Hello …


“… 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––

 

––Samantha

*Emma turned 97 on September 12, 2011

P.S.—

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.

SM

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    • Charlotte,

      Thank you for your compliments. Thank your friend for recommending my site. I appreciate it. But, if you are German, why are you commenting in French on a blog written in English?

      –Samantha

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  326. I enjoyed getting in touch with you this morning after many moons Carol. I forgot to mention my step-father Bill passed away from Alshiemers in January after a very brief stay in a rest home for a few months. These conditions are quite stressful and I wish you the best in dealing with you mon and her condition. Let’s stay in touch and meet up someday back in good old California when the time is right.

    • I am very sorry to hear about your stepfather, Frank. At least he is at peace. I can’t imagine how difficult it must be for the sufferer — and I hope I never have to personally find out. I’m so glad you called. It was great talking to you this morning. Yes, by all means, let’s do meet up in California one day in the not too distant future.
      –Samantha

  327. Samantha Mozart,

    I too, am a caregiver. I watch over a young man who is soon to be 70. I’m 42. I’ve known him for 23 years and he’s a good friend. I moved him into my house a few years ago. I know the strains and stresses of caring for someone, but not to the degree you experience.

    When i refer to him as young, it’s because his body is still vital and healthy, his mental acuity is sharp, and he has a young personality. Problem is, it was unknown he was diabetic. When I urged him to see a doctor due to a foot wound that would not heal, it was then discovered he was (is) diabetic, but the damage had already set. He’s now near blind, and has lost nearly all sensation in his lower extremities. This depresses him as you can imagine. I don’t view him as an old, run down, aged person, rather, I view him as injured during a young time in his life.

    In summary, I provide much assistance to my friend Ron. And it’s an hour by hour task, coupled with the delicate effort to keep his spirit up. I care for him dearly, and I’m glad I am able to be useful to him. I wouldn’t have it any other way.

    Samantha, our roles in life are admirable. We are both doing the right thing, and we’re both better people because of it.

    Hang in there :)

    Kevin

    • Wow, Kevin. Yes, you are admirable. Your task is daunting, I am sure. Ron is most fortunate to have a friend like you, especially one so wise as you at your young age (younger than Ron’s and my young age) to see the need, to fulfill it and to be such a caring friend. Those of us who have such caring friends in life are very fortunate indeed. I count you among those friends. Hang in there, too.
      –Samantha

  328. Beautiful photo.
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    Thank you for sharing, Samantha.
    You are a gift to Emma, and to others,

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  330. Paula Giordano

    Beautifully written Carol.

    My grandmother, Sophie, had dementia. She lived in a wall of silence for the last 4 of her 104 years. She had outlive all 9 of her children, with the exception of my mother, who passed away less than a year after my grandmother’s death.

    I would go visit my grandmother (not often enough) in that home in Jersey City, run by kind nuns. I’d hold her hand with it’s crepe like skin and wonder if there would be anyone there for me when I get old.

    Sophie could be funny. In her early stages, she liked to sit by a window and watch to world pass back and forth down below. I guess as a form of physical therapy, the nuns would toss a beach ball around. Whenever they threw it to Sophie, she would catch it and then toss it out the window. Her wordless protest.

    Apparently they had an endless supply of beach balls, because rather than put a screen in the window, they kept tossing them to her.

    The children below were delighted.

    • Thank you, Paula. This is a delightful and touching story about Sophie. Poignant as these stories are, there’s always some humor. I am hoping to evoke more of these memories from readers that we can all share.
      Yes, I wonder, too, who will be here in my old age.
      –Samantha