FTD and Routine Maintenance

Wrote a blog yesterday and went home totally exhausted. It was the first time I've written in a month and I never realized how much it took out of me. Besides falling asleep in the afternoon for a few hours, I also fell asleep at 8:30pm last night. When you have less of a brain, it's exhausting using the remaining cells left up there.

Today is the second day in a row up I'm up and out of the house. Seems like my routine went to hell. The last month found me leaving my apartment briefly each day just to get a quick cup of take out coffee before heading home. Of course there were exceptions, but they were few and far between.

Guess what, time to put all the crap aside and give myself a big kick in the ass and get myself together. I have the self determination and the discipline, but it is so hard to make it happen. Getting anything done is like a major feat for those with FTD. FTD steals our motivation and planning cable. Just arrived at Cafe Buunni and realized that I didn't have breakfast again. In fact, I haven't had breakfast in over a month. It used to be just cheerios every morning and then I went over to the Atkins diet. My cardiologist had me switch back but I still haven't been able to my morning routine back together. Last week I threw out milk that went bad because it wasn't used in my Cheerios. I'm supposed to put in my monthly order for heart medicines tomorrow, but noticed this morning I have about a three week supply. I guess breakfast isn't the only thing I'm forgetting. I usually have my pills after breakfast, but since I've been missing breakfast, the morning routines surrounding it are also suffering.

It's a domino effect. So how did my routines get shot to hell? I'm not really sure. I did have it traced back and explained it to someone the other day, but it eludes me now. I know I've been sleeping better and that extra hour of sleep threw off my timing and delayed my shower, my tv news routine etc. I normally would leave the house by 6:30am. If I didn't leave the house by 7am, there was a good chance I wouldn't leave the house at all that day. It also makes it hard facing the day knowing that I continue to be aware that I'm unaware of what I'm saying and doing often. The other day when I was out getting coffee a jogger went by wearing a black spandex suit. As she passed me I turned and said, "nice ass".  A day or so later I realized that, that was a bit inappropriate. Though no harm was done, incidents in public are common and they weigh me down. I bring this up because when you know your off it makes it much harder to get out the door of my apartment. I'm off and I know it. When I'm by myself my behavior is worse in public. When I'm with others, which is becoming very rare I'm more in control. Why? Sorry, no time to think it through right now.

Now that I'm working on getting myself and my routine back together, my new arrival time at Cafe Buuni is 7:30am. I've made it there three days in a row now. I just need to get my pill taking, breakfast and all my other things back together.

This is some way to live your life. I want to thank everyone who has written to me and researched Nursing Homes and Long Term Care in the NYC area. Your love and care is invaluable. I believe and am hoping the nursing home we visited was just a bad one and poor research done by the organizer of the trip. Hey, everyone makes mistakes. If this was a good one, bring on euthanasia :-) I've been to two LTC facilities now and at both I was asked if I was checking for my parents. Neither heard of FTD. I explained at both that I have FTD  and statistic wise, this could be my home within a few months to a few years. I need to be responsible and have things organized. This is taking a toll on me visiting these facilities. "Memory Club" will be making these trips once a month and I just don't have the stomach to go by myself.

I'm 55, if you don't think this is rough, think again. I started showing symptoms and getting sick because of FTD 8-9 years ago. Like everyone else with FTD, I don't feel there's anything wrong with me. I need to think about myself, life and actions to realize how my mind is off and deteriorating. Most who are around me short term also have no idea I'm sick. Most who think they get it, don't. 

Well, time to publish and get home and wait for my GLWD God's Love We Deliver meal delivery. I deeply appreciate there charity service. It's a lifesaver not having to make a decision about what to eat and just throwing one of the aluminum containers in the toaster oven. Still, there only so much spices can do to help these along.

There's a lot to look forward to. I've got to get help planning out what, where and when I need to move. I'll get through it.

I've a lot of good things coming up and plan to schedule many more with conference's etc. FTD, big deal. Still have plenty of life to live.

Howard