“… the gap between compassion and surrender is love’s darkest, deepest region.”
–Orhan Pamuk, The Museum of Innocence
Introduction and Prologue
You will know us as Samantha Mozart and my mother Emma. These are not our real names. I choose these to preserve our privacy and my mother’s dignity.
Emma has dementia. I am her sole caregiver. Emma has led a good and long life. She is 96*. She was once a great beauty; involved in modeling; small, petite and feminine; prettier than most. She was detail oriented and an artist, became a watercolorist after she retired from her secretarial job. Guests entering our home say it looks like an art gallery; her paintings hang on the walls in every room.
Emma played this piano caprice all her life, until about six months ago when she sat down at the keyboard, read the music, played it very slowly, and said, “I’m not doing it justice.” Watch the YouTube video of J. J. Sheridan playing it.
It is not easy for me to write about someone and something so close and personal. Aides and friends have suggested to me that I do this, though, hoping that my experiences will help others; and – just possibly – disperse the dross of events I daily dump on them. I am lucky to have such good listeners.
Emma no longer listens. Most often she no longer or barely reacts to me or others. I would place her in the latter intermediate stage of dementia. How does dementia differ from Alzheimer’s? I don’t know. I do know that Emma’s doctors have diagnosed her with dementia, and her condition began as dementia – forgetting simple things – while she still remembers people’s names when I talk about them, when she can hear me – she’s hard of hearing, too –, and who most of them are when she sees them. Me, I sometimes think she would rather not see, so she has told me on occasion: “I’ll have you fired!” One could only hope. Kidding. More on that later.
Meanwhile, welcome. If you know someone with dementia or are a caregiver, or are just interested, come along with us on our journey. At the least, we can support each other, and maybe glean new insights, as well, into this dreadful disease, even if we can’t cure it. My experience has been, and experts concur, that while the symptoms of the disease present a theme common among all patients, there are variations on that theme, specific to the personal life experience of the individual, says Emma’s doctor, the handsome Dr. Patel. (Oh, wait … Dr. Patel is my daughter’s age, likely younger. How did I get this old? This old, 69, does not make it any easier to be a caregiver – 49 would be a more facile age.)
Caregiver support groups exist, but many caregivers don’t get out, especially if you’re the SOLE caregiver, because, whatever happened to the rest of your family…? Example – Delia Ephron’s book Hanging Up, the movie produced by Nora Ephron, directed by Diane Keaton, starring Meg Ryan, Diane Keaton, Lisa Kudrow, and poignantly, Walter Matthau in his final performance, as the aging and ill parent of three sisters.
Now it is even harder to get out. My car died recently. It was old. I sold it for parts. So now I don’t have a car. I have to save my money to buy another one. I have Hospice volunteers and great friends, fortunately, who drive me to the store and other places, but it takes brilliant logistics to coordinate my schedule with theirs, especially when a home health aide doesn’t show up. Therefore, I have to make sure all my supplies are well stocked, and be ready to jump when help is available.
If you are interested in how all this began, you will find our progressive history, chapter by chapter, under Journal in the top menu bar.
Persons with dementia are like two-year-olds who, if not watched, will get themselves into trouble – quickly. As sole caregiver, as you who are know, when your loved one makes a sudden, unexpected move, there are the impromptu interruptions––
*Emma turned 97 on September 12, 2011
If you are new to my blog, welcome. I am so glad for your visit. You should know that Emma passed away April 11, 2012. I miss her very much – her intelligence, her sweetness, her charm and humor, the detail to which she gave her many talents; but she is released from her long suffering, a suffering no one should have to endure. Her release is the good news. She was 97; she lived a very long life, adapting to and embracing the many changes, technological and personal, that she encountered during her century of life.
If you are interested in following our odyssey through dementia, you are at liberty to explore my blog, chapter by chapter, or more facilely you can buy my book, Begins the Night Music: A Dementia Caregiver’s Journal, Volume I. Just click on the icon in the left sidebar here.