Vicki's Voice

On Friday, a mutual friend and I escorted Vicki to her oldest grandchild Zack Whaley’s wedding – the family’s first wedding of their generation. The weather couldn’t have been better for the ceremony on the shore of Lake Michigan.

The wedding was a wonderful celebration. And it was extra-special for Vicki who didn’t think she’d still be alive to see any of her grandchildren married. Her FTD keeps progressing, making times like attending Zack and Loren’s wedding very, very special blessings!

Thank you, Papa. And may your life always be Blessed, Lauren and Zack.

Jim Coyle

“End of life” is something constantly in mind but not spoken of too much on Vicki’s journey. Most of us don’t like to talk about death, even when it’s clearly going to happen. Since finding out about Vicki’s Frontotemporal Dementia diagnosis almost 4 years ago, I’ve “willed her to live” as long as she can, and have been privileged and blessed to spend quality time with her these past few years. We genuinely treasure one another’s friendship. Neither of us know when life will end – and more than ever before I’m learning to live in and appreciate the present moment.

Vicki’s diagnosis came suddenly, unexpectedly – even though symptoms had appeared much earlier. As is so common with early onset dementia like FTD, the disease was at an advanced stage when she was diagnosed. Since then, through Vicki and then other persons I’ve met on this journey, I’ve seen the impact that planning – and lack of it – can have on quality of a life that seems to be approaching the end.

It’s never too early to “plan” for the unexpected. And it’s never too early to plan for end of life. Video of a short talk by Judy MacDonald Johnston about end of life actions was just posted, and I want to share it with you, hoping it will be helpful:

Here’s a link to the worksheets Judy mentioned in her talk.

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In a few days I’m planning to escort Vicki to a celebration with her family. I’m looking forward to it, and whatever else we’ll be doing in the time remaining.

Jim Coyle

Vicki and I recently read an excellent article about one man’s signs and symptoms of FTD – and the need to keep pushing for an accurate diagnosis. Brandt Henderson was 58 years old when the article was written last year. He shares how he’s experiencing FTD and what it means for his family.

Brandt’s early signs included apathy and disinhibition. In addition, the article says:

Brandt was also having trouble holding it together in daily life, finding it increasingly difficult to complete basic tasks at home or at work. “I would look back on a week of few accomplishments and vow to do better on Monday, or after vacation, or… But I could not recapture control of my quotidian duties or enthusiasm. It took two years of my insistence plus testing to get an accurate diagnosis.

This article is one of a series about people with FTD, and well worth reading. You’ll find the article online at the Forbes website.

Vicki and Jim

 

I write to you, my friends, daily in my heart and mind. Yet I never quite get to a keyboard.

So, in the next few weeks I will try to catch you up on life as seen through my puffy eyes ;o)

Today is the first full day of Spring. And it’s snowing. Unlike prior years I rejoice that somehow the inevitable changing of seasons, the swift passing of days, months and years has by some miracle, been put on pause.

 

My life feels like I’m on one of those combo moving walkways / up escalators that has somehow been speeded up, and I can’t find a way to get off. The other lanes around me are going so much slower, some folks are actually running on the walks and skipping steps to get to their destination even more quickly. I just shake my head, recognizing myself, not so long ago.

Whether it’s age or dementia, everything has escalated, making everything too fast, at a time I’m desperate to move slowly, smelling those roses I missed for so many years, to take in the sights and experiences long enough to make a memory.

I go to bed on a Monday and it seems I wake up on Sunday. What has occurred in between is but a blur.

I used to live for weekends, but now I relish the patterns of Monday – Friday. The fact that the Today show is on at 7:00a each day, that there will be a 6:00p news show. It regulates my breathing, my racing mind.

Weekends are chaos where I feel like I’m being tossed into huge voids, with no structure.

Prayer helps the panic, and it runs like background music in my brain. If I pause, I hear my mantra on auto-play.

And in honesty, I fear not the destination of death, but how long will I remember anything, any one. How long will it be when even my family cannot recognize the Vicki who was, with the person in front of them. I fear each time it takes longer and longer to form a word. And I fear each time I just give up, thought lost, frustration or anger replacing any other emotion I had had.

But today I am grateful Papa put Spring on hold – even for a few hours – so I could try to settle into it and embrace the next chapter.

With love & blessings,
Vicki

FTD is a strange disease in so many ways. In the 3-1/2 years since Vicki was diagnosed, I’ve seen her have ups and downs more extreme than any roller coaster. It can be hard for her to accomplish tasks some days; other times Vicki amazes me with her mental speed and ability.

Vicki has been using online games not only for social contact, but as a way to exercise her brain/mind to help slow down the effects of FTD. A couple of weeks ago she introduced me to a fast little iPad/iPhone word game called Ruzzle. It’s simple: just find as many words as you can in 2 minutes by connecting letters shown on the screen.

Of the many rounds we’ve played, until 30 seconds ago I had never won a game. Vicki is sharp, very sharp. That’s great to see! (Though I admit that being repeatedly trounced is a bit humbling.)

During my last visit with Vicki, we set up an Apple TV for a mutual friend – and Vicki was a whiz at adjusting settings, entering accounts, and demonstrating how it all worked. These were the kinds of things she’d done so often while she was still working. But some days – and weeks – it’s hard for Vicki to do even everyday routine tasks.

And so we celebrate the good moments and days, and we share the frustration and sadness of bad times as her FTD affects Vicki’s life – and has an impact on her family and friends as well. One thing’s for certain though: I am blessed to be able to share Vicki’s journey at least in a small way.

Thank you, Papa.
Jim