When my mom was diagnosed with Alzheimer’s disease several years ago, I really had no idea how it would manifest itself. Having provided caregivers, nurses and resources to our clients at Help Unlimited for more than 20 years, I thought it would be easy, given my experiences and my training, to relate to my mom and to help my dad cope with her and her changing mental abilities.
Boy, was I wrong. I minimized the emotional component of communicating and working with someone with Alzheimer’s. The tips and the tricks one is taught in dementia-related classes and seminars were overshadowed by the personal relationships and the patterns of communication that have been established between mother and daughter for years. My father’s lifelong habit of acquiescing to my mother resulted in decisions being made not out of rational decision making, but out of an effort to keep my mother happy.
One of the first things you’re taught when working with Alzheimer’s is not to try to reason with the affected person. In the early stages of my mother’s disease, I would try to reason with her when she would say something not based in reality. It felt somehow disrespectful not to try to bring her around to my reality. As she became defensive and argumentative and I became frustrated, my reality assumed less importance.
I have learned that it is much easier to enter her reality and be a part of her life that way than to try to convince her to accept my reality. And frankly, my mom’s reality can be much more interesting than anything I can remember from the past.
My mom saves things — obsessively. At restaurants, my mother will stuff extra crackers, jams and butter patties into her purse. Then she “packs” them. She was mortified after I found the melted butter packed in her shoes.
I have learned the art of subterfuge. I sneak into her purse, her drawers, her closet and remove the melting butter and jams, the stashes of drying rose petals that are molding, the damp dead flowers that are wrapped in her underwear.
At Help Unlimited, we work with clients and their families at all different stages of dementia. Our caregivers and nurses assist in every way possible to ensure a calm and peaceful environment for our clients on a daily basis. And now that the shoe is on the other foot, I see the frustration that can affect family members and the dance that we need to do in order to keep ourselves and our loved one embracing the moment we are in.
I have learned that a white lie, when told with kindness and love, is permissible if it preserves my mother’s dignity.
My mother’s mind blends the experiences she had in life with experiences that my sister and I have had. The result is a life rich in travel, art and education. It is a much more interesting life than any one person would normally have lived. To deny her that history would be cruel and to go down those fictitious memory lanes with her is a much richer experience than the reality of her life’s history.
When I was a child, my mother taught me to be kind, to share and to live by the golden rule. She is teaching me now to let go of my perceptions of what is real and what is correct and to help her enjoy the memories of the life she thinks she lived. These shadow memories and experiences, with the butter in the shoes and the exotic stories of a life well lived, are now a part of the journey.
After years of living with this disease, I have found that the most important things, the things that matter, are centered on helping preserve her dignity and her happiness. That is the best gift I can give my mother.
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— Leeana McNeilley is the director of Help Unlimited.