I don’t know, Papa, but sometimes just talking to you is the best I can do, like with BFF. Guess you are one of those to me.

Beanni and I knelt at the window, watching couples putting their yards in. Even for Michigan, the signs are of Spring. Winter kept me confused, not sure where I was, when it was. I even got angry at you, because you know how my loss of date and day of the week cause me so much confusion. At least with snow, I had a clue. For us it would be somewhere between November and May. But when you stopped the snow in January I’ve felt like that silver roller in Pinball, bouncing around not sure where I will land, or if another nickel was to be popped into the machine to send me on yet more searches.

Today was beautiful, as so many of the days you have blessed us with. Beanni and I watch the activity with our noses pressed against the glass of the window, going room to room according to Bean’s priorities. From our 2nd floor world we watched my neighborhood bustle with gardening, grass mowing, and creating beautiful flower beds. The kids were riding bikes, older couples walking by hand-in-hand. And Beanni and I as far away from them as if we were in Europe. He cannot go out cuz he likes to run ‘wild’, and I cannot go out because I cannot go out.

I remember how many great gardens I’ve planted and worked on as a child with my wonderful mom, and through the years as Jim and I moved as he was assigned. I had a dwarf historical apple orchard when we were in Hickory Corners. And cherry trees, and child-size plum trees.

Once I had a lovely English braided herb garden. And the flowers? Best ever, from seed.

Now I look at my beautiful yard and see fresh weeds, barren spots, all the little corners that need tender care. Last year 5 of my 6 rose bushes died, and all of my perennials. It was a period of mourning. Years and years have passed without fresh veggies and berries.

I tried to go out with pup, Beanni, just to pull weeds on the bald spot in my yard… I couldn’t stay. And I came inside to weep, missing what was and wrestling with what is, and is yet to be.

There are times I want to shout “I’m still here!!!” But “I” am ever changing. Am I diminishing? I don’t know. But who I was is gone. Papa, I am so afraid and unaccepting of the changes happening.

But the day is still beautiful, even crouched behind a rippled window. And it still amazes me, even tho’ what I see isn’t mine.

Now, don’t screw up and have it snow, ok??

It’s me, Vicki

Today is a dear friend’s birthday. I am nostalgic thinking of all the events we’ve shared over the last 25 years. How I could I have taken so much for granted? And how can I stop chewing on all that I could do, and figure out what the hell I can do now? (stomping foot)

So many of my friends still support me even tho’ I am silent back to them. They believe in me and know the cards they send are appreciated. But I hate my rudeness, not being able thanks to the stubborn child in my mind, to say “thank you.”

I joined “FTD Patient Forum” on Facebook, and awhile ago joined www.FTDSupportForum.com . So many people tell us, who visit, how delighted they are at how passive -even optimistic- we are. Well, truth be told there are days I am a complete bitch, nothing is right, and I pound the air with a rage I’ve never known.

Bottom line: don’t put my name in for sainthood. Should you be so inclined, talk to my children. And, it’s not going to get better as the ole noggin’ keeps shedding cells.

Papa, WHY couldn’t I lose weight as fast as I shuck off my brain? You may need more advisors, I’m thinking. Don’t ask me today, however. I am in a bad, bad mood. It’s, of course, Vicki. ;o(

I worried about my parents, grands, aunts/uncles and wondered how they were coping with Medicare or Social Security. I remember taking Grandma D to the clinic, asking what the call would cost. She wrote the check, and we were bundling up to head back out into the snow.

While I waited, one of her friends came in with her daughter, asked for their balance, since she’d forgotten her checkbook last time. The answer startled me as much as them. “Your mom has a credit balance of $3,105.00. So you don’t own anything.” What the wha???!! She’d been paying out of her pocket and the clinic was also being paid by SS.

I went back up to cashier and asked if my grandma had a credit balance? Yup, about $3,900. My dad? About the same. Me? $2,000 – Blue Cross/Blue Shield.

Why hadn’t we gotten a statement of over payment? ‘The State of Michigan only required a statement of debt.’ WHAT???? And if they died? Surely it was declared? No. I got Bessie, Dad’s and my credit back after about 6 mos – they said it was better in case a large charge came thru. Poooey.

I promised I would be alert from now on. Took a real estate course, so I wouldn’t be taken advantage of, being a woman and being single.

Worked pretty well until I developed this thing called dementia, or as I call it ‘rotting brain.’ Most recently got conned when I got Medicare and SS Disability. I was told I would receive a new card in the mail from Medicare for Rx, my BC/BS would change, and I’d be getting about $400 more a month, not paying the nearly $600 mo’ly for a full policy.

I did the Snoopy dance when my friend went to get my 1st January refill. $900. By March, this fine unknown card had saved me … uhm, nothing, and I had gone thru over $2000.

Here’s the kick. I am still paying the full Blue Cross. Next Open period?? October, starting period January 2013. Praying for us all.

So, we are still getting schnookered, and poorer. I wrote this because I was pissed, but mostly so no one else assumes private industry and government knows what they are doing, and taking care of us.

If you don’t have an advocate for things like doctor appts, or making insurance or funeral choices, a living will, a dnr and your estate (sorry that I am laughing at that one). Get one.

You can get DNR, Living Wills, etc. for free from the (your state) Catholic Conference – where I did. Hired a lawyer.

It’s hard to see my life more mucked up because of my ignorance.

Next time ask me what happens when you don’t know that you must notifify your car insurance while you cannot drive. My humble insurance pmt has just gone to $900 for 6 mos. No driving now for sure.

Papa, you know it’s Vicki cuz of all the complaints. But please protect all we anawim, we marginalized. Blessings & love to my FTD friends and families.

Christmas is coming … but I am slippin away from all I love. I have lost my freedom of choice to a brain that’s dying. Talking is tuff, but performing an action shows me I have lost “my free will”. Pray for me, and forgive me as I begin to forget you… But those cards you sent 2 years ago are here for me to connect with you again – on a day I am not frightened by my computer.

Blessings, Vicki