writing

A Forthcoming Book

/ Shirleyjdietz / 1 Comment

Hopefully, this is the last assignment from my publisher.

The account I’ve written about my experience caring for my husband through years of Lewy body dementia is soon to be published. I’ve been thinking about the main takeaway for readers of the book. What did I mean to communicate? 

Many of the stories in the book told of the daily struggles, frustrations, and challenges encountered during a prolonged terminal illness. I didn’t know at the time how long Dennis had to live, but I knew time with him was so much shorter than we had wanted. As I wrote about the hard times, I was reminded of how precious the small, ordinary moments can be. I want to remind readers that those moments can be found if they look for them. As I learned to look for them myself, the exercise changed me. I live differently now. I pay attention better. I even verbalize my joy and gratitude for the small, the unique, the never-to-be-had-again experiences.

One of those moments I was writing about… No we are not aliens.

This experience of seeing my husband of fifty years fight to survive, even as he clearly wasn’t winning his battle was so difficult. An unexpected diagnosis like this makes no sense if one does not believe in God, and know him. For me, it was important to know that God’s character demands that he give purpose to everything in my life, and in Dennis’s life. He is not wasteful. There was purpose in what we went through. Going through hard things is always valuable if we know God. For those readers of this book that desperately want help, notice that I often referenced the times when we turned to God for answers, for strength, for comfort and peace. We got what we needed and you can too.  

There may be comfort in knowing that others are experiencing similar trials, and I hope my accounts provide that for my readers. You are not alone. Although I never intended to write a handbook on LBD caregiving, you may find ideas or perspectives that help you with some of your problems.

Finally, as I’ve spent the last three years without my husband, I’ve also watched others go through that kind of loss. Some do not adjust well at all. I process and come to accept the life God gives me by thinking and writing. Others turn to professional therapy, to personal friendships, or to some other outlet for the recurring feelings that need to be expressed. One of the most important things that I mean to communicate is that it is okay to talk about those feelings. Even if they are not beautiful, kind or faith filled, it is okay to name feelings in order to move past them. Find someone who will listen, find an audience. Yes, things have changed and you are different, but you can move forward. 

I intend to write my story of moving forward. It is my hope that what I write will help in that regard as well. Your one life is the adventure God meant for you to have. Don’t let it be short changed. 

The Elephant

/ Shirleyjdietz / Leave a comment

Part of my problem as a writer is that I often feel like a minor player in someone else’s drama. Even if they don’t write their own story, I feel like I’m stealing if I write about it.

In searching for reasons why he was diagnosed with Lewy Body Dementia just weeks after his retirement, the husband has wondered if he is supposed to share his experience with others. Could it be he is meant to encourage others in some way, even though he is pretty sick about this whole thing? He actually says he might start a blog, or write stuff down as he thinks of it. For several reasons, I think the chances of him writing anything are slim.

For one, he has a history of brilliant ideas that never see action. I don’t see his diagnosis changing that.

Reason two – he doesn’t have experience expressing feelings. He has them, but they don’t usually bother him or beg to be shared. He would like to share things now, but they end up coming out in long, convoluted histories of his life journey accompanied by tears, and a tone of desperation and sadness. He’s doing it a little better now, but the first couple of weeks were tough and any compassionate person who had time to listen patiently ended up crying with him and giving him a hug.

Reason three is simply that writing is work and work isn’t something he’s looking for. Too much mental work makes his head spin.

It’s true that my story has a lot to do with his story but, of course, I tell it from a very different perspective. He reads what I write. I wonder if I will be able to write what I really think or will I change the narrative because of the effect it might have on him?

Interestingly, the two things that have helped the husband and I know each other better in the last few years are our “together” prayers and my blog/journal. I guess in each instance I tend to be more open, truthful and informative. In each instance he feels less threatened by my words because they aren’t spoken to him – they are conversations with God or my readers. He listens better. And the same goes for him when it comes to telling God his thoughts and concerns – one might as well be honest. When he prays, I learn things about him that he doesn’t think to tell me.

It certainly isn’t that I don’t want him to write his own story, from his own perspective. I do. But not writing about this part of my own life has been hard. The vague feeling that I couldn’t write about this big thing happening to us, has made me not write much at all. Somehow, when there is “an elephant” in the room, so to speak, writing about anything else takes second place to wondering about the elephant and what it’s going to do next.

That elephant is on my mind most all the time. I might as well write about it. Probably have to. Just sayin’…