. Be a part of the solution. Volunteer for AFTD, help them help us. Do not take no for an answer. Get involved.
Yes, I KNOW your life is chaotic, I KNOW you struggle to make it day to day, I KNOW, I live it, too. But unless I can make enough noise about FTD, nothing will change. I wrote a letter to my neighbors when my husband was diagnosed. I explained FTD. I told them what I needed, in a list. 1. If you have leftovers, bring them down, I get tired and not cooking one night would be helpful 2. Rod has given you many vegetables, now he needs you to help him weed ... You get the idea.
If not me, WHO? If not YOU, who? We are the face of FTD and we need to be in the face of others to get the help we need. Make noise, rise up, talk, talk, talk. GET INVOLVED in the solution, don't expect someone to hand it to you. ASK, INFORM, ADVOCATE, SHARE. Just do something TODAY to make FTD a talked about dementia. Let everyone know Alzheimer's might be the elephant in the room, but there are 100 things that cause dementia and FTD is a leading cause of those affected early in life.
Please join me. Please make a commitment to MAKE A DIFFERENCE. Start a local support group. Take the AFTD volunteer training and the group facilitator training. It is all by phone. If each of us educates just five people, think of how many more will know what FTD is and what it does to those who have it and those who live with it daily.
Commit to making ONE contact TODAY to explain FTD. YOU are the answer, each of us is the answer. RISE UP, beat this monster at it's own game. Bring it out into the open and talk about it, share your story.
Blog about it. Post it to social media. Make a difference. Turn this giant negative into a huge positive -- awareness.
Earlier on Huff/Post50: