Yesterday – 7/11 – was Free Slurpee Day.* I was on a journey to Dr appt with my daughter, Beth.

We were silly updating my files. “Problem with erection” – we answered ‘yes’. “Premature ejaculation” we answered see “erection, no penis”. The nurse and doctor were in stitches with our banter. Time came to list symptoms, I sent her out of the room.

FTD seems to send most of us to Depends – with either loss of bladder or “other” control. I don’t know why. I just know my friends, like me, are no longer friends with our bladder or bowels. Always a let down (no pun intended).

Our children don’t want to hear about the reality of what dead brain cells do. It’s hard to find someone to listen to our concerns. Sometimes a doctor’s visit helps, but I know now when the caregiver stays (I wax wonderful) and when they leave. The truth to a professional is urgent.

Urinary Tract Infections seem to be part and parcel of FTD. I have no idea why. But I was told the disease wouldn’t kill me. It would be most likely UTI or pneumonia. A strange choice for death.

“Kill me through my bladder – no, wait. Kill me through pneumonia.” For me, I’d like this damned disease to be pinpointed and say, “She died from FTD”. Her brain collapsed as it died and all these complications resulted from that.

I understand FTD is seldom listed as a cause of death. But all the complications stem from that honest fact.

I hate this disease. I am an Elder with it, but when I read petitions from 30-40 yr olds I am sickened. I think it is the disease of the 21st century, as we burn ourselves out proving to our company how worthy we are.

I think that is how I have mine. But it’s just conjecture. Not enough studies, no medications, a flip of a coin … that’s how we are diagnosed.

Next week I will celebrate my 3rd year since diagnosis of 6 months to 2 years. My neuroligist hates me I think. I am not playing by the FTD rules, I guess.

Papa, are you listening? It’s me, Vicki

* A “Slurpee” is a frozen flavored drink sold by the 7-Eleven convenience-store company since 1967. Find out lots more about the Slurpee on Wikipedia. And no, this isn’t a sponsored post 🙂

And her husband is not the joyful, hopeful patient as we seem to be.

Dear Betty,

First, we only write on days that our brain and body come together to pull us out of our chairs. And we know if we call our family & caretakers ONE MORE TIME they might want to hurt us – just kidding.

I don’t write when I am suffering from rages that reduce me to a heaving mess on the floor, sobbing.

Ditto, when my voice isn’t working and my brain, now running at a 33.3 lp record range leaves me shaking and I don’t write when my vocabulary is like an Old Salt. When if my dog barks one more time, or the dog who stays with us leads the pack, and I begin to see them simmering on the barbeque.

On the days I have to put myself to bed, and never get out, because my belly is so swollen with anger at no one, nothing. And frightened, because I cannot seem to stop it.

I am frightened of how these outbursts come more often. Of the weakness that seems to cause me to fall and injure myself. I wonder – as I’ve read – if we really do threaten harm to ourselves or others as we get closer to our expiration date.

If you join the FTD Support Forum as caregiver, you will have a better perspective than I do. www.FTDSupportForum.com – they have weekly online chats. An eye-opener is found at http://ftdsupportforum.com/forumdisplay.php?f=62 for both the patient and caregiver. Lots on improper behaviour, and socially embarrassing things. Might make you feel better.

We are a shuffling lot of lucky patients who still can communicate via Internet.

We are a shuffling lot of lucky patients who still can communicate via Internet.

So now that you see my yucky days, and that I am not wise or praising anyone, and get discouraged -and worse take it out on the people I love most – maybe you can read our posts on Howard Glick’s “FTD/Dementia Patient Support” page on Facebook.

Keeping you in my prayers – all of us in our prayers.

Blessings & love, Vicki

PS ‘Honey we are a mess’ is the best I can say about we FTDers.

This was a good year, this 1956. We lived in Cavanaugh’s Court – just off US-27 North, Lansing. May had been gentle for Michigan. Tulips had not been frozen out, the lilacs were over-blown and succulent, and the apple and cherry trees were popping pink & white, grass tender-green and soft underfoot – even in a poor trailer court with oiled cinder roads. Mom would say that after a rain was her favorite time, with it’s “clean, dirty smell”. And the world, to me, made sense through her eyes.

In 1956, in May, we both made our First Communion at St. Therese Catholic Church. For the last year, I sat at my Mom’s feet during her “conversion” classes, learning about the religion she married into, the children she had offered into baptism. And now, former Methodist, newly Catholic, it was Mother’s Day and our mutual reception of one of the greatest gifts of the Catholic church – the Eucharist.

As the years went by there wasn’t much to identify me as Catholic, as I had “inherited” it from generations of French and French Canadians. Once, on the Bishop Sheen show -that we watched religiously (pun intended) – he asked his audience: “If you were put on trial for being Catholic, what evidence would they hold against you?”. Whatever age I was then, it stuck with me throughout my life.

If you were put on trial for being Catholic, what evidence would they hold against you?

I would have gotten off with no sentence as I worked so hard to blend in with whomever I was with. My mother, on the other hand, would have served hard time. She was the only one I knew in childhood and throughout my adult life who never gossiped about anyone, never saw their flaws only their gifts or sorrow, skipped judgement, never measured the amount of time she gave to someone, never asked for reciprocity nor reward, and never knew what a gift she was.

She never compared herself with others. She was neither too smart, nor too ignorant; too plain nor too beautiful; too awkward nor too poised. She just was… Beverly Roseann Therese Peterson Wells.

Her memory was stunningly short, and amazingly forgiving. And with her simple outlook of herself, she judged others. In fact, judged them not.

She would have stepped off the stand, the jury pronouncing her guilty of being Catholic/Christian to the highest degree. And she would have walked to them, hugged each, and wait for the next challenge to her life.

Was Bevvy perfect? “Hell, no,” she would have replied. And she’s probably spot on about that. But she was as close to perfect as I’d ever want to be exposed to. Her love was bigger than her 90 pound, 5’5″ frame. Her ability to encompass those with her love: boundless.

But what, in these lagging days of my simple life, I recall most is climbing into her lap, our rootbeer and popcorn at the ready, in front of an oval black and white TV and hearing her whisper, “We are the most lucky family in the world.” And feel her hands braid my hair, feeling her breath, riding her laughter at Red Skelton or her Danish kinsman, Victor Borge, until my eyes would close, and sleep would overtake me.

We are the most lucky family in the world.

Mama, you are my model for Papa. I cannot wait to see you again, as my mother and wife of Perry and grandmother/GREAT grandmother of the most amazing children you have never seen. I might be as proud of you, as you are of all of us who survive you. I long to see you again. Love, your daughter, Vicki. PS Happy Mother’s Day <3 and Mom, I know you think, as damaged as I am, that I am beautiful. Ditto.

Happy Mother’s Day to all we wounded and gifted warriors! Especially those who suffer loss of their families through Alzheimers, FTD or others removed from us prematurely. We love you in all your roles, past & present. Please be sure to tell us we are loved. Often…

Beverly died in 1983, at 53 yrs. old, from lung and brain cancer. Often fond of saying “Everyone has to die sometime…”, near her death she admitted she was wrong, but too late was the learning. Her last words as a woman and parish employee: “[Fr.] Billy, did you bring the last collection?” Once settled, he gave her communion, and later she passed in her sleep with her loved ones around her. Would she be convicted as a Catholic? Yes. Without a doubt. And I would be proud at her sentencing.

Those were her last words to the world. Not “I will miss you”, not “I love you”, but still in her parish secretary role, did we count the last collection. Bevvy you make me laugh.

I want to share beautiful thoughts from my FB friend, Michelle. This her response to my posting in April, 2012. Sometimes I get so overwhelmed with my ‘me-ness’ I forget to look up and see the wonderful people who care for me. Thank you, Missy Michelle. xo, V

My dear sweet Vicki! Your words meant so much to me about looking out the window and being unable to do what you want to do. My dad went through the same thing. He would sit at the windows for hours just watching the birds and the trees getting leaves as he always planted a flower garden and a vegetable garden.

He would talk (when he still could) about the old days when we all (my brother, mother and I) would be outside while he tilled the garden and then we all helped plant. Spring is definitely the renewal time, when browns turn back to brilliant greens and flowers start slowly poking awake. enjoy looking at your window and watching all that is resurfacing.

If I knew where you lived, I’d be so happy to come plant some flowers for you. Michigan isn’t that far from Indiana. Papa is so happy to provide us with wonderful sights and scenes and flowers and trees that I know He’s particularly happy that you’ve been enjoying watching the activities. You are such an amazing woman. One I have learned so much from and will continue to learn from.

Bless you, for you have provided such renewed faith in me that was lost when I lost my father. Oh, and I’m serious, I’d love to come plant a flower garden for you.

Love you bunches,
Michelle B

You are really, truly serious, Sista? I live in DeWitt MI 48820 and we should set up a date. Leave me a message on FB and will give you directions to find me. I love your sense of humour, your questions, your concern for me (go figger). ;o)

Might have to take you to Scoopy Do’s, for Vanilla Frosting ice cream or whatever. Thank you … V

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