I have a sense – and I hope I am wrong – that there are more sunsets than sun rises coming my way.

I might be very wrong, and I hope I am.

The last two weeks have been difficult to speak. No, very difficult. Climbing my daughter’s steps was impossible and I sat 1/2 way up, and still could not make my breath and my body coordinate to get me up the stairs.

And I got into her new apartment, and as we went thru the tour to the boy’s room, I said I had to lie down for awhile. And rudely, I collapsed on Sammy’s bed, Bep bringing me a cover, and fell asleep.

Trying to speak today, I was without words. Beanni’s trainer came and she took it over, bless her heart, because I could not speak. At least what seemed to be English…

My daughter came shortly after, and I still could not put words into my mouth. Just garbling and jabbering and… weeping.

And a phone call, that I was comfortable with, and I had to leave. Because I could not speak.

Papa? is this the beginning of my end? It’s ok if it is, I’d just like to know because my kids have a garage to dissemble.

I have this sense – may I be wrong – that my end days are close. I cannot tell you why, it’s just a feeling in my fingers.

Pap, Josh and Sofia – are we ready? I love you all, V

It is now – what? 8-9 years ago? I cannot remember. I lived in the perfect house blocks away from a job I loved, but would challenge me to the max.

My best friend, Carol, and her grandson, were coming to pick me up for his little league playoffs. I was so excited to go. This move to Florida was to accomplish many things. 1) To move where I could retire and not invade my children 2) to heal from being a workaholic and 3) to finally create a life for myself outside of working, proving, and (sadly) working harder. To not worry my children will have to care for me. And it was supposed to be a good time coming – and much deserved – in this diocese.

I heard the doorbell. Suddenly I broke out in sweat, pouring into my eyes. My heart wanted to jump thru my throat. And I was cemented to the doorway of my bedroom, purse in hand.

Knocking. I went into the bathroom and thought they would think I had forgotten.

Voices, knocking on patio door, windows … Frightened, I hid under my bed, thinking I was going to be hurt if I came out. Dripping with perspiration, wanting to break free and just go to a damned kids ballgame, yet not able to breathe.

When did going to a Little League Game scare me so much that I stayed 2 hours under my bed, soaked in sweat, sobbing?

I heard them leave in their car. And I sobbed more. ‘Papa,’ I breathed, ‘something is wrong with me. Oh, God, help me! What is wrong??’

What was wrong was that the symptoms of my decaying mind were becoming pronounced. And while in St. Pete’s no doctor, nor psychologist nor psychiatrist could tell me anything but that I was over-worked, exhausted, needed socialization.

But what no one could tell me was – these symptoms that had continued to build up over the years, and the story they would tell – unlike symptoms as we know them – was: “It’s too late.” When neurological symptoms show it is telling us what irreversible damage has already happened. Parkinson, MS, ALS, Alsheimers and mine, Frontotemporal Dementia (FTD) or Pick’s or Lewy Body. There is no contrition you can make, no change of lifestyle that will change the path you are on.

Symptoms only tell you how far you have declined with no hope of reversal. No treatment. No cure.

And so, today, I fight with treacherous dreams that wake me up but don’t let me separate reality from fiction. Like tonight. Where, fighting as hard as I could, I could not break free. Standing, still in the web, I heard myself struggling to speak. It was like I’d had a stroke. I knew I was awake, since I was standing up and motioning to Beanni, my pup. But the words struck him odd as well. He didn’t respond but backed away.

And I smacked the air and prayed “God, please PLEASE let me out!” Soon the guttural grunts moved to words. When I recognized words, I kept speaking. Speaking to my dog and to myself, until I was fully awake and in the present. I could taste, smell, touch and speak.

Shaken, I walked downstairs to get some water and use facilities. But I’ve been at this keyboard since 3:40a. It’s now 7:06a and I can just now take a deep breath.

My brain is dying. And if the only harm I do occurs in dreams, I will be grateful. However… I am changing. And I am frightened.

Papa, just hold me. And don’t stop until I come home.

It’s me, Vicki – or, what is left of her.

Please pray for those of us with mental illnesses or dying from dementia. Look beyond our clouded eyes and distorted bodies and faces and try to remember what we were in our best of days. Please?

I remember when she was 20 and so excited to get her degree and a tiny apartment.

As I moved thru the years, she especially loved my Ridgeway house (800 sf) and how she mourned not having something like that. How I was so lucky. But once my son came home, the 1 bedroom with the Michigan cellar was soon to small. I found an amazing condo, but she referred to the little house on Ridgeway often.

Today she finally made the move to an apartment that encloses her and her dreams. And accommodates the 2 single sons that she still cares for.

Today is her day, 22 years later. The dream she had. The life she had promised to, and broke.

Her empty nest will give her some pains, as I recall. But I see that her life has taken her back to 21 with goals and dreams that she voluntarily set aside because her amazing sense of commitment. And the marriage that would follow and give her 3 fine sons.

Beth, this time is for you. Roll in it like Jack in the lawn. Your dreams, some fulfilled and some suppressed, are coming true. I am proud of your patience.

And how, somehow, you fit me in thru your marriage, divorce and seeing 3 gentlemen into universities and now an engagement.

THIS TIME IS FOR YOU, Bep! You have waited a long, long time. And embrace your new home.

And while I am like a ‘bobber’ in the river, I will do all I can to befriend you and not take life away from you.

I am proud of you, 21 year old Bep. Stepping out on your own.

All my love … and Papa, keep her under your wing, even as she begins to take flight. She’s good stuff!!

<3 Papa & Beppy & Jack Frost. Madre/Vicki

Somewhere in a drizzly February I forgot how to jump. It was one of those rainy half-snow days, my son was here to take me to my endless doctor appointments. “Mom,” he pleaded. “You KNOW how to get in my van!” I did know. But it looked differently. The handle to hang onto I thought was in the front, then I fumbled on the side. 3 steps? I thought there were two. I lift my foot on the first step and find myself facing – what would be – the ass-end of the horse. I place my second foot and I’m facing forward. Third foot positions me backwards, facing the 2nd seats. I see my son’s face, incredulous, thinking I must be joking. And so I shift my beginning steps into the truck, holding the handle over the door, pushing off with my cane. Once my body is in motion, I try to find a way to shove myself into the seat, skipping the other 2 steps, hanging on to the handle for dear life and punching the ground with my cane to give me an edge, the edge I need to get me into the seat.

“Mom!?” was his reply.

A few months before I asked if he would go with me into our Meijer’s Thrifty Acres (a mega store). “I need a phone,” I said. “Mom, you used to buy all our equipment for our department, why do you need ME to help you buy a stupid PHONE??!!” I wept. I don’t know, I said. But I do. “Why can’t you do these things for yourself?!” “I don’t know!,” I sobbed. “But I can’t.” I just can’t. I still cannot.

We bought the phone system. He brought me home. Installed it. And we parted, both as puzzled as we could be by my actions.

I still try to jump. I tell myself, I will myself to jump. To hop. To skip. Regardless of the command my brain just says, “What?”. I can’t lift both feet at the same time. I can’t will my feet to alternate, or play hop scotch. Or jump rope.

They say when a part of your brain dies, it is compensated for. Not so far. Not so far.

Papa, it’s just me. Vicki. Where am I going?