Friday, October 26, 2012

FTD: The Comforting Funeral Director

Went to my first long term facility yesterday with a small band from Riverstone.  It was in a modern building off Central Park in Manhattan. It was only 12 years old and in beautiful. We were introduced to the director of admissions who was professionally dressed and attractive. She stood with tall with perfect posture and had the comforting look of a funeral director. She was pleasant, but her expression didn't change once throughout the 30 minute tour. Within a minute my stomach was churning noticing everyone was 20-30 years older than me and this chapter in my life might be coming up quickly. I quickly found out that this wouldn't work for me. I didn't qualify on the 65 age minimum, me being a mere 54. Nor were they set up for people with Dementia, never mind FTD. The dinning room was on an upper floor and had sweeping views of Central Park. Of course one of the Memory Club members asked if we could stay for lunch. The funeral director stared down at him and didn't even answer. Just gave him look with that pleasant icy stare. I could tell she was measuring my friend up for a casket.

As we wandered the hallways I started to notice something that was a bit unsettling. There were many elderly people scattered around and all of them sitting by themselves not doing anything. They weren't talking to anybody or reading, just sitting there. None looked sad nor had that dementia stare. Next month we're going to a nursing home. Nursing homes are usually where those with FTD wind up. That should be a real treat.

I received a beautiful invitation from someone in Arizona to look at there facilities. (will put in her name and organization soon within a day)  I've always loved Arizona and There educating facilities about FTD. This is crucial because FTD comes at a younger age with all sorts of behavioral issues. Quite often FTD patients wind up drugged up till they become docile. I won't talk about mistreatment, but its crucial that FTD patients have someone visit and check up on them to make sure about meds etc. I know no one in Arizona and still have good friends in NY. Plus a good friend of mine Stephen Athineous will be watching over me. No one could have a better person to look after you. God help any staff member not treating me right. Plus he'll be able to take the kids for, "dress up Howard day." Of course my friends have put together a list of people they'll dress me up as. Dorothy from the Wizard of Oz, Nixon etc. You get the picture.

On the way home my mind drifted to the Netherlands, Oregon and Switzerland. They have legal euthanasia or assisted death in those places. With FTD the end is quicker than Alzheimers, but not pleasant by any stretch of the imagination. I'll spare you the details. When I can no longer care for myself and my bodily functions stop working, I wish I could be taken to a nice quick transition facility rather a place to rot.

Received a letter last night from someone else I know with FTD asking me why I'm looking now because it's so depressing and I'm in such good shape. Yes, it is depressing and the last thing in the world I want to do is for end of life care. I do need to be responsible and take care of this planning now or it will fall on the shoulders of my friends. That simply isn't fair. FTD is one of those diseases that progresses very quickly. Though I'm hoping to be typing away here at McBucks in 20 years, there's a good chance I will need long term care within a few years, if that long. That's the nature of FTD. The average is 2-10 years, average around 5 years till death. Thought some have made it to 17 years.

I don't look forward to my demise and in the words my fellow FTD'er Julie Krueger, "I'll take 20!" after reading the pamphlet that gave FTD'er  2-5 years. "That diagnosis was a catalyst telling me to live my life to the fullest."

I'm living my life, but unfortunately getting screwed by Unum with them not paying my disability and me being alone has made everything in life so difficult. Long term is disability insurance is crucial  and is highly recommended because anyone can get stabbed in the back by a disease like FTD at anytime. I just recommend you use any insurance carrier besides sleazy Unum. 

I want to do as much and accomplish as much as I can in this life. It's not going to be easy, but I've got some good people around me to help me figure it out. Attitude and mindset are everything. I'm alone with FTD and my resolve to fight on and enjoy life continues. Yes, I have rough moments. Losing your mind slowly is no fun thing, visiting long term care facilities isn't easy. My soul is filling with the thoughts and actions of so many beautiful people who have come out of nowhere to help me piece together my life which has become fragmented. 

Jimi Hendrix is playing, "All along the Watchtower" in my headphones and I'm on my way to Columbia for a Stress Echo-Cardiograph.

Rock on baby, Rock on.



  1. Howard,
    It's good you are checking out a facility. Shocking to see how much the cost is along with the age of the residents. Which you do not fit the mold. I am happy you have people helping you along the way - unexpected at times. Jump and the net will appear. Stay strong and thanks for your updates. Your life isn't easy but you live it best you can. Proud of you:O)

    1. Hi A,
      "Jump and the net will appear."
      Your right and it's scary.


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