All week I’ve found myself tearing up as I drive past the road that leads to the nursing home where my mother lived. I pass the road to Hospice House, where she died December 31, 2011, far more often and rarely think of it. Yet each time I pass the road to where she lived, my eyes burn and my thoughts swirl. It’s incredible to believe that one year ago, 365 days, we were celebrating her 68th birthday. I wrote the post Ode To Birthdays Missed last year, as I struggled with the progression of her Huntington’s Disease and the inequities I saw in her life and my life with her. When I wrote that post, I had no idea that two weeks later she would fall and break her elbow, end up in hospice and die two+ months later. A broken elbow was not how I imagined it would go. One year ago, I was frustrated by her inability to do things the way I wanted. I was tired of her needs and her disabilities. I knew I should appreciate her hugs, but I didn’t always. I was sure she would be around for a year or two more at least… and frankly, couldn’t imagine it really ending. One year ago, everything felt different.
Today as I face Mom’s birthday without her, I would give anything to see her dress in one of those crappy outfits she loved and take her to dinner. If I knew then, what I know now: that it would all end and I’d miss all the things that bugged me so much 365 days ago, I would linger longer and listen to her silence. I would be more patient as she struggled with the seat belt or tried to read the menu. I’d wait to order dinner, and be more grateful for the opportunity to be with her. One year ago, fall was edging in as it is now and I was annoyed by the expectation that I must spend time with Mom, that I should be at a nursing home on a nice afternoon, or make time to bring her over for dinner when I had three busy high school students to take care of. One year ago, China and Denmark had just arrived, and I found myself explaining my mother’s appearance to them, helping them feel comfortable with her and her condition, when I could barely stand it some days myself.
One year later, 365 days: There are so many things I regret. There are so many blessings I count. When I re-read the post Ode To Birthdays Missed, I read it with the hindsight I knew would come after. I had no idea then, that it would come so quickly. A year ago, I was too busy resenting all the time I had to spend helping Mom. I was too busy feeling guilty for all the times I didn’t spend with her, or the times I spent resenting. I knew this would come, but it was impossible, in the moment, to stop and remember that. We had fallen into a predictable struggle, my mother and I. We had our good days, but many days were a familiar routine of me pushing her buttons and her pushing mine. Her coordination may have been shot, but she could still push a button! I tried, so often, to put my shit aside and be present with her. And many times I was. There were times that I took her for her pedicure, or shopping for new clothes… clothes that she would never wear, because she fell and never got dressed properly again. I took her to look at the foliage, just days before that last fall, when I knew she was feeling down: frustrated with her failing body, frustrated with her lack of freedom. We drove around the lake and watched the season changing. She loved autumn. She loved to go for drives. It felt good that we were able to enjoy that drive, without the usual tension and expectations, and just enjoy the beauty and moment instead.
One year ago, I didn’t get her any real birthday presents because I had just taken her shopping and she didn’t need anything else. She had lost her appreciation for fine things; she had lost her desire for a lot of things that she once liked. I brought her flowers, something she loved, and we took her out to dinner, the other thing she still loved. The restaurant was loud but she liked it there. The waiter knew her a little and was always kind to her, always respectful. That night he bought her a second drink for her birthday, after I said two drinks were not a good idea (always worried about falls). She raised the glass and smiled at us all as she drank that second cocktail. “Happy Birthday dear,” the waiter said to her, and I knew she felt normal for a few minutes. She didn’t notice that he said “dear,” or that he probably thought she was older than she was. Mom was grateful for his playful flirtation, and she was happy to have a drink and forget a little. As much as I worried about her falls, in the end I truly understood that part. Trapped in a body that failed her on the most basic of levels, and stumbling around in a mind that vacillated between sharp, fuzzy and full-blown dementia, depending on the day and time, Mom had every reason to want to escape.
One year ago I already understood that I would face a lot of mixed emotions in her passing, but I absolutely believed that I had at least 365 days more before I’d have to face that. The greatest injustice in a slow decline is the miscalculations that come. The end always seems near, but not here. Though I frequently thought that death would be a blessing for her, I did not anticipate it anytime soon. We all felt sure, at the time, that we had a few more years of struggle ahead. The decline felt endless, so an end remained nebulous. We all wished for it at one time or another. The agony of watching her deteriorate was often too much to bear, and we each had moments when we wished for the suffering to end. Her suffering and ours. We each struggled with our own demons as we watched her lose pieces of herself. I knew that all of the issues that she and I had left unresolved were still simmering somewhere below the surface… for both of us. I was not caught unprepared; I’d told myself countless times that the end would bring it all to the surface. However, I didn’t fully understand that all of the clichés of grief might be true for me as well. In the end, I was merely throwing punches in the air. I was fighting old battles that truly didn’t matter anymore. I would never resolve things the way I might have wanted, for so long. As I sat alone with her in the Hospice room on December 31st 2011, and watched her draw her last breaths, I felt so many of the things that I’d felt bound to for so long, just dissipate as she left me. It hadn’t occurred to me that the battle might end that easily.
In the 365 days since her last birthday, since that other post, I have had so many kind and thoughtful people reach out to me. I have had so many of you say that you’ve struggled with the same issues, similar losses. I have come to know that many of the people I smile at and pass have parents with dementia, parents who need care. I see that so differently now and feel such compassion for a path that can be so similar and yet entirely different for each of us. I have been blessed with a lot of support and a lot of kindness. I am grateful for each one, and all the more for how unexpected some of them were. In the 365 days since Mom’s last birthday I have gained a much broader understanding and acceptance of things between us. I have come to miss her much more than I anticipated, but the letting go of so many things has made for lightness I never foresaw. What a difference a year makes. 365: It’s not just a number. Happy Birthday Mom.
Are your parents still alive? Do you appreciate them, do you struggle with carrying for them, or are you still working through issues that seem to never end? Share your thoughts in the comment section; I’d love to hear from you. Take a moment and hit the Like button if you enjoyed this piece.