Nancy Nicholson

Today’s poignant blog post is written by Nancy Nicholson, LBSW, author of Help! What Do I Do Now? Caring for Your Loved One with Alzheimer’s. She writes about Alzheimer’s and caregiving on her website: http://nancynicholson.net. Nancy shares with us part of why she wrote the book.

Making Invisible Alzheimer’s Patients Visible

Our friends had stopped by to visit. We didn’t get much company living out on the ranch anyway, but since Dad’s Alzheimer’s disease (AD) diagnosis, visits were even fewer. The guests, who lived only about a mile away, had been friends and co-workers for more than a quarter of a century—she had worked with Mom and he had worked with Dad. Mom welcomed them in, and we all took seats in the living room. There were the “how are you doing?” and “long time no see” exchanges. Then an uncomfortable silence set in. The couple sat facing Mom and me, and the few words they spoke were directed to us. They did not address Dad directly and appeared uneasy and never tried to include him in the conversation. Their visit was short, and, honestly, I believe very uncomfortable for everyone. Dad had seemed excited about the prospect of visitors, but as they drove away, he turned and walked back to the bedroom with shoulders slumped.

This is just one of many experiences that had a profound effect on me while caring for Dad. I was angry at his so-called friends for basically ignoring him. He was still a person and could still participate in conversations even if he was slow to answer or occasionally misunderstood what was said. I had thought that a visit from old friends would be good for him, but at the end, he seemed sad. I could only imagine what he was thinking.

Through the seven years we cared for Dad with this devastating disease, it seemed that often he was invisible to other people. He was treated as if he wasn’t a person, as if he had no value, as if he wasn’t even there anymore. During that time, I resolved that I would make it my vocation to help make life easier for those afflicted with the disease and to help other people to see AD-afflicted patients as human beings with emotions and value. I went on to get my degree in social work and worked in long term care facilities as a social worker. Currently I am a social services consultant to nursing homes. Training staff members is one of my primary duties, and I especially enjoy training people about caring for dementia patients. I want to make them understand that someone with AD is still a person with feelings and a need to be included.

I also see a lack of knowledge among caregivers. Almost everything my family and I learned about caring for Dad came through trial and error. I’ve seen so many “errors” made by well-intentioned, caring family members who simply don’t know how to deal with their loved one. The relationship has totally changed, and they may feel the patient is no longer the person they know and love. That’s why I wrote Help! What Do I Do Now? Caring for Your Loved One with Alzheimer’s. It’s a short guide with lots of examples and tips for specific situations. Most of all, though, I want to encourage family members to continue to relate to their loved one, to remember he is still the same person inside even if the disease has camouflaged that person, and to make the best of the journey they are on together.

Click here to order Help! What Do I Do Now? Caring for Your Loved One with Alzheimer’s from Amazon (print and Kindle) or here to order from Smashwords (ebook format). Bulk orders: support groups or families who need 10 or more copies can order at a discount; click here.

Nancy is also the sister of editor and writer, Lillie Ammann, who writes http://lillieammann.com/blog, and was last cited in this blog here.

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