What It's Like Losing My Mind

I wanted to share this with you... an inside look at FTD. It was posted on the FTD support forum that I am a member of. I asked Tracy for her permission to share it with Cathy's family & friends... and she was honored to be of any help. She is an Amazing Woman & Wonderful Mom. She is 43 and has FTD. Here is her note:

~What It's Like Losing My Mind~

As I now find myself in the middle stages of FTD or whatever type of dementia this is, I find myself losing my mind on a daily basis, sometimes only hours at a time. What is it like for this to happen to a person that use to be extremely independent, organized, active, extremely on top of and ahead of everything in her life? It is shear frustration. Frustration that I say things and within just minutes later, I have no clue what I said and am so determined that I was right and stand my ground. I find that everyone is in agreeance that I was wrong after all. Does it really matter that I was wrong? In some cases it is of utmost importance and in some cases it really doesn't matter. I find myself becoming more compulsive I think would be the term. I have a check list of things that I do daily and I find myself checking it four, five, six times a day, maybe more! I find myself taking a break in the middle of chores and sitting down to take a break and taking a nap, sometimes a 2-3 hour nap at a time. I wake up and its time for my son to come home from school, so I scramble around to make it look like I accomplished my goals for the day as I don't want him to know my shortcomings as they appear to be coming faster lately.

People wonder if I am progressing how can I sit and write this stuff as I am writing to you? Sometimes it takes hours, even days and thank God for spell check. If I mess up at this point I really don't care as I know you all will understand. It is very disturbing to say the least knowing that all of this is happening before your very ears and eyes. What can I do to fix it? Sometimes I feel like there is a hidden camera and someone will pop out and say this was just a joke, only there is no end to this joke. If I say things wrong or don't remember what I said, I really don't what to be told I made a mistake or spoke out of turn, what difference will it make? I won't remember anyway. Why tell me what we talked about earlier in the day? Why ask me about our plans? Just go ahead and I may ask questions but I will follow and whatever happens, happens.

I may ramble but at least I am still communicating so please don't shut me out. Don't quit talking to me because I don't remember or I forget. I still need to hear your voice and feel your touch as my senses are still intact. Though I may appear to be lost at times or confused for a brief moment, give me time and I will come back at least for now. Losing my mind is a complete nightmare, one that I never wake up from. A nightmare that haunts my loved ones with pain having to watch me forget pieces of my life day by day. I have been told by many that I am their hero on this journey of dementia but I am no hero, I am just a person losing my mind one day at a time trying to hold on until I no longer remember what was and what is. A person wondering when I will wake up in another world much deeper than the hole I have been sinking in the last couple of years. It is then that I will have lost my mind.

Tracy

Tracy (Younghope)
FTD, 43 years old
Young Hope The Broken Road

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Note from Jean today:

Hi Beth and Family:
I have been gone for 6 days from seeing
Cathy, (out of town) and I do believe she knew it.. I spent
two full hours there and still had a hard time
leaving, every time I would get ready to leave,
she would close her door or go get the journal
that we write in, just to detain me I'm sure....
We also went down to dining room for music
which she seems to enjoy, the staff and I put
on a show today, we did the chicken dance for
the residents!!!! there was no video taping
allowed....Cathy laughed so hard, not sure if
that's good or bad....Very vocal again, and on
the move....Tomorrow I will go with Gayle and
Cathy to her doctors appt. in LaCrosse, anxious to see what happens there???????
Will write more when we get home tomorrow.
Say Hi to all.......Love Jean