For Betty who thought all of us who write are doing so well…

And her husband is not the joyful, hopeful patient as we seem to be.

Dear Betty,

First, we only write on days that our brain and body come together to pull us out of our chairs. And we know if we call our family & caretakers ONE MORE TIME they might want to hurt us – just kidding.

I don’t write when I am suffering from rages that reduce me to a heaving mess on the floor, sobbing.

Ditto, when my voice isn’t working and my brain, now running at a 33.3 lp record range leaves me shaking and I don’t write when my vocabulary is like an Old Salt. When if my dog barks one more time, or the dog who stays with us leads the pack, and I begin to see them simmering on the barbeque.

On the days I have to put myself to bed, and never get out, because my belly is so swollen with anger at no one, nothing. And frightened, because I cannot seem to stop it.

I am frightened of how these outbursts come more often. Of the weakness that seems to cause me to fall and injure myself. I wonder – as I’ve read – if we really do threaten harm to ourselves or others as we get closer to our expiration date.

If you join the FTD Support Forum as caregiver, you will have a better perspective than I do. www.FTDSupportForum.com – they have weekly online chats. An eye-opener is found at http://ftdsupportforum.com/forumdisplay.php?f=62 for both the patient and caregiver. Lots on improper behaviour, and socially embarrassing things. Might make you feel better.

We are a shuffling lot of lucky patients who still can communicate via Internet.

We are a shuffling lot of lucky patients who still can communicate via Internet.

So now that you see my yucky days, and that I am not wise or praising anyone, and get discouraged -and worse take it out on the people I love most – maybe you can read our posts on Howard Glick’s “FTD/Dementia Patient Support” page on Facebook.

Keeping you in my prayers – all of us in our prayers.

Blessings & love, Vicki

PS ‘Honey we are a mess’ is the best I can say about we FTDers.

Permanent link to this article: https://soncountry.net/voice/2012/05/for-betty-who-thought-all-of-us-who-write-are-doing-so-well/

2 comments

    • Judy Ferguson on May 18, 2012 at 3:44 pm
    • Reply

    Thank you so much for sharing and educating those of us who know nothing about FTD and how it affects those who have it. You are in my prayers every day and much loved. So glad we had a visit and shared a “Timmy’s” when I was on my way home from Cincinnati! Love and prayers and blessings!

  1. Well wouldn’t be here today – literally – without your prayers and Timmy’s! Sometimes a donut can take us farther than a prayer, I believe. And, they are ‘holey” are they not.

    I hate this disease, Judy, not for me but for those who are 30 and dying, have young children, and are left vulnerable to the damages of a brain committed to dying, for no apparent reason. If my single death could save even 1 other I would walk proudly into the light.

    I love & bless you. VWB

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