Shit Happens
“FTD’s not so much of a loss of memory as it is a slow continual loss of function as the frontal lobe deteriorates.” -My Mother
It happened to me in my sixtieth year. I had always been physically active, and had enjoyed running my entire life. In my fifties I was involved in fitness classes, yoga, tai chi and qi gong. But a few months after my sixtieth birthday, I stopped taking classes and withdrew from all social activities. No longer interested in reading or any other activities, I noticed a blunting of my emotions and that I had trouble doing the simplest things. No longer could I cook or clean or pack a suitcase. Grooming and washing went out the window. Instead I started hoarding food around the house, pacing to and fro between my food staches. The other activity I could do was watch television. I was no longer the person I used to be. My face became a blank, vapid visage. I became unkempt clumsy and flatfooted. I gained weight and lost my ability to taste and smell. Every simple task was difficult. I started biting, and thus bruising my arms. I wanted to die.
A couple of months before my sixty-first birthday, my husband took me to a brain clinic. I was diagnosed with FTD.
As my energy ebbed, I stopped pacing and hoarding food. Sitting in front of the television for up to 15 or 16 hours became my life. Horrified at what was happening, yet in an apathetic stupor, I could do nothing but observe my aberrant behavior.
During the next three years our two younger daughters moved out and married. (Our eldest daughter married before my sixtieth birthday.) My husband closed his office so that he could work from home. At this point, we were living without any family around. Our daughters, now settled, plead with us to move. It was time to go, so my husband hired a realtor and dealt with the mess our home had become. We moved back to our home state where our youngest daughter and husband lived, along with the rest of our family, excepting our two older daughters and their families.
We’ve been in our home state for about 6 months now. Our daughter and son-in-law put us up until we could move into our house, then helped move us in, cleaning and organizing everything. I could not do a thing but watch Netflix on our new flat screen television which our son-in-law set up.
Thanks to digital media, I now have lots of content to choose from, which my husband helps me with. He still works from home and is with me 24/7. Since we were able to start fresh with a clean and organized house, my husband has stepped up, with the help of a Roomba, to keep the house clean. So clean in fact, that my mother asked who our cleaning crew was. I pointed proudly to my husband!
I am now entering my sixth year with FTD. Even with the love and support of my family and the addition of two grandchildren, I get up every day wishing to die. My mantra is, “I want to die” but it comes out grammatically incorrect: “I wants to die” or “I wants to fucking die.”*
As my son-in-law gently reminds me, “It could be worse.” He is correct- I am fabulously fortunate. Nevertheless, unlike most people, I want to die. Fucking yes!
*My mother never cursed until FTD progressed, resulting in lack of impulse control.
Part Two: daughter’s view of FTD
Frontotemporal dementia, like other types of dementia is a devastating condition. When there is pathology to the prefrontal cortex the person experiences changes in social behaviors including grooming and ‘the social’ pleasant smiles are incapable of being formed, even when attempted. Ever so often, a genuine smile breaks through; I believe this is due to the amgydala, which might respond to meaningful stimuli.
Pathology associated with the temporal lobes results in language changes and loss of impulse control, one of the most initially shocking included the adoption of profanity. Growing up, my mother never cursed. These words, when spoken by my mother, to me have no offense. I view these curse words less like ‘profanity’, instead they become honest communication of how devastating everyday is living with the loss of oneself. I can’t think of anything much worse than no longer being the person one used to be.
I believe the desire for death comes from a desire to escape from the progressive behavioral changes and abnormal neurological movements (tics, gait changes, the inability to smile socially); especially since the person has complete awareness and understanding that they no longer act, talk, or behave normally. My mother, who was always competent, well dressed, fit, and social, finds these changes embarrassing and horrifying. Intelligence, insight, and memory remain intact- without deficit; which makes the disease that much more emotionally painful to my mother. And the only escape is death. I understand this. I tell my mother that if I had FTD, I would want to die too.
The time my mother has left with us is precious to us all. She remains the most loving and supportive mother. She is also the most honest. The social filter that most adults and teens exercise is lost. We find she now vocalizes uncomfortable truths with naked honesty. She often says what I am merely thinking. With FTD, honesty dissolves the phony fascade which us ‘normal people’ often tend to accept in complacent silence- words that are suppressed by our prefrontal cortex. There is no meanness or spite behind her words. I appreciate her genuinity and honesty, and from this, I realize I desire more honesty from others and society at large.
I always look forward to seeing my mother. I look forward to hugging her, holding her hand, and talking to her. I love calling her on the phone. I love to tell her that I love her. And that I am happy she is still here.
Part 1 written by my mother, who requests anonymity. Part 2 written by me, her daughter.
