faith

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. 

Beginning

/ Shirleyjdietz / 8 Comments

Dennis, the husband, died early this morning. The bad thing, the difficult, uncomfortable, discouraging, sad thing is over and the good that was promised him is beginning. That’s the story that both of us have believed and we’re very happy to stick with it. A new beginning for him, made possible by Jesus Christ.

I love it that God did not want for any of his creation to be wasted. I love that he always planned a way for the imperfect to become perfect, and that the way had to be through relationship. It’s a precious thing to feel known, valued, and loved even when I haven’t earned it. Even more important, nothing on earth can take away or change what God has in mind for me. I love having the worldview of the one who made the world.

It’s a new beginning for me as well. I am a widow. A single. I’ve had 50 years of being otherwise, and I’m grateful for those years, and for being able to spend them with Dennis. There’s a lot to process here and I might not get around to doing that online. This post is a thank you to all who have followed our journey with Lewy Body Dementia. We learned a lot along the way. I will always have compassion for others who are experiencing this disease in any manner. Caregivers, feel free to reach out for support. I am on your side!

Where We’re At

/ Shirleyjdietz / 2 Comments

This was written a couple weeks ago, so it’s more accurate to title it “Where We Were”, but I’m not changing it.

It’s spring. Dennis and I are sitting in the living room. I am trying to feed him sips of coffee. He coughs and chokes each time he swallows. He wants to know where Shirley is, his wife. I’m not sure I’ve convinced him that I’m here. In a voice so soft I can barely catch every other word, he says he has had something he wanted to tell Shirley but she wasn’t here. Where did she go?

He says that he got a call from someone telling him that everyone should read the book he’s written. It’s a book about blood pressure. He wants to know if my mom has read it. While he talks he is always staring up at the ceiling as if he’s connecting with something up there, or in another world.

Yesterday’s conversation was my attempt to talk with him about death. I asked him if he was afraid to die. There are many questions I ask him that he takes the liberty of not answering – this was one of them. I explained that I was asking because I wanted to remind him there was nothing to fear. Death would be a good change because of what we believed about Jesus’s promises. I told him God would probably be in favor of him playing the trumpet again, give him back his ombissure. He would likely be able to walk again, swallow and eat again, and maybe even be with “his dog, Blackie”. He would be able to ask all the questions he ever wanted answered. I could tell it sounded good to him and he repeated some of it with as much excitement as I’ve seen from him lately. Then he went to sleep for the rest of the morning.

And he is sleeping again now. It is his default state, to be off in another world where none of these weird things are happening. He rouses only to inquire about new voices he hears in the room – some of them are real, some are in his head only.

I have been reading a book about another man who had Lewy Body Dementia, written by his wife caregiver. There are so many similarities. That man did not know he had that diagnosis until after he had a stroke. Like Dennis, his disease progressed much faster after the stroke. His time at one hospital after another and finally ending up in a nursing home sounded very familiar to me. I remember pushing Dennis around the halls at Maple Ridge, seeing all the elderly lined up in their chairs around the nursing station with vacant expressions on their faces. It was depressing to him then and he didn’t want to look at them, or to be them. The man in the book felt that same way. I am glad Dennis is not in a nursing home now, although I’m sure they try to be as kind as possible. I feel that I’ve been able to protect some of his dignity.