A New Chapter Begins | Ending Caregiving Duties
A New Chapter Begins | Ending Caregiving Duties
It’s a strange and quiet new world since my mother passed from this life in the early morning hours of Jan. 28. I can hardly believe I’m writing this. I thought I was prepared for the day, but how could I have been? I don’t think anybody is. The images from that final 24 hours, during which we said our goodbyes by telling Mom how much we loved her and that everything would be okay, are indelibly etched in my memory. Maybe seared is a better word. I’m gathering photos of Mom to be put in a book to be titled, “A Beautiful Soul,” and she is indeed that lovely soul and spirit I sense in the house, and everywhere, really. I see her on the sofa, the porch, in her bedroom. I think of her when I’m in the car doing errands. When I come in the door, particularly, and look at the sofa in the den, she’s not here in her accustomed spot. Sometimes I can hardly bear the flashbacks of those last couple of days.
Life has a kind of unreal quality now in that I have no more 24/7 caregiving responsibilities. Mom was released from her many years of suffering with dementia, and for that I am so grateful. She is free and at peace with God and those she loved. I am still here, still tethered to this world that seems to be falling apart. I feel greatly anguished about the state of our politics and the fate of the planet as global warming and climate change put all of “civilization” at risk. The fears I had in my youth in the 60s and 70s about pollution and over-population are coming true more quickly than I would have ever believed. All this anger and dread about what we’ve become as a nation had been neatly sublimated into its own box or category while I focused foremost on taking care of Mom. Yes, I kept up with all the news and read endless articles and commentary, but now it’s all up front and there’s no escaping it.
I have a lot more time during the day and at night to think about and ponder all these things, free of the anxiety and stress of always being “on call.” For years my life revolved around the schedules of caregivers who came and went and who enabled me to continue working until June 2017, and also to have what little bit of freedom I had.
It never once seriously occurred to me that caring for Mom at home was not the right thing to do. I knew it would require continuous sacrifice, but over the years of giving myself to Mom (from 2009 until Mom passed) I recognized unequivocally and early on that I could do no less. It was a very slow evolution as I began gradually taking over all her responsibilities. I remember when she could no longer fix her own meals or pay her bills or give herself her daily insulin injection. This occurred mostly after around 2005. I remember when she got her new Honda Civic in 2003. She hardly drove it at all. It’s now my main vehicle.
Grief, or what I think of as grief, hasn’t hit me yet. I have no idea what shape or form it will take. I do know that right now it comes in very brief, intense bursts when I see something in the house that reminds me of Mom. It’s the same way with my sister, who is here from Edmonds, WA, helping me tend to a million things. Both of us are rather compulsive and not prone to put off things that have to be done. I also really have to think about where I want to live after we sell the house. Despite the fact that I’ve lived here and been deeply acquainted with this beautiful, antiques-filled home, it’s never felt like “my” place or home. It was always Mom’s place, even though I took over the upstairs and have perhaps 2,000 books up there to surround and immerse myself it. Those books are a comfortable buffer to the outside world. They helped me cope with the tribulations of dementia. As Simon and Garfunkel wrote, “I have my books and my poetry to protect me.”
Rents and housing costs are astronomical now in Charleston. I really can’t afford to keep living here. Also, after three years in a row of mandatory hurricane evacuation orders, I really don’t want to go through that anymore. Imagine if you will every August and September worrying about whether everything you own and the place you love will be literally blown off of he map by a Category 5 hurricane such as Dorian, which devastated part of the Bahamas last year before heading north and veering away from us at the last minute, as predicted by the forecasts. Thank God! I had nowhere to take Mom during that evacuation, so we stayed here and prayed. That is no way to live. Granted, in the future I’ll easily be able to evacuate myself, but that’s little consolation considering what I might have to return to.
As much as I’ve come to dearly love the parks and gardens here that I frequently visit, and which were saving sanctuaries for me during the time I was caring for Mom, I feel the need to begin the rest of my life some place else. I’m not sure that will be the right decision because I do love it here and the whole area has become “home” as no other place has been before. I also am starting to cultivate new friends. However, it might be the best thing I could do in terms of closure and moving on from my loss. Time will tell.
My life is so much different from people with spouses, partners, children and grandchildren. It’s good for them to be permanently tied to a place they call home as the end of life nears. I thought I would feel that way, but now that Mom is gone, I am remembering and reverting back to the way I was prior to 1994 when my life became so intertwined with that of my mother’s. She moved here from New Orleans in that year. She was 71 and I was suffering from a deep state of depression which she endured with me as she took care of me, cooked my meals when I didn’t want to eat, begged me to take medication, and gave me a place to live when I was seemingly at rock bottom. In December of 1994 I miraculously got the job which was perfect for me and which basically saved my life. At that point I could barely even get out of bed.
In the years that followed, my mother’s plans for happy and healthy final years in Charleston were upended when she suddenly developed severe, late-onset diabetes at 75. I am convinced that this dreadful disease contributed to her dementia, so that ten years later she was becoming more and more dependent on me, even though she still lived by herself in her own home, took long walks, had some friends, and fixed her own meals. This seems impossibly long ago to me now. That all ended by the early part of 2010 when it became obvious she could not stay by herself. I moved out of my apartment where I had lived for 15 years and into her house. I didn’t want to, of course, but there was no looking back, no regrets — it had to be done. From that time on my caregiving duties for my mother only increased. Dementia was gradually robbing my brother, sister and I of the vibrant, caring mother we loved so dearly. It would fall to me, the eldest son, to stay the course with her, doing everything in my power to care for her and to keep her comfortable in her beautiful home. In that I succeeded and am grateful beyond measure, even as it daily took a toll on me. Now I find that every minute of every day is filled, and that time is literally passing so quickly that I can’t, and don’t, even want to think how few years may be left. Each day is more precious than ever.
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