By the ‘Goode Grace of God’ I’ve had almost 6 good days. Many of you know what I mean if you have FTD. Here’s what my prior good days before the symptoms looked like:

• got new accounts, and we celebrated
• rekindled relationships with customers
• did a presentation that brought Catholics back
• taught great people to use technology for ministry and how to respect the intimacy that technology portends
• wrote dozens of marketing plans – or –
• wrote dozens of evangelization ideas
• wrote about the Dignity of Life
• defended the Catholic faith

The few good days I’ve had now are:

• didn’t have to take a nap
• participated in a forum chat on Tues & Fri
• bright when I look at my electric cart
• can plow farms and cook on Cafe World, Facebook
• can make a sandwich
• clean the toilet

Notice a slight change. I did too. In July it will be my 1 year anniversary of my diagnosis of Frontal Temporal Dementia, FTD. Put your hands like you wanted to cover your temples and ears. Then put your hands on the top of your head. Now, picture those spaces deteriorating for no apparent reason.

Recall that from the date of your diagnosis (DX) you have from then to 3 years when your cognizant life ends. But your body – your shell – might continue for years… What do you feel? What would you do in a deformed body, in a mind and behaviour that was never you, being fed by hand or a tube, with your family – loving you, but each time they visit, your mind knows them, but you cannot speak or indicate you know who they are … and then your world closes up and you refuse to open your eyes. You need to feel safe and they suddenly frighten you.

And you can hear your family ask how you’ve been. The nurse, overworked, underpaid but kind, gives them some positive feedback. “She’s doing good today. I think she knew who I was. She ate a little custard, spit out the broccoli, but enjoyed the bread. And when I told her you all were coming, I think she perked up a little.” Which we all know is a lie, but I can’t tell you that. I blink repeatedly. One of you says “does she blink often like that?” and the nurse says “yes, but it’s just a reflex when her eyes are dry. Doesn’t mean anything. But I told you that when I read your letters, I think she knew it was from you.”

Liar, she didn’t read anything from you to me. I do know you, always will, but with no speech and muscles who quiver or tremble all by themselves, you don’t know. And so you listen to her … Your gut is trying to tell you something, but you defer to her. “I work with Alzheimer’s patients all the time. Their movement or signs of recognition are just a reflex. There is nothing there that was once your mother.”

And I watch the 3 of you begin to weep, she hugs you. You kiss my cheek and tell me you love me. Then, hugging one another, whispering, you walk out together. And I pray to God, to take all of me and let me out of this FTD prison. I close my eyes, and a tear slides down my cheek. The nurse pats my shoulder, wipes the tears and says reassuringly, “Vicki. Your children were here and they love you. Now close your eyes and rest. Later I will take you down to Bingo.” And another tear rolls down my cheek.

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Papa? Where are you? It’s me, Vicki (blinking hard)

I posted # 20 as my Face Book status and got my children in an uproar, I promise not to do that again. But here, if #20 were real, I would post it, so when you have an accident, you’ll know you weren’t the first, nor will you be the last, ok?

After years of dieting, thinking about exercising and Richard Simmons you’d think life would end better than this. I’m hoping to find something slinky to wear, like Jobba the Hut.You know you are a senior citizen when ……

01. Kidnappers are not very interested in you.

02. In a hostage situation you are likely to be released first.

03. No one expects you to run–anywhere.

04. People call at 8 pm and ask, did I wake you?

05. People no longer view you as a hypochondriac .

06. There is nothing left to learn the hard way.

07. Things you buy now won’t wear out.

08. You can eat supper at 4 pm.

09. You can live without sex but not your glasses.

10. You get into heated arguments about pension plans.

11. You no longer think of speed limits as a challenge.

12. You quit trying to hold your stomach in no matter who walks into the room.

13. You sing along with elevator music.

14. Your eyes won’t get much worse.

15 . Your investment in health insurance is finally beginning to pay off.

16. Your joints are more accurate meteorologists than the national weather service.

17. Your secrets are safe with your friends because they can’t remember them either.

18. Your supply of brain cells is finally down to manageable size.

19. You can’t remember who sent you this list.

20. You have a note by your pill box to never, under any circumstances, take a sleeping pill and a laxative on the same night. <-- there's the truth!!

21. You remember where you put the car keys, but not why you wanted them in the first place.

22. You have your grandchildren test bite the steak. If their teeth stay in, it’s safe to eat.

26. Homemade only refers to your conception, not remotely related to cooking.

26. You find yourself misnumbering lists.

26. You shed unused vocabulary and for that matter how to print.

29. You still have vanity, only it’s a table with mirror.

B. You love making lists of everything.. I think I already listed that.

C. The daily lotto is what you pull and eat out of your fridge.

44. You answer the door with your corset on the outside and bananas in your hair and no one notices.

45. When you flash a little leg, little children want to know where you got your kewl socks.

50. When you buy a new ‘all occasion outfit’ you make sure to pin on it “for funeral”.

50. You read “b o w l s” and you say bowels.

What really makes me feel old is trying to find the organization “Gray Panthers” only to find out they have already died.

Laughter is what gets me thru the day, laughing at myself lifts the burden of the embaressment. Unfortunately, this is all done at the expense of family.

NOTE: children and grandchildren *were* harmed in the typing of this article. ;o)

Papa, you still there? It’s me. Vicki

PS Add your own in the comments …

Parents driving, especially the privileged few with dementia, seem to scare others. But I'm ok with it. I just drive until the spool of rope runs out and turn around.

Ok, so I have Fuch's and Pick's so that would be and ain't that the truth!! You can breathe now children.

Have some more you’d like to add? Please do so, thru the comments.

I had one response: “The last time I felt fire in my loins was when my cordoroys caught fire while walking the dog.”

Love to you all, and prayers. Vicki

And maybe somehow, if we make fun of our FTD moments, they won’t be so bad…?

Hunkering down behind the Mock Orange bush, almost overcome by the heady scent of the blossoms, laying flat like dad taught me, I hold my breath. All that can be heard in the still evening air are crickets and some lazy birdsong. About 30 yards away is “Fury”, the ugliest Schwinn ever made, my trusty steed. “Allee Allee Otts in free!” yells a 5th grade voice.

She wasn't much to look at. When I was surprised with her, I tried to hide my true feelings. Black, basic, a basket. But, my parents gave me as much as they could. It was their best and I'd never show disappointment. So I baptised her (yes, Catholic church), "Fury" and she did good by me for 20 years. Much dented, much loved and never - not even once - told the many secrets I breathed into her, screeching rubber. Went thru 3 back tires. Kewl.

BANG! I’m up in a heart beat, hop on Fury and peal rubber down Turner “never-ride-there” Street, drop again, roll, shove up running with heart in throat, touch the Free tree! Whoop’s surround the twilight air. “whoop whoop” I yell back! Sweat running down my red-hot face. FREE! I made it. Nobody found me or even guessed. Sliding down on Mrs. K’s day lillies at the bottom of the tree, I am one satisfied, frizzy-haired 3rd going into 4th grader. Not bad. Not bad at all. Beat out all the Kennedy’s 8 school age kids, actually really only 7 cuz Lizzie had to babysit the twins. But still, darned good for the last game before bedtime.

Sweaty, itchy from mosquitoes, I grabbed Fury, and quickly got off Turner onto Bennet Road, and swung into our driveway. Great big old solid house, with an oak front porch that alternated being our club headquarters “no girls allowed”, or my Betty Crocker kitchen. I don’t think it was ever a porch, come to think of it. Put Fury in her paddock, headed for the back door and up the 4 steps to the kitchen, saying “Jinx” as I avoided the damp basement 8 steps down.

Mom hollers the tub is ready, and I head up the stairs, 2 at a time, becoming a mermaid for about 15 minutes, then holding an underwater cowboy and Indians scenario. Jammas on, run down for a plate of warm, homemade oatmeal raisin cookies and an icy cold glass of milk served in a frosty red-brushed aluminum glass. “You can take it in the living room,” Mom says. Quick as can be, I scootch next to Dad, he puts his arm around me, and we watch boxing from Madison Square Garden. I munch contendly on the snack, alternating taking in deep whiffs of his Old Spice aftershave and cozying up next to him, his big arm wrapped around me. Only 2 more weeks of school. Life is good. Even when Dad reaches over and eats my last cookie and finishes off my milk.

It’s been awhile since then, but May twilights still hold mystery and intrigue, the new sounds of grass rustling, leaves popping out, dark black loam losing the fight to new seedlings who break through the barrier. I remember sitting on a downed telephone pole that marked the boundary to our acre of garden with my mom, in her rolled up jeans, plaid blouse – short sleeves rolled up onto her upper arms, hair in pincurls, smoking a cigarette. I’d plop down, she’d give the the ‘shhhh’ sign which meant the corn was going to show. Before there was time lapse photography there was Bev & I on the pole, and suddenly you could hear the corn open, and the plant would poke out. We never got tired of that enterprise, ever.

Today, Papa, the ‘pops’ are all in my memory, my own small garden overrun with weeds. But as one of your Catholic children, the drama and the rituals all are recalled, even with my diminishing brain. And the reality of the occasion comes back in a flash. It’s a good day, Papa. A good day. I’ll watch for you as the sun goes to bed. And you know what? I think you gave me a good choice. I’ll have my memories until the day I die, and the rest will pass away. Fury, stay at the ready.

Papa? It’s me, Vicki.

See her legs, intertwined 2x? She was 90 lbs of fun and fury. On the telephone pole she could interwine them the same way. She did it on her wedding day, forgot she had at the vows, and would've fell if Dad hadn't grabbed. That was Bevvy. Somewhere, in a garage full of 'stuff' or a flood, is a photo that show's her plaid blouse, rolled up jeans - a renagade - long legs and a sense that nothing, I mean nothing, would ever take her down. Nope. Especially not smokes. "When my time comes, it comes," she'd say It came when she was 53 from lung and brain cancer. Before she died, having quit cigarettes, she whispered, "I'm sorry. I was wrong." I miss her from the top of my head to the bottom of my soles. Bevvy, just to let you know, "we all are wrong." Love you, looking forward to the next time.

When you are 17, you think life hasn't even begun. Here all I could think of was the bathing suit competing (hated it) and why oil on my body, Senior Prom, graduation, and a scholarship if this beauty queen thing panned out. Any moment, it all changes.