Sunday, August 7, 2011

Routines, Children and Day to Day Chaos

Routine is extremely important to someone with dementia. In the last month I've had a lifelong friend from Seattle visit as well as my son visit. Things that break the weekly routine create chaos. I am exhausted a good deal of the time and it is hard to break from my weekly routine. I started to resent any changes that would have me alter what is scheduled. 

Time for mindset to take over. In life, especially in NYC it is extremely difficult or virtually impossible to keep up with a routine. Now I could sit home like a vegetable all day and watch TV and have Bibi cook for me or eat pizza, but I choose not to. I have excepted the fact that I want to and need to be part of the world. For better or for worse I will be out there every day amongst the masses. I will not isolate myself at home because of some FTD or dementia related issues. That would be the easy way out, I have never been one to take the easy road. Of course I want an uncomplicated life, but I do live on planet earth and there is nothing uncomplicated about that. Every day my day starts the same. Get up about
 2:00 am, flutter around the internet, stretch, relax and think till about 5:30am. I arrive at my office between 6:00 - 6:15am 7 days a week. My office is in Starbucks on 181st and Fort Washington Avenue in Manhattan. 

I am usually  back at my apartment by 10:30 am. Many times I'm exhausted and cannot get up till they next day, sometimes by evening I'm okay.

Today my friends texted me that  about 6 of us would have brunch together. My friends are the best support that anyone could possibly have with endless patience with and for me. Many I have known for 40+ years since childhood. I cannot get away with anything from them. They will not treat me any different than they have all there lives and they do know what is best for me most of the time. Brunch would be at 11:30am. In light of my routine I couldn't of course I could not go. I spoke to my friend on the phone and explained that I had my routine and it probably be best not to deviate. My son just left yesterday I needed  to get my self stable. Of course he totally understood and said, " Great, see you at 11:30".

Life goes on. Routines need to be adapted and even if it isn't okay, it will be okay. We had a wonderful brunch at my friend Steve and Sheila's apartment. At about 1:00pm I was near collapse. As usual I got up and said something to the effect of see you later. Went to one of the downstairs bedrooms and rested and rejuvenated till 3:15pm. This is typical of the way I push myself. My friends know it's better for me to break the routine and be with them for my well being. They also know at any given moment I need to lay down in a quiet environment. They are the most loving and caring people in the world.

About 20+ of us, (adults & kids) are going away for 5 days for Labor day weekend. It was brought up today so everyone can start planning. Or course I'm not going to go to that either :) . By the way, I only work on the articles for the blog in the mornings at Starbucks. It's now 8:30pm and I have been typing away. As you see, part of the routine is being able to adapt to breaking the routine.

In my last article I stated with Dementia every day is a new adventure. With Frontotemporal Dementia, every moment is a new adventure. 

People talk to me during the day and guess what, I'm as normal if not more normal than anyone else. To talk to me you would never think there was anything wrong with me. It won't take long though till there will be an FTD moment. 

I know that my decision making process has been compromised and my judgement is usually flawed. Normal everyday common sense decisions that we take for granted are now a guessing game for me. I know the difference between right and wrong, I just never know whether I'm doing the right or wrong thing.

Put that together with a constantly changing memory loss issues and my days get riddled with confusion and disorientation. 

I wanted to take my son Myles to a baseball game last week. I found cheap tickets on Stubhub and just needed to decide which day to take him and whether it would be a day or night game. Since I usually recharge my batteries during the day with frequent rests and combined with the abominable heat of late, I decided to take Myles to an NY Mets evening game.

I decided to book tickets last Tuesday night. 
I crosschecked the evening games during the week against the 5 day forecast. I found Wednesday's forecast to be slight rain, possible thunderstorm and 78 degrees. Friday's forecast was clear and 83 degrees. 
Which game would you choose to get tickets to?
 I chose door number 1. Wednesday's nights game. I knew there was a forecast for for rain and a thunderstorm, but thought it would be cooler than Thursday night when it would be clear. When we got off the train it was raining and never stopped. 

Baseball game got rained out, but we had fun hanging out together. My son and I had a blast hanging out in someone else's dry seats just joking around for an hour and a half before they cancelled the game. There were maybe 100 people in the stadium. We were together and that's what counts. Myles who is 13 kept calling over the, "beer here" guy. I  made a bad decision  in getting tickets for last nights game. Big deal, I was with my son and though the game would have been fun, it was the company that counts. We laughed and screwed around, took some videos, pictures, and ate some expensive baseball junk food. It was a fun father and son time together. Anyone can go to a baseball game and say oh yeah it was a good game, we went to a rainout and made it a fun experience neither of us will soon forget (even with my memory loss, I think). 

Children, FTD and dementia. It's an issue I never even thought about until it was brought up to me this week by Sharon Denny, The program director of The Association of Frontotemporal Degeneration. I didn't even think about it the last last 8 years. 

One of the projects I'm involved in here is addressing the need for more resources for
kids like Myles who are confronting with trying to understand this.   We're
working on the concept for a website for kids/teens, but it's still on the
distant horizon. 

For a global perspective people are living longer and waiting till there older when they start bearing children. This is a recipe for a lot of children needing to deal with parents with all types of dementia. Children will need to be thrust into the role of caregiver and we need to start taking this situation seriously.

In 1776, the United States average life expectancy from birth was 47 years.
In 2011, the United States average life expectancy estimate from birth was 78 years.

In China, life expectancy since 1949 has more than doubled.
In 2011 China, life expectancy estimate from birth is 74 years.
* CIA World Fact book

"Alzheimer's disease and other dementias are the single most significant health and social crisis of the 21st century," said Daisy Acosta, Chair of the Executive Board of Alzheimer's Disease International.

We are facing a worldwide new dementia pandemic looming with Alzheimer's leading the way. Just like the world wide debt crisis, we are facing a global pandemic crisis that will bite us in the ass if we don't start to address it seriously now.

There are many families like mine whose children are not only thrust into the reality of dealing with a parent with FTD, but might have to sacrifice a good portion of there life having to be a caregiver. I have no statistics, but because of a 50% misdiagnosis rate FTD population is definitely higher than anyone realizes. 

I started exhibiting the symptoms of FTD in my mid forties. My children then were about 6 and 10 years old. 

I have had FTD for about 7 years and my children, Myles 13 and Chelsea 17 are used to my cursing and inappropriate behavior. Since I have been doing it for 7 years they probably don't understand it's from an illness and think it's just me.They don't know there father before he was sick. It is extremely important to focus on children since this disease attacks parents with young children.  A website is a wonderful idea. Since kids/teenagers rabidly text, maybe there can be some rapid response text hotline set up. This way at home or outside, they can get immediate aide or comfort for a situation with a parent. FTD incidents happen moment to moment. 

I can't express the pain and horror that young children go through. While I was misdiagnosed for years I would say and do things that made no sense and they would look at me like I was losing my mind, and in essence I was. Today I do things that make no sense and it is only truly understood by a select few in the medical community as well as a few good close friends.

My children have a watched a father who would wander in the rain for hours with them trailing as I tried to find a specific Chinese restaurant. For years they have suffered through seeing me say things indiscriminately to strangers and watched me doped up on bipolar medications that had me mumbling and drooling on myself.  Now they are shocked to see I am in control most of the time, my hair has grown back, I stopped binging on carbs and have lost 25 lbs through exercise and proper nutrition. Yes I constantly have FTD moments all the time, whereas I cannot stop them from happening,  I am able to deal with them as best as I can as they happen.

My children are also effected because I'm wiped out financially. The Illness took me from being very comfortable to bankruptcy. My daughter goes to college next year and I don't have a penny to help out. My son had his Bar Mitzvah during a Saturday service in Seattle in April. Myles is observant and studied very hard for his Bar Mitzvah. To Myles turning thirteen means starting to make the adjustments to becoming a man. My son has humbled me. My son is in the 98th percentile of math in the country. He is smart, funny, and has a heart of gold. There was no Bar Mitzvah party and I did not attend the service. No funds were available. Heartbreaking for me, for Myles he is moving on. 

Please feel free to share you experiences below (in the leave comment area) of children effected by having to grow up with a parent with FTD. Your experiences will help give information to AFTD as well as the Alzheimer's Association about the fast growing problem of children having to grow up dealing with a parent suffering from Dementia. This in turn can help in the development of programs geared at children.

It is imperative not only that we learn of ways to diagnose FTD quicker, but help people get back on their feet like me. This disease is incredibly painful for children and family members. My symptoms are as much under control as they can be at this point. A year ago I was drooling on myself. Now, even though there are many behavioral issues, my children look at me under a different light and I am able to be useful enough to manage this blog and try to help others. 

That is my life now. I absolutely refuse to be denied from being happy, enjoying life, and being productive. I am living life like a millionaire who just happens  to be on $1.45 a day in food stamps.

My son Myles flew back to Seattle yesterday morning. I am missing Myles quite a bit. I was able to take him to the gate since he is a minor. I waited on line with him and gave his ticket to the gate agent when it was his turn to get on the plane. I gave him a hug goodbye. He then kept putting his arm out so I kept giving him more hugs. There was a long line still behind Myles and finally the gate attendant told me he was holding out his arm for me to give him his carry on which I was wearing, Oops. We laughed, I gave him another hug, then his bag and he left. 

I miss my son and my daughter but at least when I am with them now or speak to them on the phone, it is quality time. 

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