Vicki's Voice

Archive for April, 2010

(shared by Rose Pacatte, Diane De Ava, April 20, 2010)

Walking can add minutes to your life. This enables you at 85 years old to spend an additional 5 months in a nursing home at $7,000 per month.

My grandpa started walking five miles a day when he was 60. Now he’s 97 years old and we don’t know where the hell he is.

I like long walks, especially when they are taken by people who annoy me.

The only reason I would take up walking is so that I could hear heavy breathing again.

I have to walk early in the morning before my brain figures out what I’m doing.

I joined a health club last year, spent about 400 bucks. Haven’t lost a pound. Apparently you have to go there.

Every time I hear the dirty word ‘exercise’, I wash my mouth out with chocolate.

I do have flabby thighs, but fortunately my stomach covers them.

The advantage of exercising every day is so when you die, they’ll say, ‘Well, she looks good doesn’t she.’

If you are going to try cross-country skiing, start with a small country.

I know I got a lot of exercise the last few years … just getting over the hill.

Every time I start thinking too much about how I look, I just find a Happy Hour and by the time I leave, I look just fine.

We all get heavier as we get older, because there’s a lot more information in our heads. That’s my story and I’m sticking to it.

You could walk this over to your friends but heck, just e-mail it to them!

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I remember being toted by my blue (or violet) haired granma Mimi to the Indian River Shrine “The World’s Tallest Crucifix” . It was HUGE, and there were 28 steps leading to the top of the hill. Each step contained a relic of a particular saint. Trouble was, the spiritually inclined would take the stairs on their knees, bowing, kissing the relic and saying a prayer, then pop up and struggle for the next step.

Picture me, say 5 years old, following a long line of granma behinds, 28 ahead of me, climbing, bowing, kissing, praying. It’s a memory I will never forget. Being mooned by those 1954 ladies in dresses, rolled down socks, girdle and corset ablaze, burnt into my mind. I think that’s when I decided the only safe place was to be at the 28th step. Year after year. ‘Be first and thou shalt moon all others behind you.” The motto helps me a lot today.

To learn more about The Cross in the Woods, Indian River, MI see their website www.CrossInTheWoods.org It really is lovely – of course I’m viewing it from the 28th step. ;o)

Papa, lead us through our fears and tears, to laughter. Aging is only for the brave, but living with those aging or with terminal illness, makes saints. “Life is too important to take seriously” has been attributed to Oscar Wilde and John Lennon. But they are words of wisdom.

Love, Vicki

 

Richard Taylor is one of the best-known authors and speakers about dementia from a personal perspective. Richard was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. What he has written and speaks about relates to persons with all types of dementia, not just Alzheimer’s Disease. Through his book Alzheimer’s from the Inside Out, his Blog, and speaking opportunities, he has been working for almost a decade to change the stereotypes and stigmas of dementia of all types.

This video highlights Richard sharing a few very important aspects of life with dementia:

Last August, Richard Taylor was interviewed for a Leaders in Eldercare audio podcast by Ryan Malone. I’ve found this interview to be very helpful for people dealing with family members or friends with dementia and for people wanting to understand the effects of these diseases. Be sure to check out the podcast website. Meanwhile, I encourage you to listen to the conversation by pressing the arrow on the player below:

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Jim Coyle

 

It was 1967. Dad had the biggest, baddest 68 Mustang Convertible WITH 8 track! Copper finish, cream leather interior. it was raw with sexiness. Not unnoticed by the football team, mind you. After work, on Saturday’s at the Grayling Restaurant, sometime my dad would come, switch cars with me (he got the green Opal from God knows when) and when I turned off the lights, and locked the door, there would be my dream car. I’d quickly put in my 8 tracks of choice, often something from Bobby Darin (oooh Mack the Knife), Bobby Vee, Ricky Nelson, the Turtles (Turn, Turn, Turn), and “Run, run, runaway” by Del Shannon. In the passenger seat were my cool clothes, capris, tank top, matching pointy shoes and chiffon scarf.

Quickly running back in, I became my teenaged self. Hopping back in the car, alive and feeling fresh even with 10 hrs waiting tables, the beat from the stereo began my feet moving, fingers tapping and the rhythm flowed from my toes to my head.

A couple quick turns on Main Street (‘draggin’ the Main’), honking and laughing with classmates in all sorts of vehicles. I’d usually snag a gal friend and then after driving all 6 blocks, headed for Spike’s Keg o’Nails on ‘special Saturdays’ or on to Curley’s or Days’ Drive-in. And if it was a Spike’s night it would a burger and a vanilla coke, thowing dill pickles at one another, pretending to ignore the boys.

Fast forward to 2010, and you will find me vegetating. But tonite, with the air crisp, and the stars like diamonds, I decided at 11:00 pm that I was hungry and needed something to eat that wasn’t a cold ham & cheese sandwich. Brace on, rangy hair in a pony tail, requisite magazine for lone diners, I grabbed my cane, and slid into my Mazda. Again, I made the whole 2 blocks in minutes with the Shandells blasting, windows down.

As I parked in the handicap spot, I heard the music from the sidewalk. Entering the redwood tavern, I was greeted with a blast of jazz played on the electric guitar. And singing. The smoke had calmed down at this late time, and there were maybe 10 folks there. Within minutes, we began a rapport with the musician, cat calls, bad jokes and one-liners. After keeping up with them with my bawdy sense of humor, I was still dubbed “the Nun”.

For 60 minutes I was unaware of my bustier or sitting on my cane. I was Miss Grayling, swaying to the music. It was 1967, with an amazingly full life to be discovered. Whatever was left of brain was having a great time. I had recovered the Pony, the Boogaloo and the Hitch Hiker, and the clean wood floors for awhile were covered in sawdust and peanut shells.

It’s good to be alive. Thanks, Papa.

Love, Vicki

 

Anyone on a board hosting a convention knows they will muck something up at some time. But not ME!! I was on the board, helping to bring break food in, since they hadn’t a large allowance. The meetings were to begin one day earlier … But I got totally lost at the airport. Was there 8 hours looking for where I was supposed to be, finally rebooked. I fibbed that my flight was canceled. It was the 4th time this had happened. So frustrating. How could this happen to ME??!!

And when I finally arrived, a board member said in front of my boss, “Well, Vicki, if you are sincere about being president you should probably have been here.” My boss looked at me. And before I could say anything, the other party said “And lying about a canceled flight won’t help.” And then I wanted to crawl in a hole as my boss, stunned, looked at me for a long time.

I was up for election as president of Catholic Academy, something I had dreamed of for 8 years. But why stop there?? I had a booth I needed to be at when I wasn’t in a meeting. Not a problem, juggled multi-tasking all my life.

Then my good friend came by – as the aisles and booths were filled to overflowing – and said “Vicki, will you do the invocation for today’s luncheon?” “Not a problem, if you have it written out,” I responded. She flung over her shoulder, “I don’t have anything. You can wing it!”

Omg. I could not wing it. My brain just closed down. I had 5 minutes to prepare. Our booth was, luckily, on the route to the Ladies Room. Not a lot of eye contact, but the traffic was good. For 3 days I’d escorted ladies – with no obligation to my product – into the Ladies Room and showed them the quiet back exit.

Something happened when I was told to extemporaneously do the ‘invocation’. My favorite author, Mary Higgins Clark was there to honor those attending. But she couldn’t make it, but her lovely daughter took her place. We were honoring Cardinal Foley and the best Editor/Writer, Fr. Jeremy, from St. Anthony Messenger Press. A BIG luncheon, to say the least. The MC and his counterpart had rehearsed. When I heard there was no script for me, I just shut down.

Since my booth was the entrance to the ladies room, I ran to my comfort zone for 5 minutes. However, as I rested on the red lounge, 3 men suggested I might like the Ladies Room better. ???? I looked around and sure enough, men were at urinals and I had fled to the wrong restroom.

I fled, with one note scrawled large “God, help me!!”

Friends said I was funny, but I don’t remember. All I remember was an out of body experience, looking down at someone I loved, floundering, grasping for any words to fill the silence. I remember thanking the men in the men’s room … and near the end, promoting Mary Higgins Clark to a saint.

To this day I am very vulnerable about what people say I said to Cardinal Foley, Fr. Jeremy OFM, and everyone assembled there. I have no recollection of what happened. But after this embarrassing 15 (!!) minutes of infamy, I can recite what everyone said: “Say Amen, Vicki, next time just say Amen.”

That was the first time (after getting lost for a full day in the airport) and blabbing about why I should be Catholic Academy’s president, that I knew something was wrong.

I had never heard of FTD/Picks as an early onset dementia (I was in my 50s) with the shortest lifespan, no medication, no cure, the fastest killer of adults between 20 – 50. I only knew I was ashamed of what I presented to Catholic Academy and as the awful world’s longest invocation …

Humility has become my angel’s wings, wrapping herself around me. I have days I cannot speak at all (where was FTD/Picks when I needed it???!!). But most days I can write. And my long term memory brings out times of crushing embarrassment.

I had such simple, humble plans for CA … but now I have the same ideas about how long I will live and make sense when I write for others who have lost their voice and their words.

I pray that the Catholic Media Conference bears great fruit. How I would love to join you, but likely, I would probably forget the words, or the voice to speak with you, were I there amongst you.

Love to you all. Don’t stop being open to new ideas. The worst you can do is have dementia …

xo Vicki

Henri Nouwen is one of my favorite writers, spiritual or otherwise, a person whose writing, prayers and meditations usually seem as if they’re written just for me. I’ve heard other people say the same thing – it’s as if he speaks right to them. What an incredible God-given gift he has. While Henri is no longer with us, his words and spirit live on. On a recent day, one of Nouwen’s short meditations led me to think about my friends, old and new, who are at different stages of life’s journey.

I also remembered something I’ve experienced many times over the past 18 years. The first time was right after my first trip overseas, a wonderful pilgrimage to the Holy Land in 1992. When I got back, I shared about it with my family and friends at home, but felt an emptiness inside when I realized I couldn’t call my Mom and tell her about the trip. Mom had died the year before, and this trip was the first major event in my life since she passed away that I wanted to tell her about but couldn’t. I discovered a new empty space in my heart. In a way, I believe that Mom was with me on that trip and has been watching me since then. Even so, it would have been great to tell her about the trip and hear her voice responding. She was always interested in what her children and grandchildren were doing, and I’m glad she and I became closer during the last few years of her life.

This reflection by Henri Nouwen brought that to mind, and gave me a wonderful perspective on our life journeys:

Travelling – seeing new sights, hearing new music, and meeting new people – is exciting and exhilarating. But when we have no home to return to where someone will ask us, “How was your trip?” we might be less eager to go. Travelling is joyful when we travel with the eyes and ears of those who love us, who want to see our slides and hear our stories.

This is what life is about. It is being sent on a trip by a loving God, who is waiting at home for our return and is eager to watch the slides we took and hear about the friends we made. When we travel with the eyes and ears of the God who sent us, we will see wonderful sights, hear wonderful sounds, meet wonderful people … and be happy to return home.

Let our journeys be all they can be – eyes, ears and hearts wide open!

Godspeed! Jim

Picture us, in our bunny suits, on the Commons, with a special invitation by the mayor to kick off the Easter Egg Hunt.

Picture “- – -” symbolizing our routes, like in “Family Circus” by Bill Keane.

Picture us: End of day lining up for the judges, showing what we had collected.

The picture: lines of FTD bunnies, opening their baskets to claim their prizes, with a background of hundreds of un-collected eggs in plain sight.

The first FTD bunny proudly opens their basket: 3 sets of car keys, 1 egg – half eaten, cigarette butts, flowers, 5 business cards, a purse, and someone’s leftover McDonald’s Egg McMuffin. The judge looks to his panel and says, “In hindsight, inviting those with FTD to oversee the Easter Egg Hunt may have been an error.”

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Laughter is the best medicine, always. When we go into our chats each week FTDSupportForum. Free to speak about anything, right up to our dying, or loss of bowel or bladder control. With our ‘FTD family’ we can reveal everything without being judged, or taken from our homes by well meaning people who care for us. We console, encourage and accept one another just as we are that day.

I have to emphasize that day. FTD is a ‘hit and run’ condition. One day you can’t walk correctly, the next you can walk, but can’t speak; or you cook for your family one day then not eat at all for days. There are no peaks or valleys. There is our distinct ‘manic’ and normal is a flat line, we cry over an ant we stepped on, then turn on our family and lash out.

There is no set blueprint for this nasty thing. So every day, 24/7, we are on alert for who we will be in the next moment. Planning ahead for something might include: Depends, many Rx’s, many sets of pants, notebooks, Kleenex. Walkers or canes? Wheelchair or Little Rascal? Pay bills or go bankrupt? Sleep or insomnia? Recognizing you or asking for the 100th time: “Hi, I’m Vicki. Do I know you?”

Easter is the perfect season for us. Death and resurrection, followed by a new life. Only our Lent and Easter season plays 365/24/7. So in my heart of hearts I know we will be in heaven … but we’d like someone else to drive. Oh look! I found an easter egg or something (rolling it around in my hand, looking dubiously.)

Love, Vicki

This came through our guestbook by our friend, Colette.

I think it is hugely important to note. Patient Advocates: BE LOUD about knowing all the risks of major surgeries. I can relate with her information. I believe my condition moved to the forefront because of the anasthesia and recovery.

“Comment:
I have FTD. I was diagnosed at 52 and will be turning 55 this July. My experience that cost us everything (bankruptcy) was that they had to keep hospitalizing me and surgeries and they kept giving me general anesthetic which is contra-indicated with dementia. i’d end up in a psych ward for weeks. all the insurance money went by fast. when i finally demanded a awake procedure; i did not end up at psych ward but i do have to take a lot of meds to keep me from going manic. i type and speak (obviusly); but my ability to spell well and be proper in grammer has gone down. my concern with what will people think has gone way down.

love;
colette”

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Please join us in our conversations each Tues and Friday at 2:00 Central. You can find us at FTDSupportForum

Also, visit FTDTheOtherDementia. Our friend, Susan, has produced a documentary on exposing this secret killer of people as young as their 30s and into their 60s. This is not about Alzheimers, but something unknown, striking people in their prime. No cure, no treatment, no funding, no studies. You can also donate to the project there. Please help.

Love, Vicki