A Personal Take on the Stigma of Alzheimer's, Dementia
A friend recently posted the following question on Facebook – “When will the ‘shame’ of Alzheimer’s leave us?”
My friend directs a respite group and was frustrated that a family member had decided not to enroll a loved one because they didn’t want to say the word “Alzheimer’s” or to be open with the person who has the diagnosis. My friend said that while she understands the avoidance in discussing memory problems with a loved one, she really believes in an open discussion with all family members about the diagnosis of Alzheimer’s and dementia, which also can help the family make decisions about treatments and to create a care plan. She noted that this is especially important when the person has mild or moderate cognitive impairment in that family members can gauge the loved one’s desires about future care and then make appropriate plans. She encouraged people who are worried about the loved one’s reaction to talk to a doctor, representatives from the Alzheimer’s Association and friends who have gone through the same thing. “Pretending there isn’t a health issue will only cause problems,” my friend wrote.
I understand what my friend is suggesting and I think, with time, this type of conversation will be increasingly possible. But I also can understand the family member who decided not to enroll a loved one because of not wanting to say the word “Alzheimer’s.” In fact, not only can I understand that perspective, I was that person.
Let me explain. My mother was scared to death of dementia. She had watched other relatives on her side of the family suffer from dementia (then known as old-timer’s disease). When I was in high school, my grandfather suddenly died and Mom moved Grandma, who was displaying some memory loss, into our home while also running a business and taking care of the needs of my father and brother. That arrangement worked for a while until my brother, who was around the age of 11, started noticing that Grandma was urinating in the corner of his bedroom. Mom soon had to find other options for Grandma to live.
Mom moved her mother into a nursing home and became diligent in her visits. Mom would go over to the nursing home twice a day to make sure Grandma was eating properly. When Grandma was no longer able to feed herself, Mom took over – and she took my brother along to help when he was out of school. When I was home from college during the summers, I was given the lunch-time assignment and told to take my brother along to help. This continued for several years as Grandma, once such a vibrant presence, became a shell of the woman she had once been. Eventually she no longer communicated with anyone and stopped walking. She eventually passed away.
After watching all of this unfold with Grandma, Mom stopped me several times starting in my late 20s to tell me, “If I ever become like Grandma, I want you to take me out to a desert and then let me walk away. You need to drive off without me. Do not ever put me in a nursing home.” She repeated this sentiment often and forcefully to me.
So when Mom’s memory loss began in 2002, what was I supposed to do? She avoided the topic totally, getting into heated fights with my father when he brought up her mental lapses. Their battles eventually led to talk of divorce. She refused to go to the doctor to see what was going on with her memory. The only way that we managed to get her to go see a neurologist was when I calmly brought to her attention that her memory issues could be treatable (and repeated it several times on the way to the appointment). At that point, she was diagnosed with mild cognitive impairment.
Once Mom was diagnosed with Alzheimer’s a year later, I never used that word or dementia within her hearing. I knew that it would set her off in a rage and that there also was a strong possibility that that promise that she extracted from me all those years ago might be brought to my attention. Instead, I focused on providing the best care that I could by being the best advocate I could be for her while she was in the nursing home.
So while I wish that we lived in a world where we could have a calm conversation about Alzheimer’s with a loved one who may have the disease, I know that that never would have happened in my family. Alzheimer’s and dementia carried too much of negative memory based on what Mom had experienced with her mother.
Perhaps eventually those feelings will change as the Baby Boomers move further into aging and begin developing dementia. Perhaps this group will help remove the stigma from the topic of mental health, much as they did for topics related to civil rights, women’s rights and so many other areas that were not discussed in the 1960s. Hopefully my friend will be right and these conversations will happen regularly among families in which a loved one has been diagnosed with dementia. Here's hoping!