Most every year, during the month of December, I carry two planners around with me. One is for the present year, and one is for the year to come because I am often planning ahead. That’s what planners are for. The last day of December often finds me closing out one and looking back over the fading year. I am doing that today.
The first half of the year was filled with quiet routine. The husband was housebound except for a few rides in the car and a restaurant meal now and then. We had a regular habit of reading in the mornings and sharing thoughts on what we’d read. Evenings often included him getting a wheelchair ride around the community.
I enjoyed the seasons – skiing in the winter, gardening in the spring and, most of all, planning for our August family reunion.
While family was arriving in late July, the husband had a stroke. Before that time I often wondered how his diagnosis of Lewy Body dementia would play out. He was obviously experiencing symptom progression but so slowly. I thought he was dependent on me in some ways, but little did I realize that being able to walk at all, and being able to eat are very independent activities. He was still doing those things at will, and amusing himself during the day with tv, phone calls, and books.
The stroke took all of that away. What followed was 25 days in ICU, 5 days in a step down unit, 49 days in acute care rehab hospital, 26 days in skilled care rehab, and 24 days in a nursing home. I’ve been sitting here with my planner counting up the days and marking the events. Most of these places were 90 minutes away from home. The last was only half an hour away. I’ve put thousands of miles on the car. I was weary of traveling and welcomed bringing him home. This is his 29th day at home, the 17th day under hospice care.
I am the primary caregiver, although we do have around 15 hours of care each week from CNAs hired privately. That is the summary of the second half of 2022 for the husband and me. It’s been a year to remember.
I can’t say that I have felt like writing much during this time. Occasionally it has been an emotional release. I might also like to have record of what we have gone through, at some later date when memory fails me. But much of it I would like to forget. Ten years ago I would not have imagined living the life I have now.
Should I say something about God and his part in the road we’re on? I see him as having been very patient and understanding of my fatigue, my not want to think deeply, or pray consistently, or immerse myself in scripture every day. In some ways I am numb to those disciplines in much the same way as a young mother with a house full of toddlers. God sees what overwhelms his humans. He sends me out on a “walk and talk” and I will tell you that the natural world has been my lifeline this year.
He sits with me when I cry. He gives me words for the husband when calming and encouragement is needed. When action is called for he has given me the thought of what must be done and the energy to do it. He has given me assurance about all the confusing and uncertain things – that I can trust him and decide not to fear, not to blame.
Many friends have said they are praying for us, and have reminded me of that often. That has weight with me. This is not the first time that prayer has been important to me, but still it is a mystery how God uses it. I want to be involved in that mystery, not necessarily to understand it, but just to have a part in it. Somehow God attaches great power to prayer and I love to see him be powerful , up close and personal.
I think it was good that we asked God for healing for Dennis. Why would we not? But it is also okay that he has not been healed because perfect health is not the only blessing God can bring with a hard experience. And we have always known that we will die at some time – it’s just the end part of being human. We will not waste the experience by becoming bitter or turning away from the most exciting relationship humanity has ever been offered. No, neither Dennis nor I feel any disappointment with God, or the way he has exhibited his friendship with us.
He has been “with” us. Sometimes he has been a peaceful presence on my walks. Sometimes he has sent others to us to spend time or offer help. I’m often told that I’m not alone and have felt like saying “Well, I feel pretty alone in spite of what you say.” But now I receive that differently. God puts that sentiment on the lips of others to remind me that he is with me, even when people are not. That’s enough. He is not named “Immanuel” for no reason.