There Are a Lot of Bad Days

Frontotemporal Dementia is a roller coaster you are forced onto without your permission. A wild ride that jerks you around and makes you feel out of control, nauseated and dizzy. Since I am only the partner of the one with the disease, I can only speak for myself, but I know my husband feels the same. It's written all over his face, and in every word he speaks.

My husband struggles with behavioral and social symptoms. He is emotionally abusive, yet he doesn't understand that his behavior is a problem. Walking on eggshells has become my norm. The neurologist recently prescribed an anti-psychotic drug to help with the agitation and irritation that my husband experiences and it has seemed to help. So much so that my husband has been able to smile and enjoy funny moments with me without the normal tense sarcasm, condescension, snippy rude comments, and in my face put-downs that I am usually met with. It has also helped him to sleep better.

I try to have hope, but today is a bad day. He didn't sleep well last night and it seems to be taking its toll. Today is the grumpy, tense, pouty, aggressive side of bvFTD. Today is the bvFTD speaking. Today the bvFTD says to my husband that nothing is wrong with him, everyone is against him and we all have a problem, not him. Today the bvFTD tells him to be passively aggressive against me. When bvFTD brain is in charge, I can do nothing right. The front of our brains control personality, behavior and language. When these lobes are compromised or shrink, lots of symptoms can be confused as psychiatric problems, but the patient cannot change or control these symptoms, and often cannot even understand that there is a problem.

As I write, I am hoping that it will be as therapeutic for others experiencing dementia, as it is for me. I've looked long and hard for personal stories of this disease and while there are some, there doesn't seem to be a full intimate look at people, families, living with bvFTD. I want others to know what this disease fully looks like for us in all its struggles, good and bad.