The New Scarlet Letter

Dementia? 

The head nurse was right.

Of course, she was right.

Direct and unflappable, her words were clear.

My Mother had dementia.

But the head nurse was the only one who used that word. Even a year later, her doctors hedged their evaluation:

“She has significant cognitive difficulties…” wrote the neurologist.

“The results…are consistent with early Alzheimer’s disease…” wrote the internist (emphasis mine).

I understood their delicate choice of words; I realized there couldn’t be a definitive diagnosis.

But it took me years to learn what those careful words meant. And even after our “decade of dementia,” I am not sure I understood it at all.

Dementia/Alzheimer’s is a myriad of conditions; a multitude of behaviors; each with an unpredictable path; all of it painful.

But more than just painful; dementia has the power to shame.

And that shame is compounded by the underlying sense that if she just tried hard enough, she could think of the word; tell the story; find the road;

Recognize her daughter.

I believe Dementia is the New Scarlet Letter.

I say this because a friend’s father is forgetful and confused. To her, the signs are unmistakable.

But her sister claims he is faking; he just wants attention.

I say this because a friend’s mother has Alzheimer’s; once vibrant and popular, no one comes to see her anymore.

Suzanne is alone. Is it just too painful to witness her decline?

I say this because when I first said dementia, people said I was disrespectful. Friends would visit my Mother for twenty minutes and declare: she is fine!

For years I heard the chorus: she is fine.

I say this because I had tremendous difficulty finding resources to guide me through the labyrinth of physical, legal, social, moral, and financial issues. I received a lot of flawed advice.

For years I doubted my every decision.

And I say this because up until the moment of my Mother’s death, I never completely grasped a simple truth:

I could not ease her pain.

For years I confronted my mother’s dementia as if it were one more challenge. I came from a world where if you studied hard; you did well in school. You worked hard; you got a promotion. You picked the right partner; you got love.

Nothing prepared me for this.

I share these experiences with no small amount of trepidation. I am not a doctor, nurse or social worker. I do not have encyclopedic knowledge or answers to profound dilemmas.

But I do have stories: what we witnessed; what helped; what I would do again; a lot I would do differently.

I hope through sharing these stories, A Swift Current can be the source of ideas and even refuge. I welcome you to share your stories with me.

And together we will say the word

And not be ashamed.

Dementia.

The Three Windows Will Barnet, 1992, oil on canvas, Smith College Art Museum

The Three Windows Will Barnet, 1992, oil on canvas, Smith College Art Museum

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12 thoughts on “The New Scarlet Letter

    • Thank you for your generous comment. I am deeply moved that you are currently caring for a person with dementia, and you understand all too well the reality behind my words. I look forward to reading your blog. Before I do that, I want to tell our story here…and then I intend to broaden my discussion to include other blogs, films, articles, etc as the conversation unfolds. I will be interested in your perspective. Thank you, Hallie

  1. Oh, this is so true. I have been seeing signs of dementia in my dear dad for a couple of years now (ever since we lost my mom…I think she was sheltering us from the changes in him). It has been especially difficult because up until recently, I was the only family member willing to acknowledge what was happening…my brother only recently (and to a limited extent) is willing to face what’s going on. My dad still tries to hide his lapses…but, it’s clearly becoming more difficult for him to do so. I see the future, and it is so scary. Thank you for shining a light on these tough issues.

    • Thank you Joanie for commenting on this tough subject. Your experience is not at all unusual; couples often take care/cover for each other and the children often are not aware of the extent of their difficulties until it reaches a crisis mode. And your dad’s efforts to hide his lapses are common (and heartwrenching); I can only imagine how difficult it must be to admit mental failings.
      The neurologist who examined my Mom told us that “educated people are more difficult to diagnose” because they have mastered the expected conversational patter (my Mom could easily make it thru a brief conversation without exhibiting signs which made people think she was “just fine”). Even when answering the neurologist’s questions, like “who is President”, my Mom responded “Oh, I don’t worry about those things anymore!” which you have to admit is a pretty good way of deflecting the issue! I might include these examples in a later post, but mention them here in regard to your dad’s efforts to cover for himself…I think his efforts are to be expected, and quite poignant. I wonder if the stigma of dementia were removed, whether more family members would feel comfortable admitting the problems (and pitching in to help) when the issues take center stage. Or is it just human nature that some people take responsibility, and others can’t even admit there is even a problem…
      Again, thank you for your comments. Hallie

  2. Thank you for this.. I look forward to hearing more… The embarrassment we tend to feel for those with dementia. The tendency to want to cover for them. Isn’t that all shame? What a shame…

    • Thank you Sarah…it is an interesting question…if you say something goofy when you are a child, you’re cute and funny. But if you say something goofy when your old, you are an embarrassment. And yet the child’s brain might have more cognitive skill than the old person’s (I am not sure if that is scientificallly true, but you get the point). I will be writing more on this…but it seems to me that if we truly accepted the fact that it is the diseased brain causing demented/outrageous behaviour, and that the patient can no longer act/speak in rational socialized manner, maybe there would be less shame and more understanding/acceptance.
      That being said, it was always hard for me to grasp that the disease was in charge because my Mom LOOKED like my Mom…so I kept thinking she would act/speak like my Mom; it created a huge gap in my ability to understand that the disease had taken over. As they say, looks can be deceiving…
      I intend to write more about this…Thank you for your comment, Hallie

    • Thank you. I know that things are tough and you are a shining star in your Mother’s life, as your Mom is in yours. I am very moved that this writing has helped as you enter this sad and unknown territory. It is what I set out to do by starting this blog, and that I can play this role is staggering to me. Again, thank you.

  3. You have no idea how important your posts are for me and my family. We have not gotten to this point yet but there are times when I see a bit of “something”….and my brothers notice it and although it is not “right in our face” sort of speak, we know something is different now. You were right when I read in a reply you made above about it being more difficult to recognize in educated people and that surely is my Mother. Thank you so much for writing this blog. I have had a series of emotions through out this journey with you, especially when you discussed the family home. Be well.

    • And I cannot tell you how much your observations mean to me. So it works both ways! The good news in your post is that it sounds like your family is united and no one is in denial…I have heard so many stories of people not wanting to believe the signs as they unfold.

      I appreciate your response…every time I hit the “publish” button, I freak out (that is a technical term) that no one will be interested and/or comment… thank you for taking the time to share your thoughts. As I get more comfortable with this forum, I am elaborating on the discussion in these comments/answers. I didn’t pursue this (as much as I should have) with the initial posts– I was so intimidated by the thought that people were actually reading my writing(!). Thankfully, I am more at ease now and appreciate the chance to have this dialogue.

      So thank you! Hallie

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