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 howardjglick@gmail.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.
Howard
Wow Howard, that really is too bad that you received such a horrible letter. Some people just can't imagine what it's like to have FTD, maybe she should walk in a victim of FTDs' shoes so she could better understand the disease, obviously she's just not getting it.
ReplyDeleteHoward,
ReplyDeleteI'm sorry this is a late response to this blog. I meant to respond to this posting before, but then forgot about it until I was going through your blog again today. I am so sorry that you had a blog reader write you such a cruel and nasty note. Don't let someone like this get bring you down at all. You are a strong and incredible individual who is very inspiring to others and I want you to remember this! We are all here for you Howard and will continue to cheer you on. You do a fantastic job and it's obvious to the world since you were voted one of the top bloggers! So you continue to keep your chin up high and blogging away. We all look forward to reading them.
Take care,
Kathy in MD