Vicki's Voice

Posts Tagged ‘dementia’

Today is Sunday.

I thought it was Monday. I believed it so much I believed the date/time stamp was messed up on my laptop. So much so that I rebooted my satellite dish, downloaded new programming and it was only when the tech said, laughingly, “It’s Sunday, Ms Bedderd. Nothing is broken. Happens to us all.”

But I still hope it’s Monday. I’m still somewhat confused how I lost a day in my brain, so thoroughly that I would have argued with her, but the evidence supported her theory that it is Sunday.

Yesterday, browsing over my FB Newsfeed, a name of person caught my eye. One of those charismatic religious leaders. It was a link posted by a generous, devoted Catholic. And I blew up, and wrote a wretched note about the whole thing. And something hit me. I wrote her, removed my inappropriate remarks, she in turn removed her defense. And then she wrote me a note, forgiving me.

So, although in my heart it’s Monday, I will accept it is Sunday. The Lord’s day. Let us be glad and rejoice…

Papa, are you there?? It’s me, Vicki

Photo by Bruce Bane.

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:

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

Jim Coyle

It began as mornings do: stretching and slow moving out of bed, ballet tiptoes at the dining room table, and then to take morning meds. Suddenly I was confused and went to my office – the burgundy couch with my new laptop waiting. I opened it as I usually do (with great reverence and respect) and moved to Facebook, to check on my cafe and farms. But instead of beginning my chores, I got anxious. A quick IM and my heart began to race.

Too much was coming at me.

Trying to breathe slowly and calm down, I began my list for this Tuesday before Christmas. 1) Call in Rx 2) Sort pills 3) order groceries 4) begin St. Jude Christmas thank yous … I couldn’t write, couldn’t face one more thing.

I began to sob, huge sobs that shook my whole body. I went back into the kitchen. I had no idea what to do. I pulled and slammed shut the cupboards, overlooking the overflowing basket of pill bottles. Shaking, everything seemed out of place, like the kitchen had just exploded and everything had been destroyed.

In the bathroom, I shut the door, shaking. “I will get dressed.” But despite the neat pile of clothing stacked in easy reach, I couldn’t find anything. I pawed thru clean clothes, throwing them in to the laundry basket. No. I need something, something.

After 40 minutes of opening drawers, pawing thru everything, I look right in front of me and find my Ativan, take one. Rush to bedroom, armed with rosary and phone. I tried to txt a mssg for help. I finally remembered how to dial the phone and called my daughter, who began calming me down.

“Its just a bad day, shhhhh. It’s going to be better soon. I am on my way. Can you hold on until I get there?” I wept I could, I would stay in bed.

She came, she took care of everything. I never did change. About 8 tonite I tried again, and everything makes sense. Whatever chaos set me off was gone for now. The decisions and projects have a timeline that my family will help me with.

Besides holding a phone, a rosary and a Kleenex box, I held each of you close to me knowing you were here with me.

It was just a bad day.

Love
Vicki

Today's practicality is yesterday's comfort. I keep making my home "Vicki safe", so I can stay here a little longer.

Who is that lady in the mirror? What is left of the original, who is replacing her, and when?

It's comforting to know that even the scariest days sometimes come together in the evening to bring us peace. Photo by Ron Hanson

In July, 2009, I was diagnosed with Frontotemporal Dementia (FTD) – Picks disease. Looking back, there were symptoms, but no explanation for what I was experiencing. As happens with most of the estimated 250,000 people with FTD in the United States alone, the correct explanation and diagnosis didn’t come until the disease had been progressing for probably 5 years.

I have been searching online for other people with FTD, hoping to hear their stories and share mine. I am grateful for the few I have found so far, and am continuing my search. With the hundreds of millions of people on the Internet, there must be other people like me online. We need to share our stories while we can. And the more you learn about this disease, the more you’ll realize how true these words are.

I hope that by sharing my story, I’ll help other people with FTD-Picks, their families and their friends. And please let me know about people and resources who can help me and my family – and help tell more people about this terrible disease, so often missed or misdiagnosed until it’s relatively advanced.

The earlier entries on this blog are notes I first posted on Facebook starting Spring 2009. As you read about my journey, I hope you’ll feel free to write comments, to tell me and other readers your story, to participate in the online conversation.

Vicki

Today was a black day. I didn’t want to harvest on my FB farm, or cook in my virtual cafe. I didn’t do the exercises I desperately need to maintain my “buns o’steel”, and learn to walk better. Living with this disease is a quiet thing. I have days, like today, where I can’t move at all. There is no energy. Great apathy, though. There is no muse to say “knock this shit off.” And so I watch the morning sun fade into grey, then darkness. Unable to move. Unable to Facebook. And I wonder if I should photograph every wall and space in my home, so when I am in a foster care home I can say “this was mine, and I earned it. And I loved it. Or, “this was Gus, my dog before that great fall down the stairs.” And the frozen annuals and perennials on my deck would have been amazing this last summer, or next spring and for all springs to come after me.

I once had a friend who would challenge me and make be silly. totally playful, but they are gone. Maybe it’s my disease, maybe it’s my changing personality, maybe they are just too busy. He is gone, and much missed. My Muse’s droll humor, and Eeyore-esque mannerisms was what kept me trying. Laughing. But although I have a void, God has sent in new reserves, other kinds of muses.

There is an organization, The Association for Frontotemporal Dementias (FTDs), that has a page for patients and caregivers to blog. Mostly it is for caregivers. But there is nothing on the patient blog. I called two days ago. Basically by the time they find a diagnosis, it is too late to post for patients to post. “too late to post”. Facebook has what 400 million viewers? Isn’t there one person like me out there anywhere?? Am I the only one left who can write and speak?

From “What if it is not Alzheimers?” it lays out my future, which I had just rehearsed with my family while hospitalized. “At the end, they will lose the ability to speak, they will become mute.” There is no cure. There is no treatment. It sounds yucky. Social blunting, apathy, lack of compassion. I have a feeling I won’t be all that nice a person. I think the word I’m looking for rhymes with ‘itchy’.

My dinner lady who brought me a wonderful lasagna, said her cousin, in her 50s was diagnosed with FTD. In 6 months she was mute. In another 6 months she had passed, at 54. Not much time to tell a story. To ask questions. To go to a website and blog about it. I have been blessed.

I know I have seen miracles in my life. I know because I am living one now.

So far, I am a lucky one. Black days come to everyone, but it does remind me of “The Dark Night of the Soul” a bit.

As for the friend, guess it will have to be me sometimes. “So you have bad days. So, each pimple scares you and makes you wonder if it is ‘a sign’. You’ve had your pity day. Now look to tomorrow. Knock that crap off and live a life of believing all things are possible.”

The link to the Association is www.ftd-picks.org. If you know others who could use some support it is a wonderful site.

Lord. Let me remember these days, these times of babies who are my grandchildren. And keep this image, like the digital frame, running thru my mind and bring me solace in the days ahead.

Felt a little ‘foggy’ today. A friend had stopped by, and it was an effort to focus on him. I said “I’m sorry but I am seeing you from a distance. Can barely hear you.” Two hours later I was in the middle of something called “Distonia” facial and body spasms, not unlike a seisure but I am fully aware of everything. The extreme pain, the terror as my eyes convulse closing shut so tightly that once it left my eyes bloodshut. My jaw clenches shut and I cannot speak, then my tongue will push through and extend to the most painful lengths, then my lips curl, nostrils close, and thru all of it I cannot speak, cannot move.

With God’s good grace my daughter, husband and grand-son came by, like if on cue. They took one look at me trapped on the couch, and went into their now experienced mode. Beth massaged my facial muscles, while Keith tried to unknot my feet and calves from their spasm, all the while saying ‘breathe, breathe, it’s not as bad as last time. You know you can do this.” And I tried to implore them with my eyes or grunts, but my hands were curling and my body was trembling. They pushed the pills through my lips, and in a moment of reprieve I could swallow, and then it would begin again, like labor pains but with no positive end except to survive.

After a few hours, they helped me into bed, stayed by my side for the next few hours, cool cloth on my head, and we wept. Wept that I had to burden them with this, and that I was burdened with this.

The next days I would not be able to move, save with cane or walker. Today I still have trembling and pain.

I pray for those who pray for us. And offer my gratitude for all the help that is offering itself to me.

It feels like a volcano errupting in the cornfields. Nothing you would expect. Something you expect will kill you.

Help, I'm in here and cannot get out.