By Lana Turnbull
Families…they’re the bastions of our memories – the proof of where we came from – the connection that makes us the individuals we are. The memories we share between the generations form the oral history of our families, and they are not trivial things. Then enters Alzheimer’s disease and silently takes them away. Suddenly, the connection between generations can be broken and the unrecorded history lost. Once it’s gone, there is no diagnostic program to “retrieve the data.”
Alzheimer’s disease has been called the the “cruelest disease” and the “longest goodbye,” but until you go through it with someone you love, you can’t imagine how devastating it is to everybody it touches. You also can’t conceive of the fear and anxiety it visits on the person who is suffering from it. Imagine not remembering what happened five minutes ago – wondering what you were doing, where you are now and why you don’t know how you got here. Imagine your mind telling you that it is 1950, but living in 2015. Without short-term memory, there is nothing to tether you to reality – nothing to reassure you that you are safe or cared for. Everything seems unfamiliar and confusing, like walking on unstable ground.
I feel compelled to talk about Alzheimer’s disease, because someone I love very much is going through the hell it brings. I want to offer some words of advice and, I hope, encouragement to others who might be going through it too, or who might suspect someone they love is showing symptoms.
Don’t make the mistake of discounting signs of forgetfulness or attributing them to normal aging. If someone you know and care about is having trouble remembering names, dates, seasons, and even how to use common household appliances or devices, insist that they see a gerontologist or memory specialist. The sooner a person is diagnosed, the sooner they can receive treatment to potentially slow down the disease’s progression.
Don’t be afraid to talk about it. When you avoid having a conversation about the problem out of misplaced “social courtesy” or to prevent embarrassing someone who you worry is exhibiting signs of the onset of dementia, you are only making matters worse. Have an honest conversation and talk with them about your concerns, treatment options and potential plans of care, so they know they are not alone in the struggle.
Be patient. Until you accept that the person you love has no control over their loss of memory, you can’t truly be there for them and accept and love them as they are. As parents we tell our children, just as we were told, that we will always love them, no matter what they do. Now it’s our time to tell our parents or grandparents, sisters or brothers, aunts or uncles…that despite their disease, we love them and we will be there for them, no matter what they do.
Be prepared. Know that until a cure is developed, there is no getting better for the person with Alzheimer’s disease. Prepare yourself and your family for each heart-wrenching step that will take the person you love farther and farther away from you. Live in each moment with them. Do everything you can to let them know they are not alone.
Remember the good times and don’t let the darkness of Alzheimer’s disease extinguish the memory of who they once were. That would be the ultimate indignity and the final tragedy.