Tuesday, August 7, 2012
Monday Morning with revision*
It's Monday and I've been at Starbucks since 6am. After months of struggling I'm happy to be back into a routine 6-7 days a week. My day consists of Starbucks 6-10 or 11am then home. Last year it was 6-9am so I guess I'm doing better. When I get home from my few hour stint at Starbucks I'm exhausted. I'm usually done till the next day. Could I do more in the evenings and afternoons. I really don't know. When I'm tired and by myself it seems I have a lot less control over myself. I spend most of my time alone and that continues to increase. I do feel safer alone. I do not like incidents with people and I don't like my behavior. I've had incidents with moderators at one support group I visit regularly. I've received many private messages and emails about this. To be honest, I don't know if what I've written is right or wrong. Meaning it might've been offensive to someone. If it was I apologize to those people and the moderators.
My behavior is normally within reasonable bounds for who and what I am now. Who I am now is not who I used to be. I don't like being out of control. My functionalbility has declined and I'm getting worn down. I'm spending more time by myself and find myself getting easily irritated.
Sometimes I go with a friend to Costco or a ride somewhere, but for the most part I really don't do much. The few hours I spend at Starbucks, I try to get my thoughts on paper. I try to articulate what my thoughts are like, where they come from and what life is like living this way.
Yes, I am aware that I'm unaware of what I'm doing and saying much of the time. What this means is I'm not sure what I'm doing is right of wrong. Usually after the fact, it hits me what I said or did either that or someone makes me aware of it. This is not a fun life. I am not a rock star, movie star, celebrity or Siddhartha. I'm just a guy who got sick and is trying to make the most of life while I can. People say I inspire them. The truth is I'm in survival mode. I'm realistically scared of being out on the streets or an institution. People like me don't do well in institutions. We wind up drugged up or put in a secure mental facility. I will not be going this route.
A little history. Why did I start this blog? I started this blog because I didn't know what to do with myself. I only have a few good hours a day which are usually in the morning and a friend suggested I start it. It was a way I could describe what it was like living with FTD/Dementia and help others in the process. Writing also helps me understand what I'm going through. When I started this blog I was scared I would be shortly dead. There's a lot of scary stuff out there on the web. Much fact and fiction. My neurologist banned me from reading anything on FTD. I was consumed with death. A friend of mine with FTD wrote to me last week that I was consumed with FTD. He was right. I eat, breathe, write, film and think FTD. I drive everyone around me crazy. I've successfully isolated myself so I don't have that many friends around me any more. Most are new victims to me.
I receive really nice comments from people all the time. They are deeply appreciated. Last night I received a comment letter that was incredibly vicious and bitter. It was from a Kathy R and had absolutely no merit, credibility or anything constructive in it.. It was based on her pain and anger. I've received letters and comments before questioning if I had FTD and why I'm functioning so well, but never something as nasty as this. It was the first time I deleted a letter. Kathy R if you want me to address your letter, you can send me an email at email@example.com and I'll respond. Otherwise you can start the "anti-Howard Glick blog" or join the "Kill Howard Glick club".
* Please note: I was contacted by a 2nd Kathy R from Maryland who is not a caregiver, she's a patient and in constant contact with me. This is not the Mary R who wrote the comment.
Even though my mind is withering and filled with scary and confused thoughts a good deal of the time I try and keep my mindset positive.
This isn't the life I've chosen and I wouldn't wish it on anyone. But "it is what it is" and I have no choice to go on. What else is there? Suicide. Tried that and learned two things. One thing is that I'm not good at it and the other was I had FTD.