"I do feel a lot of empathy for your situation and wish so much that there was something someone can do to make it better or make it go away. However, despite all your hardships, you're such a dynamic person that you seem to try and make the best of a horrible situation."
This was written to me by a nurse who has taken care of me. I responded to her email and now it's turned into this whole article. I have changed her name.
First of all, I do appreciate your honest feelings about my situation. I am a man in touch with my feelings and I have done my fair share of crying. I do not feel sorry for myself and my life though changed is wonderful. The only problem is my situation is misunderstood. Teresa, I choose to live life within the confines of my illness and flourish with it. I will not lie down waiting to die or sit around or sit around feeling sorry for myself. Yes, I am fully disabled, but so what. I am going to get up everyday and make a difference.
With Dementia every day is a new adventure. With Frontotemporal dementia, every moment is a new adventure.
FTD is a behavioral type of dementia, not a memory loss dementia (not till the later stages). I get to act offbeat, strange, make socially and sexually inappropriate comments to strangers and loved ones, realize and remember it usually later at night and cry about my behavior by myself in bed.
I don't have family to drive crazy, only good friends.
The other victims of my FTDness are those that follow my blog and the general public. The following is a typical FTD situation that happens to me all the time. I never know what to expect from myself.
Yesterday, I was with my home health aide Bibi and my son on a crowded NYC Bus in Harlem. I had 5+ people involved in a conversation about Frederick Douglas because someone asked how far away the stop was to Frederick Douglas Blvd. I spoke about what a great spokesman and civil rights leader he was and how far ahead of his time he was for the civil rights era. A woman seated next to me was with her son who turned out to be in Frederick Douglas Jr HS. I prompted him to tell some of the other standing NYC bus crowd a bit about more about Frederick Douglas. After some gentle nudging, he did start talking about how Frederick Douglas worked towards abolishing slavery which of course was the itsy, bitsy, little thing I left out. My home health aide Bibi from Guyana joined in and talked about how she believed Frederick Douglas was going to be on her exam for citizenship. My son from Issaquah, WA looked on with his normal, oh dad look. By the time this little episode was over there were close to 10 people involved. It was a fun, nice FTD moment.
Okay, so FTD doesn't sound so bad right. Wrong! When you say to a young woman on the street, "what are smoking for? Why would you want to lose those beautiful breasts" (from cancer). Try a couple of those on for size. We having fun yet.
I'm 53 and single with FTD. Try dating with this disease. I sometimes make it to a second date, but never a third. I might as well go on a date with a vampire and bring garlic as a gift.
Are all FTD moments like the aforementioned? No. As stated earlier, with FTD every moment can be a new adventure. Other articles I have posted have described in detail what socially inappropriate and sexually inappropriate comments are. So far I have never been cursed out or punched. I have been publicly reprimanded and admonished.
Remember, there is a lot more to FTD than just behavioral issue. You can go to the Association for Frontotemporal Dementia for a broader explanation.
Maxine is someone I know from Starbucks who knows about my blog and my desire to help people with dementia/memory loss problems. Maxine's daughter's tutor is Karen, a disabled opera singer who lives in Washington Heights. Maxine told me how Karen is disabled with memory loss and neurological problems. Karen lives alone, is in her 50's, soft spoken and a sweet wonderful person. She has been sick for years and needs help. I wasn't sure what I could do, but knew I could do something. I spoke with Karen over the phone a couple of times in the last two weeks. I received a call from Samantha (Maxine's daughter) who was at Karen's apt. a couple of days ago and I went over to see if I could help. Karen did not even have a working refrigerator in her apt., nor did she have a clock in her apartment and was talking about constantly being late. Samantha was incredible during our meeting. Not only was she taking notes when either Karen or I were having trouble communicating, (the blind leading the blind) Samantha would keep us both focused. The first thing I did at the meeting was give them a brief history of my dementia and to let them know there might be unintentional cursing and inappropriate remarks, possibly sexual in nature. I gave them some samples so they would not be shocked. They understood this and we spoke for about an hour.
& NY Magazine) is nothing short of a hero for enabling me to start to help Karen. Samantha is an incredible 20 year old treated and just like my daughter Chelsea 17 who has helped people in ways that are beyond words, Samantha gave me a royal butt kicking, (deservingly so) with her heart, mind, mouth, and intelligence for treating her like a kid when I first walked in the door.
I now have the ability to make the difference in peoples lives. I have had over 300+ visitors to this site and I haven't even started to get warmed up on marketing it yet. What this means is I have a forum not only to help those with different types of dementia help themselves, but to increase public awareness about dementia. I am highly motivated for the rest of the time I am capable not only to continue this blog, but to help those with dementia who are alone get help and get my readers to start with random acts of kindness to help those in need, like I have been helped. In other words, it's payback time. Talk is cheap, this is something I have done this week, that I feel good about.
*If anyone knows of an intern or how I can get an intern to help me out a few hours a week, I would be able to not only accomplish quite a bit more, but be able to teach someone easy ways on how to really make a significant impact on someone with Dementia's life and there caregiver if they are lucky enough to have one.