Alan? I'd like to beg you to please share some time with the caregivers side. I truly miss your perspective. And what do you mean you're 'retired'?
This message is really for all those who suffer from this dreadful disease. If it's not too painful to read, we could all certainly use your perspective. Sometimes we need a hammer to the head, but we're trying...
I hope you'll all consider along with Lisa and Ttom to come visit us from time to time.
Thanks -

Hi Beth!! Thank you so much for your kind words.

I've had an exceptionally good visit with the Caregivers, when I asked about out of home placement ideas.

I'm Retired because my dementia has progressed over the last year, especially into the unruly, angry stuff that happens when I get brain fatigue. Commonly known as "sundowning." I'm a pretty cool guy right this second, but my rageful stuff has been coming out more.

Historically, I've had enough self-awareness to not be too horribly inappropriate. Alas, I'm less self aware nowadays. More and more, there are times when my rage just runs with the wolves & doesn't even know it.

Which is a long way of saying, I'm not appropriate to be a Peer Volunteer, due to my late night instability.

I'm still around, I'm just going to post less most days, and try to avoid letting my inner monster get loose.

Thanks for responding Alan. I can certainly understand you've reached a new phase in your life and I'm sorry. Sorry for you and for us. It certainly sounds like you're adjusting.
I wonder if you're the journaling type.
I trust you have a good neurologist to help with the Sundowning.
Take care -

Alan,

I am sorry your monster continues to grow. Please, check out other meds!

You're still my hero!

More meds, more side effects, usually. There's been at least one drug that made me quite psychotic and angrily paranoid, which has me spooked to this day. I can't stand the thought of being that crazy and dangerous again.

I actually am doing great with Seroquel. My bad times are too strong for it to completely quiet, and I'm reluctant to tranquilize myself even more. Truly, a lot of it is how I'm responded to. A light and breezy response and subject change is ideal, but I gather I'm pretty hard to respond to that way, when sundowned.

Beth, I've often been the journaling type, and it's still useful. I'm tending to express myself on these forums, and with friends and family and doctors, so there isn't as much left for journaling.

quote:

Originally posted by Alan in Colorado:


I'm Retired because my dementia has progressed over the last year, .......

....Which is a long way of saying, I'm not appropriate to be a Peer Volunteer, due to my late night instability.

I'm still around, I'm just going to post less most days, and try to avoid letting my inner monster get loose.

Hello again Alan,

I congratulate you on the awareness of your current self. (If that makes sense.) I think this is a great example of why this EOAD is so frustrating to us all.

Seems many/most of us were professional working individuals before diagnosis. With backgrounds of high levels of job responsibilities we have been the "Person in Control". We were crumbling bit by bit not knowing or understanding what was happening to us. It was devastating to us, this loss of control.

Once diagnosed, we finally had something to wrap our arms around and "try" to control. Of course there is no control of AD and it silently marches on destroying our minds and dignity.

We have less and less control, but we desperately try and maintain "normal" as much as possible. Medications, Mind Games, Outside & Continuing Activities that give a purpose and sorta "normal" schedule to our life.

Since "normal" has been taken away we have to try and re-create some kind of new "normal". Normal being something acceptable to the others in the outside world of course.

I truly feel we must not/can not succumb when diagnosed. We must strive to continue to count and participate in our life as the wonderful knowledgeable individuals we are.

Our friends & family want us to continue on. Outside interests, like these boards, keep us with a purpose and keep us THINKING -THINKING - THINKING. Helping ourselves and helping others.

I will come and go on the boards, as my personal need arises. Thank you Alan for also continuing in the capacity that you feel comfortable.

Lynn

Hi Everyone

Alan, I'm soo sorry to hear how this "monster" has tried to control you...I hope with all my being that you and your wife will be able to walk thru this next level with a light heart.

We all still look forward to your postings. NEVER STOP! Your words can be inspirational to the degree of making a person look at "areas" in another perspective. Thank you....
M