Word of the Week: Normal

Let’s talk about “normal aging.” (This is a rant. I’m just telling you up front, so you’ll know. You don’t have to agree. I just have to get it off my chest.)

Okay. The medical profession and the related care-giving professions and the Alzheimer’s Association and everybody who has anything to say about dementia draw a line between “normal aging” and “cognitive impairment”. They all provide you with handy checklists to determine whether you or your loved one might be in the early stages of dementia. Because we’re all very worried about not being normal.

“How do you know whether a forgotten name or lost set of keys is a sign of dementia, or just a part of ‘normal aging’? What kinds of cognitive changes are to be expected in everyone’s brain, and what kinds indicate disease?”

In other words, who’s normal, and who’s got bats in her belfry?

I have spent time around a lot of elderly people in the last four years, since Mom moved to an assisted living facility five minutes from my house. I have seen people with walkers, people in wheel chairs, and people who could out-walk me in a marathon. I have seen people who repeat themselves or blurt out inappropriate comments (“Nice breasts!”), and people who could give a college lecture on the spot.

I have met people with high blood pressure, diabetes, bad hips, bad knees, and bad eyes, and people with none of those conditions. I have met people with curved spines and straight backs, bald heads and flowing manes, dentures and perfect teeth.

So I ask you: if there’s that much variation in the elderly, what the hell is “normal aging”? And why isn’t dementia considered part of it?

I ‘m reading a provocative book called The Myth of Alzheimer’s that raises this very question. I haven’t finished it, but I’m intrigued. Maybe, the authors argue, it doesn’t help to think of dementia as a Big, Scary, Abnormal Disease. Maybe it actually obstructs our view of the perfectly normal person we are trying to help.

I’m not saying Alzheimer’s doesn’t impair people. Of course it does. So does arthritis. But nobody claims that the 85-year-old with arthritis is not experiencing “normal aging.” The arthritis is an obstacle, yes. It’s something to treat, something to adjust to, something to learn about. If Grandma or Grandpa has arthritis, we expect them to change. We don’t ask them to do tasks they can’t do anymore. Yet we don’t cut them out of our lives because they’re impaired. Okay, Gram can’t snap the beans for dinner or hang the laundry on the line, but she can chat with us while we order take-out and toss the clothes in the dryer. She can be part of our lives.

We make it possible for the person with arthritis to live as independently as possible. If Gramps can’t deal with shoelaces or belt buckles, we give him Velcro shoes and elastic-waist pants (good-looking ones, if it matters to him). We acknowledge his condition, but allow him his dignity. We certainly don’t consider him abnormal. But the person with dementia? That person has a Big Scary Disease.

Changes in the brain are scary; I can attest to that. When they first show up in someone you love, they can shake you to your core. But when you step back and breathe, when you look at them calmly, you can begin to see brain changes the way you see physical changes: as a part of life. We get old. We decline. We die. That’s normal, isn’t it? We are still part of the community, whatever our impaired condition. We can’t do what we once could, but we don’t deserve to be written off.

I don’t know what’s “normal” anymore. I like to think there are endless ways to grow old, just as there are endless ways to grow up. Mom is growing old with dementia. So did her mom. So might I. That’s our normal. What’s yours?

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15 thoughts on “Word of the Week: Normal

  1. Rage on, sister! When a doctor asks my parents about one ailment or another, they often looked puzzled as say something like, “I’m 83, what do you expect?” Each of them has dementia, mom much worse than dad. But I don’t think they’ve ever viewed it as an out-of-the-blue sort of diagnosis…but more akin to what you’re saying…as natural as arthritis in the elderly. That doesn’t mean I don’t want a cure or a treatment (or feel especially horrible for folks with early onset Alzheimer’s). But my parents’ views have helped me a bit to make peace with dementia, even though I hate it daily.

    • Agreed! Of course I want a cure, if there can be one. But even when there is, I want the person with dementia treated as a valuable member of a community. Thanks for your perspective!

  2. If we talk of a cure, then we must be thinking of this as a disease. Yes, like osteoarthritis is actually also a disease. As part of the medical community to whom many elderly and their families come for help in managing this particular disease, I say go ahead and vent! Go ahead and rant! I will do so with you. Most of my efforts to care for people suffering with dementia are designed to maintain their independence, help them to continue to function in their daily lives, and even find ways to slow the inexorable progression of pathology. We are making some strides in this effort , but so much is left to be accomplished.
    Much of what you have said could also apply to those who suffer from other brain diseases like schizophrenia, bipolar disorder and depression. What is normal indeed? Spend a day in my office and your perspective on normal is likely to take flight again. Please don’t ask on which side of the line I fall (the answer can fluctuate!). Maybe normal is as normal does.
    For my part, I try to ease suffering. If my sweet dementia patient is hallucinating children playing in their room ,and finds them companionable, I don’t medicate this symptom. I prefer to name them and call them family, grateful for happy company to cut through otherwise lonely hours. If my patient is hallucinating hands of demons reaching for them to steal their soul, causing fear, anguish and misery, I do my best to make it go away.
    I can prescribe a scooter to help an arthritic patient enjoy her life. I can prescribe a therapy puppy for a person suffering with dementia or schizophrenia. Lots of things matter when it comes to quality of life. Our great failure as a society, when dealing with the ravages of mental illness in all its forms, has to be the shying away, as if it’s contagious, or shameful, or both. It is understandable at least, that we fear it more than any other disease. We fear the loss of ourselves. We fear the loss of control. We fear helplessness in all its forms.
    While we have no cure, we could do much better at care. Maybe we can start by recognizing the “normal” in all those who suffer with mental illness, and work harder to embrace them in our communities.

    • I really appreciate this point of view. I was a little nervous about this blog post, because I didn’t know if it would seem naive to the people in the medical community. I’m very grateful for what you have shared!

  3. Someone once said, “Misplacing your car keys is norma; not knowing what they are for when you find them is not.”
    I went back a few years ago for a refresher for my long unused RN, and we learned that normal aging does not include dementia. That doesn’t mean though that dementia is uncommon. It is common as humans to experience disease, breakdowns of normal health. These are common states of not being normal.
    Diabetes is not considered normal, but it isn’t uncommon in our population. So our understanding might be that many people live their whole lives with few or no health breakdowns such as diabetes or dementia, and they therefore are considered normal regarding health.
    I look at it life this: breakdowns are just that: they are when we are not functioning at full capacity, whether from a cold or cancer or depression. But most of these breakdowns come to most of us at some point, so I think of them as common, and often temporary, whether by treatment or by merely running their courses, or, maybe permanent and one must learn to adjust.
    Maybe the best approach is simply to say that these conditions in life just are.

    • Hmmm . . . Yes, we need to keep examining which words help us understand how to help others. Truly, these conditions “just are”; the larger question is whether we’re willing to embrace people who have them. Thank you for reading and responding, Lori! It means a lot to me.

  4. Fully agree Carolyn. I think because dementia of whatever description is challenging to our sense of “normal”, time consuming, and requires thinking outside the box, it scare us. I found once I relaxed and just went with the flow of my moms reality at each moment, we enjoyed each other immensely. that time in her life was the biggest blessing in mine. Love to you and to your sweet mom.

  5. Carolyn, you make me weep. I can’t always read your blog, though I find it unbearably lovely — perhaps BECAUSE I find it unbearably lovely! Most of the time, when trying to cope with my own mother’s dementia, I feel useless and inadequate, and I continue to rage inside and grieve for my, to me, “lost” mother: I do not recognize this new person, and she doesn’t seem to like me as much as the old one did. I admire you; I am inspired by you. Thank you for sharing these moments and thoughts.

    • My dear, dear friend! This is part of the journey, and the journey is not always over easy terrain. You, like all of us, are doing your best. One foot in front of the other. Know that you are part of a loving brigade of fellow travelers

  6. Thought provoking! It is hard to think of the bizarre antics that dementia often brings as “normal” – “common” maybe, but the life we are leading with MIL surely can’t be described as average…

  7. Superbly expressed, Carolyn. You have a real gift with words, charged as they are with a spirit intensely alive.

    I cannot find a single scientific document that defines normal aging? If you can, please bring it to my attention.

    My guess is that with respect to Alzheimer’s disease what is being used as the criterion of “normal” is “optimal.” Which is to say that people said to have Alzheimer’s disease are not aging “optimally,” and thus not “normally,” optimally of course being measured by people who–you guessed it–do not have “Alzheimers disease.”

    But truly,

    • Oops.. But, truly, if you can help me find any information that educates my ignorance on this front–and I would not be surprised or disappointed to see it!!!–please bring it to my attention.

      Love your writing! Big big bridge hug,
      Michael

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