Our World Gets A Blanket

We sit looking at this view out our living room window.

Today we have a snowstorm in progress. We must be on the edge of it because there is very little wind, just a lot of heavy wet flakes. The temp is just above freezing, making the roads hazardous. Our caregiving help has the morning off because I did not want them to travel the 20 miles to us.

I put Dennis in the recliner (I feel like a 3 year old, “did it all by myself!”) and pushed him up to the living room window. He had his sips of coffee and is sleeping again. I have been outside making sure the bird feeders are full and taking pictures. It is a beautiful snowfall but I am afraid it will break some limbs off the trees. Sitting together, watching the snow – what a gift it is.

Monday we had a video visit with our primary care doctor. I am so thankful that virtual appointments have become a thing done well. I guess we have the last few years of pandemic to thank for that. Our visit with her resulted in our second attempt at getting Hospice help. There are at least two Hospice organizations in our area, and soon to be a third. Some are “for profit” and others are not. Apparently being refused by one does not mean refusal by all.

One characteristic of Hospice is the speed in which they respond. Monday afternoon I got a call from a nurse and an appointment for Tuesday morning.

Dawn, the nurse who evaluates and her trainee Julie spent about an hour meeting at our house with us yesterday. They left feeling that it was possible for us to get on their program and they promised to get back to us after presenting it to their superiors. Again, because of the feeding tube, Dennis has to have special permission in order for Medicare to grant payment. I guess whether or not it happens is not very important to me anymore. I’ve chosen the path we’re on and I know we can handle it without their help if we have to. It will be okay.

I have heard from so many family members and friends, in town and far away, and thank God for all the prayers and words of encouragement. Daughters Julie and Esther are making plans for a visit in the next few weeks. Dennis’s birthday is the day after Christmas. Our 50th anniversary is coming up in January. I have so much to look forward to! A kind neighbor sits with Dennis and allows me to get out for appointments and a walk now and then.

I am finding ways to take care of myself so I can take care of Dennis. So many of you have been encouraging that and I hear you. As a nurse, I have frequently said it myself to others and I know it is important. I think I’m doing well on that account.

Most important are your prayers for us. It means so much to know that our God is hearing our names mentioned to him by others. The accumulated effort of his people is influential and carries weight with God. It’s not that he needs a magic number of prayers before he can take action – he is always acting on our behalf and we feel unusual favor in all the places we’ve been. But I believe he is delighted when his people act like they have gotten his point – we are here to learn to love each other and care.

Miraculous healing is not the point either. It’s sometimes a wonderful encouragement and evidence of God’s power, but what we are promised is that we will die of something in this imperfect world. I’m okay with God deciding when and how. He knows so much and makes the best decisions! That’s how I look at our situation, and I know Dennis agrees with this too.


I. Need. Another. Cookie.

Yesterday’s thought provoking incident happened around supper time for us. The family had scheduled a Zoom conference to do some advance planning for our summer reunion. I came over to the husband who was sitting in his lift chair with the tv on, his eyes were closed. I told him I was going over to Mom’s house to help her get on the Zoom. She is always confused about computer events.

He opened his eyes and listened to me but had such a blank expression that I started over and reminded him of the details, the Zoom, of the reunion we were planning, and watched him get totally confused by it all. He said so, repeatedly.

“I’m confused. I don’t know, I’m just confused.”

He couldn’t find more words to describe his mental state, and that alone was causing him concern. I could see that he was getting frightened.

“Can we pray about it?” He finally asked, shaking his head. So we did.

He then decided that the best thing would be to go back to his bed, even though he had only been up about half an hour from his last nap. I watched him closely as he went to the bathroom, took off his glasses and hearing aids and laid down. He was a bit confused even in that routine. But he slept for a couple hours, got up and ate supper, and apparently felt more himself.

What was going on there? I don’t know. But I realized that I was past the point of rushing him to the ER for stroke intervention, or any other kind of help. He didn’t ask to go either. Weird changes have become so normal. Some of them I’ve just read about and others have actually happened to us. Once he told me he couldn’t see the food on his plate and wondered what was happening to his eyes. Other times he has decided not to go out to church, which he normally loves to do, because he is feeling “foggy” or hasn’t had a good night.

I wish I could have the conversation with him about what he does want to have done at times like this. The trouble is, he still hopes for a touch from God to take away this disease. He wants to live…. Who wouldn’t, if they were well. I wonder if he would understand that I think the hospital would only prolong his life with LBD. I wonder if he would agree that his present state is not the picture of quality life. I wonder if he would feel like he has lost his advocate.

If God plans to heal him of this dementia, couldn’t he also heal him of a stroke, or an infection, or any other life threatening ailment? He could, and I am content to let him (God) decide when those things come up, without outside interference. But what kind of caregiver, what kind of wife, does that make me? I’m just not sure. I think God and I are at peace with him giving me directions for these scary moments. I will need a nudge one way or another. I will need help in not feeling judged for my decisions.

Yesterday I sat down with a cup of tea and a cookie. I thought and thought about these things and all I could come up with, as I finished the last crumbs, was that I needed another cookie.