Beginning

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

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.