No responsibilities, no work hours, no demands – or at least demands as you might see them.

But it is. That horse I cannot make drink, is this abysmal child in my head.

“What would you miss or fear most?” I was asked. I thought it meant losing the ability to speak. I had no idea of how FTD would affect my body: no stability to walk; swallowing, walking, dancing, climb into bed without ending in stuck in a pile of bedding, nearly choking. Speaking of choking – the night cough that can rattle me awake, unsure where I am, looking for a tidy place to expectorate. And the next day, there is no sign of it. But it takes 2 days to get energy to get out of bed.

The child within keeps me from the computer, to speaking on the phone, to get into the tub, to brush my teeth … Same child will prevent me from recognizing that I need to urinate, until, while sobbing, I do, in my now revered Depends.

Shame, frustration have kept me from you. Those ‘sticky’ dreams I’ve had for several years rob my dreams. I hear them calling me, time to move, to pack — and then I cannot find them, not awake nor asleep. My FTD friends, I so wish we has someone to cuddle up with us as say, as they brush my forehead, run their fingers through my hair, to say “It will be all aright.” “We are getting you ready for a place of peace.”

My prayer tonight is for those who only want to die in the arms of those they love. And it will be forever.

Papa, do you hear us?? We are lonely and very afraid. Love, Vicki

My mother had a way with adages, like this one. Her ending would be “… you can’t make her eat.” Well, whether eat or drink, my brain has become that horse.

For the last 6 months, it’s like there’s a Mini-Vicki that has taken control of anything my will wants done. Maxi-me says, ‘Tomorrow I will spend 2 hrs on the computer writing, or doing my games.’ The laptop sits on the coffee table, shut. I attempt to bring it to my lap, until I am soon sobbing. “Why the hell can’t I use my computer?” And there’s no answer.

The computer could be substituted with

• eat breakfast
• take a shower
• get out of bed
• brush teeth
• call kids
• check email
• go to the bathroom…

That’s just a few of the what were everyday no-brainers. Not any more. I look at dishes on the counter that need to be loaded but my anxiety goes thru the roof.

Hygiene – made contact with some others on FTD Support Forum and some called it paralysis or numbing. You know how to do it, you intend to do it, and you just stare. Stare too long and you won’t remember what you were thinking at all. So, hygiene seems to go early on.

Simple, everyday chores now go on a “To Do” and if it isn’t on my list, it doesn’t even get a 2nd look.

I am withdrawing as fast as Mini-Vicki will go. It’s safer, no phones, no email, no visits. No pretending I am just fine – everyone has memory problems today, I am no different. And all of us are dying. Maybe this is true.

Stamina is in short supply. I probably fall with some blood pressure problems 2-3 times a day. So why would I want to go into a store? It doesn’t stop there.

Food is harder to digest. I hear my comrades are having the same problems. It makes me wonder what other overlooked taken-for-granted issue is ignored with the FTD. I understand. We are the worst patients that could ever be. But our crazy list of symptoms still leads us back to a brain that is dying.

Well, that’s enough. We know the horse has the upper hand, just as my 5 lbs Morky does. Now, where do I fit in? Maxi-& Mini-Vicki.

With love and all my prayers,

Vicki

Be grateful that someone knows you might need watering, grooming or feeding. Watch every 'normal' interaction. Write it down. I'm looking for a better Mini-Me - maybe I need a horse??!! ;o)

Her blue eyes seemed even bigger, the blue almost a crystal. Her smile was one of peace and joy. Skin as a baby’s. Hair like a small toddler, feathery, soft. Her hands were clumsy. And as the brain cancer grew more and more we would just sit and look into her eyes. Her beautiful eyes. Like infants seem to have seen everything and look so wise. This woman had been my mother, Bev to her friends. A woman known for her laughter, hard work and just never sitting still. Every few hours we lock eyes and I could see she knew me and to me that means she was aware of how our roles had changed, and her life tragically. She died with us by her side, at home. All day her eyes were saying something to me. Then, she was gone. My child/mother. 53.

My father looked like woodsman and army man should. Until heart and lung disease took over. And now I believe he had FTD, because I am emulating his mannerisms in his later years. His eyes too, became darker, more lashes grew and I knew he was pulling away from this life. Not the father I had known, a joker and teller of tall tales, compassionate, sentimental, generous, and fulfiller of Mom’s task lists that she created for him.

There are times of the year, I feel them most dearly; Christmas, Easter, their birthdays, anniversaries, Thanksgiving, summer visits. Often.

I now hear from you, my friends. We have followed similar paths, reversing our roles in order to care for them. One of the most humbling of acts between children and parents, wife or husband. No more running to them for advice, to share gossip with, or go shopping – the every day pieces of life begin to erode the patient and the caregiver into new patterns.

FTD removes their personality, and just as likely is molding ours. It’s not all peaceful moments for us. All the acceptable social behavior they had displayed thru their lives, begin to erode. Language, inappropriate comments, anger, weeping and what seems like on purpose to bring us to anger and frustration. That’s when we become strangers.

Now my children attempt to provide for me. When they call they don’t know if I am weeping with despair, or just weeping because I so loved them on the phone. I have this new temper threshold of 0 to 60. And in expressing what I want to say, I get frustrated and cannot complete any more conversation.

For all of you who care for your family member on top of all you do, you are specially loved by this community, by your God, even though you may feel alone but know we are with you.

If you are an FTD sufferer, we love you too, on these special occasions, just the way you are.

I know how hard it is for my family, and I know my needs will be even greater. Just keep searching their eyes, they are there. Might even bring out photos that brought you joy when they were active in your life.

Papa, are you there? It’s Vicki Keep us in your arms. Keep us warm & safe.

you can’t make him eat,” my mother would say. Which is true on many levels if you chew on it long enough. Beverly wisdom to live & die for.

With this disease I’m having lots of problems with that darned horse. I either can’t find it, or if I find it I don’t remember why I needed the horse. And I recall mom’s sage advice. No matter what it was I needed the horse for I need to just chill out … maybe the horse will come back. If I had a horse, I mean.

Right now my problem area consists of two things:

1. Short term memory is driving me crazy, errrr …crazier
2. People I love as friends or my family are dying before I do

Dealing with #2

2) I’ve already had fair warning that I’m going to die – most likely – from FTD and its side affects. But these good people were finally getting to the “life is good” phases of their life. My beautiful cousin-in-law was beating the sudden diagnosis of ALS (Lou Gherig’s disease), fighting so strongly, and suddenly everything went wrong. She passed in March; another cousin, Robin, died suddenly, 2 weeks later. He wasn’t even sick. My cousin, Terry, lost the people he drew strength & support from.

Others include a wonderful friend, who missed by minutes dying from the “Widow Maker” heart attack. Recovering from stint/shunt?? slowly. She brings meals and new friends to my heart. Is a comfort to many in this town.

One of my snow angels from next door is needing a quadruple by-pass, on a heart that is producing 25% of what his body needs, kidneys failing, lung & heart filling up with fluid. We had talked about 2 hrs before he drove himself to the doctors. No clue he was 99/100% close to dying, even while just walking. That’s some kind of SA.

A wonderful family that owned “Back in the Day” Cafe – a life’s dream for them all – found out he had stage 4 brain and bone cancer. Within days they had numbered his days to 30. The restaurant empty now.

And here I am. Just sitting on the couch fighting with my horse. He doesn’t seem to be where I thought I left him. (just kidding!)

All my life I’ve been told ‘only the good die young’ so maybe that’s the reason I’m still around, eh? Papa. My friends get a great kick out of that. Lord, help me find what you are waiting for me to do. And don’t let me get too far away from you. Dying as you would want me to. But, we still have a lotta talkin’ to do. Yup. A lot of talking.

Saddling up Buttermilk, donning my Annie Oakley outfit, we ride into the sunset – and will finish about the horse stories soon.

xo, Vicki

P.S. Please remember my family & friends in prayer. We cannot lose hope… not in our leaders, our beliefs, our religion and most of all those we are called to love.

There are rainbows with no rain. The most dead tree may blossom again. Both are accomplished by those who love us.