Thoughts I Didn’t Plan on Thinking

Today we are in my brother’s truck having a rare family road trip. It’s a change for me not to be driving. It leaves me free to look out the window at the gray, somewhat foggy fall day. The leaves are turning but the colors are muted and dull. There is still a lot of green out there so maybe we’ll have a better autumn brilliance in a few more days.

We are going to Eau Claire, a small city two hours away, to visit Chippewa Valley Eye Clinic. An ophthalmologist/plastic surgeon has been working on Mom’s right eyelid after removing a small basal cell carcinoma. This is our fourth visit due to complications of the surgery and repair. Mom has been struggling with ointments, painful eyes, poor vision and a sense of being really tired of this whole process. We don’t know what to anticipate today.

We have so many medical options for anything that goes wrong with our bodies these days. And things do go wrong sooner or later – that is a given. There are many decisions to be made because of this, some we make for ourselves and some others make for us. Swirling all around these calls for decision are issues like the value of life, quality of life, the comparison of one life over another, our views of death and suffering and medical accountability. It’s deep water and not fun to navigate.

This week I was sitting in my husband’s hospital room as he slept. In the common room where I could see and hear them, a family was sitting with their youngish looking son who had obviously been in an accident of some kind resulting in brain trauma. Like my husband, he was there for intense rehab and he was showing good improvement. I had a moment of guilt as I compared him to my elderly husband, with numerous comorbidities, struggling to show progress at all who was taking up a valuable bed in the facility. I felt sorry for the doctor who had to decide to move my husband out to a nursing home for rehab, and I understood what she had to consider. Because we’re having trouble finding another suitable place, he is still here at Miller Dwan in that bed.

My husband spends time thinking about what purpose God could have for him that he was allowed to survive this stroke. He is so tired, and to look at him on some days, you might think he was half dead already. I think he looks half dead, which makes me get busy waking him up, shaving the stubble, sitting him up and telling him to open his eyes before the next therapist arrives. I want him to look valuable, hopeful, worthy of the time and effort they are putting into his rehabilitation. He has indicated he wants that and I am his advocate. It’s a job.

I’ve asked him to think about what he would want if he were to have another stroke. Would he want to go through again what he’s experienced the last two months? He said he hadn’t thought about it. How can that be? He has so much time to think. So many things happen to us because we can’t imagine what we might have to decide, but now he knows and doesn’t have to imagine.

Last week there was an article in the local paper by Garrison Kieller of Prairie Home Companion fame. He also had recently been hospitalized and had experienced many feelings my husband recognized, a lot of mention of bodily functions. He had a good laugh when I read the article to him. Helplessness and dependency is not just happening to Dennis Dietz. And at some point, it could easily happen to any one of us.

I’m thinking about my future, although I know there’s no getting “control” over this realm. It seems to help me to do mental role playing around the possibilities, that way I’m not completely surprised by some of what actually happens. My choices play into my future so I try to make good ones (most of the time) but my best choice has been in believing that God is in control, and that he doesn’t plan on wasting any of my experiences. I can accept that hardship is part of life, and that circumstances can be beyond awful at times. Endurance is needed but there is help along the way in many forms. My belief is that the outcome is good, and it is sure. Just sayin’…

Northwoods Journal: Changes

Hi from a friend’s house in Duluth, Minnesota. She lets me stay in “my room” when I’m too tired to drive home.

Back several weeks ago, in July, we were getting ready for our family reunion, enjoying walks like the one in my last post, and having a great summer. And then the husband had a stroke, a cerebral vascular hemorrhage (CVA). He has survived but our lives have changed, a lot.

Since then, most of what I’ve written has gone in a separate blog, one that tells the story of our experience since his diagnosis of Lewy Body Dementia. I won’t tell it again here, but in summary, we now have first hand knowledge of ICU’s, ventilators, tracheostomies, feeding tubes, and several other things that the husband never wanted to know about.

Hi, I’m the husband. My real name is Dennis and this is Occupational Therapy at Miller Dwan Rehab, the nicest place I ever wanted to get out of.

This is the first day in five weeks that I’ve been home all day. Dennis is in a rehab hospital now, a really good place, and making progress slowly. I felt he would be okay if I didn’t see him every day. The hospital is in Duluth, 90 miles away, and I’ve grown a little weary of the drive. I’m often in the car eating things I shouldn’t eat, just to stay awake – a bag of popcorn can last nearly 70 miles if I don’t spill too much of it.

Although I have wonderful support from friends and family, these changes leave me feeling physically alone quite often. Fortunately, I am spiritually befriended. God is such a friend. Jesus is such a friend. I took a walk this evening, kind of like the one in my last post, on the wetlands trail and saw evidence of my friends. It was almost like things were being pointed out, to look at, to talk about and enjoy. And I took pictures, of course.

All by itself in the middle of a nicely mowed field
She looked and then went on eating.
Sunset coming on.
Like fire in the sky.
Clouds, not mountains, in the east and in the water.

It’s September now. August was surreal, hard, and so different from anything we have known. We have yet to find out what our new normal will be. But it’s coming, and it will be okay.

Giving Care

This week I have not called my mom.  I have not called my daughters. I have not done any writing. I have not done the laundry or cleaned the house. I have hardly been at home.  I started a new caregiver assignment that turned out to be quite challenging.

Even young people can have a hard time when they are weak and sick, but being that way when you are elderly is worse.  It is a pit of helplessness.  My friend Jack is in that pit.  I don’t know if I can help him climb out but I know I can’t just leave him there either.

After spending seven months either in the hospital having surgery, or fighting infections, or getting his diabetes regulated, or in rehab trying to get his strength back – he is finally at home.  He was giddy with excitement when they brought him out to evaluate his home for safety.  It wasn’t that any of the institutions were bad places.  He had just had enough of the routines, of professional friends, of hospital furniture, of TV on the ceiling.  He dreamed of the peace and quiet of home.

In spite of having a nurse manager, an occupational therapist, a physical therapist, a home health aide and me, medical “girl Friday”, this week at home has made Jack realize that he had some very high expectations.  Meals don’t appear magically at home.  Messes don’t clean up by themselves.  There are no helping hands at home every time you feel a little dizzy or off balance.  Home can be a scary place when you are alone, when you fall and can’t get up, when your blood sugar is so low you can’t think straight or have the strength to get out of bed. Help comes and goes, but has often gone when you need it most.

Every day during my time with Jack, we would work on some of the problems he was having, we would have a meal together and then he would nap, pretty much worn out.  My five hour stretches were the longest periods of time that anyone was able to be with him.  Every time I left, I felt a bit guilty, almost afraid of what I’d find when I returned.  I got the impression that he was anxious too, wondering how he would get by.

So, I’ve gotten a chance to watch Jack suffer, mentally and physically.  He has had to give up every shred of dignity as we women do things for him that he would much rather do for himself. But I have yet to hear a word of complaint, or even of anger really,  Somewhere along his life path, Jack has learned to suffer well.  As I watch, I think how valuable an example that is.  We all will suffer something, sometime, and have to decide how to view that suffering, how to act when we are in the middle of it.  Can we learn and grow from it or is it a waste of time?

I found  a caregiver who will stay the night with Jack, starting tonight.  As he was meeting her he seemed more hopeful, stronger, more able to talk.  Maybe he will work through this hard time and gain his independence once again.  At the very least, I think he will get a good night’s rest.  I will also rest better tonight.

Have you learned something valuable from a time of suffering in your life? or from watching someone else suffer well?