By Susan Soesbe
When Mom was in her seventies, the idea that she had dementia sort of came and went, like back pain. My suspicions would flare up when she did something out of character, like purchase an expensive juicer, though she had not one shred of interest in healthy eating. But then, she was still able to drive, email, and play Rummikub, a math game.
However, the dementia eventually became obvious. My sister and I convinced Mom to move to an assisted living facility, and then to a memory care unit. Even there, she was constantly in danger of falling. We were able to move her home to live with our two families. Hence, the title of my book.
I started to write then so I could share the knowledge I was gaining. I had thought Alzheimer’s Disease was just memory loss. Now I was learning it involved a loss of executive function, personality changes, hallucinations, and loss of bladder and bowel control. If I had known this before, I thought, I would have shown more concern for caregivers. I would have been better prepared myself.
I knew my story would benefit others, but how could I make it readable?
The recently-launched online publishing platform Medium challenged writers to craft “stories.” So I started to work on little scenes describing what was happening under our amazingly large roof. I later assembled these stories and expanded on them to make a full-length memoir.
This technique seems to have worked. Readers have told me Bringing Mom Home is “a page turner.” They thank me for expressing the real-life difficulties of caregiving, and the mixed feelings they have toward their parent or spouse. I’ve given them permission to admit they don’t always feel loving, that they’re sometimes angry, resentful and hurt. They seem relieved to read that someone else has blown it, failed to really love a loved one, and experienced ambivalence.
Not everybody caring for a person with dementia has always agreed with their loved one. But now they can’t have discussions anymore. They can’t disagree or express disapproval. A person with Alzheimer’s Disease is incapable of changing. For example, my mother was prejudiced against people of color. Dementia made her lose her filter. Sometimes she made hurtful remarks, so I learned to ignore and redirect, and to apologize for her. That’s another thing you don’t know till you’ve experienced it yourself.
Readers have told me they appreciate the book’s eternal perspective. I’m a Christian, and sort of a Bible nerd. The beliefs I express in the story are 100% my own, and they deeply informed my approach to caring for Mom. God answered my prayers specifically and, perhaps more importantly, changed my heart. I had been in the habit of judging my mother, holding her at arm’s length, and hoping my good deeds would take the place of the love I didn't really feel. God helped me eventually to love her from my heart. I want caregivers to hope that good can come even in their difficulties. I want them to see their lives in light of eternity, because the day-to-day is so hard.
Short Bio:
Susan Soesbe grew up all over the US, as her father's military career took the family from North Carolina to California, to Missouri and back to California again. Mr. Flower, her sixth grade teacher, stoked the creative fire in the entire class using "ten minutes of talking," improvs, and blank books in which students were encouraged to write stories whenever they felt like it.
Susan writes from a Christian perspective and is interested in seeing how the Bible connects to all areas of life. She is based in New Jersey and Pennsylvania and is pursuing a career as a teacher of English to speakers of other languages.
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