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.
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
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.
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.