My mother died four years ago. Every morning I wake up, and without thinking I put on her robe. Of all the precious things she gave me; a sense of humor, a love of Mondays, her favorite ring and her golf shoes, it is her robe I love the most. It is soft, pink, and what was. It has a hole in the pocket where she stuffed her Kleenex. It is the robe she drank her coffee in each morning, and now without fail, I do the same.
As her beautiful mind diminished and her frail body followed its lead, she wore this robe. As the things that once held importance for her became less important; talking, reading, cooking, driving, traveling, shopping, and even lipstick, she wore this robe. She wore it on the good days and she wore it on the bad days.
Looking back at the early stages of her illness I am reminded of the subtle messages she was giving us as the dementia nestled in her brain. Shopping, one of her favorite outings, we went regularly as she would say with delight, “let’s go buy something cute!” One day as we entered the doors of the frequently visited department store she questioned, “everything looks different, I think they have remodeled?” Days later she called to ask me, “do you ever just look in the cupboard and everything looks different?” The answer to both of these questions was a resigned no. The question as perplexing to her as it was to me.
During the early descent to the hiatus of her memory my mother still had awareness, and by extension, shame of her little foibles. She became quite clever at the resultant cover-ups. How many times she endured the in-turn shaming comment “mom, I told you that” by saying, “oh that’s right you told me that.”
One day, while playing her favorite game of golf, I watched in astonishment as she teed off the same mat she had teed off of countless times before, only this time, 90 degrees in the wrong direction. The golf ball seemed intentionally sent into the apple orchard, as opposed to the fairway. She was embarrassed.
When the brain scan revealed atrophy and a likely diagnosis of Alzheimer’s disease I heard her say for the first time in her life. “I am scared.” Soon there were gaps in our daily conversations. As those gaps widened the depth of our conversations narrowed and soon we didn’t talk by phone at all.
There were other signs of her decline. Mom reflexively read and re-read the same book. Her signature colorful and sassy clothes were replaced by a go-to beige wool coat. It was as if her brain were somehow matching the messages she was sending in her wardrobe.
Knitting, once a favorite pastime, she knit over a hundred wool scarves, hanging onto the well worn directions that would tell her how many rows she needed to finish her project. As time wore on her pace was slowed by the need to constantly measure her progress. Every five minutes the retractable measuring tape provided the same answer. Before long, she put her knitting needles aside too.
Dementia is a tricky thief. Like Swiss cheese, on good days, she held up the cheese and saw me through the hole. On those days we remembered our life together. Our family vacations to the San Juan Islands and the record shop she owned in the 50’s. On other days she saw the cheese. The cheese was reflected in her now pin-point pupils and ever present blue eyes. It was on these days she involuted; quiet, sullen, bored and vacant.
If I could take anything back it would be the “mom, I told you that” comments. I think more perceptively I would have said, “Mom, I am sorry you don’t remember.” I wonder how my own super-charged-fear fueled those comments. My fear of losing her slowly, painfully, and in front of me.
My mother died on November 2, 2010 with her family by her side. I am not sure that I can assign the words, “Died in peace” to her exit, or to our experience of bidding her farewell. I can say she loved her life, and going on without us was not easy for her. I do take comfort in the fact she told me earlier in the day, “My sister is coming to get me.”
My grief is not the grief of missed opportunity or the grief of searing pain that comes in waves. My grief is like the robe, soft and pink and a little tattered. It is the place that I find her and the place that I lost her. I will continue to wear the robe and like a child with his favorite blanket, will likely need to cut it down to size, until it fits nicely in my purse. For like her, it will go with me, for as long as I remember.
Contributed by Michelle Frost, Resiliency Coach, Writer, Cancer Mom, Palliative and End of Life Care Consultant. Through her work, as well as her personal experience as a Cancer Mom and as the daughter of parents, both of whom had Alzheimer’s disease, Michelle shares her perspective. You can read more on her blog.