My mother, was a sweet, beautiful woman, an accomplished watercolorist and pianist, talented in many ways, until one day she laid down her half-finished sketch, slipped into dementia and I fell backwards into becoming her sole caregiver. She was 90. She couldn’t live alone, and there was no one else but me. That was a decade ago.
I felt the floor of my chest open and my heart plunge into my stomach. My lifestyle and the self I knew ceased to exist thenceforth.
I know now I was not the only one in this situation. No matter how much help you may have, when you’re in the middle of it, you are alone. You can call your friends and complain only so many times. And besides, nobody wants to hear it. So, on the suggestion of a hospice volunteer, I began writing a blog.
To my delight, I found my blog writing cathartic, whether or not anybody read it. But they did. Caregivers who have read my stories say, “Oh, thank goodness I’m sane after all.” We caregivers all share the same experiences. The particulars may differ based on the individual’s life experiences, but the fundamentals correspond.
It’s important that you, the caregiver, share your story, get it out – through blogging or journaling, or to a caregivers group or healthcare support team member trained to listen — patiently. Don’t let it churn around and bore deep inside you. Caregivers forget to take care of themselves. Plus, once I told my story, I could laugh; I could laugh about the time my mother, afraid of falling, grabbed hold of the candelabra, lifting them off the credenza, or the time she declared to me, “I’ll have you fired!”
With the best intentions, yet I would want to ask, “Are you doing this on purpose?” Well, of course she is. Why else would this be happening? I soon learned that she couldn’t help it; her mind was deteriorating; her condition would only worsen, her brittle and crumbling synapses taking longer and longer to toss the message across the void, a forest brook, as it were, so the one on the far side can catch it; or perhaps the forest is empty – no birds singing their messages, no nerve impulses, no neurotransmitters released, the synapses have disintegrated. I cannot reach her.
Often, even with the best intentions, you will become frustrated and angry with the person for whom you are caring. It is normal.
I learned to ask for help. I learned to have patience as best I could. I had meltdowns. I didn’t know what to do, but did something. I learned to let go and, mystically, help would come. I became a connoisseur of inexpensive red wines. I learned to become The Lion at the Gate: It was my house, my mother, and it wasn’t about the certified nursing assistants who wanted to use five washcloths for one bathing or to text their friends while on duty. I told some to leave and never return. It was about my mother’s dignity and respect, and the way she would have wanted things.
And it was about beneficially channeling my expression and needs — in writing and finally, in the last years, to our invaluable hospice team of extraordinary human beings.
Tell what happened, how you feel, what you need, straightforwardly. Employ your local senior center resources, too. My mother died peacefully two years ago. She was 97. Last year our hospice nurse wrote a note on her Christmas card to me: “I am so glad to know you.”
Samantha Mozart is a newspaper and magazine feature stories writer, essayist, editor, award-winning poet and writing coach. She writes a blog, “The Scheherazade Chronicles” (http://thescheherazadechronicles.org), and gives presentations to senior centers and caregivers groups. Ms. Mozart has published two books: “Begins the Night Music: A Dementia Caregiver’s Journal, Volume I” and “To What Green Altar: A Dementia Caregiver’s Journal, Volume II.”
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