Vicki's Voice

Archive for June, 2011

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.

Hot. Steamy, wet hot. Walking through wet wool hot. Hair plastered to head and neck hot. Can’t breathe, can’t sleep hot. No matter how you turn your pillow no cool hot. Tossing and turning, getting up I lay at the foot of the bed, closest to the window waiting to catch a wimpy breeze. No screen, in no time a banquet has been called in my honor, after the ‘taster’ mosquito finds me juicy. Shut window hot.

Dozing I drift back and forth in time. To summers as a child, where my mom would sneak in, just as I’d fallen asleep, pulling the covers up to my chin, brushing the wet tendrils off my face. And place a kiss on my forehead. She’d repeat this about 20 more times in the night until we both woke exhausted. Being 90 lbs. she was never warm enough, but my father and I were always hopeful of a cool breeze from anywhere. Good thoughts.

I awake, startled, confused to where I am. Nothing is familiar, but someone had to keep covering me up, for I was swathed to my neck. I call for Mom, no answer. But this ball of fur comes charging at my face with a wet tongue for kisses, and I realize I am in my bed with a puppy named Beanni, who like Mom, is always cold, and nicely pulled all the covers back up, so he could burrow under them. He has a number of unusual talents, but still refuses to get housebroken.

But, to wake up afraid or confused in the middle of the night, waking up from long, sticky dreams that hang on for what seems forever, sweating next to this 5 lbs. of heat and love, I am grateful. Grateful for not being alone. Grateful that heaven has a thermostat, so when I finally meet my mother, she can bundle me up to her heart’s content.

Papa, are you there? It’s me, Vicki …and Beanni

A much younger Beanni.

Getting into a medical testing for Frontotemporal Dementia is only the first step. Paying for being in the test is even harder.

So far, I’ve had to cancel appointments 2 times. How long they will keep me on the list is unknown.

Mayo Clinic is THE leader in looking for the source of FTD and hope to find a way to slow it down, stabilize it and finally – and what I am praying for – a cure.

What you don’t realize, in any kind of participation in medical testing, is the out of pocket cost to the patient. My cousin, whose wife, passed away from ALS (Lou Gherig’s Disease) recently, was/is unemployed when she was diagnosed. They searched everywhere, and found a blind test in MS, an answer to a prayer. But you pay your own housing, travel, meals, etc. But, if one is facing a literal life and death situation there is nothing you won’t do to win the race over disease, and hold on to life.

I want to thank those who have contributed to help me raise the money to be in Mayo Clinic’s FTD study. I want to go to hang on to hope, to be there to keep the disease away from my children and grandchildren, to help if I cannot have a cure, or gain more lucid time. To be with others fighting, just like me.

Is this an “ask” ? It is.

With blessings and love,

Vicki