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Health & Fitness

Senior Care: Why We are Afraid of Alzheimer's

Do we really know what a person with Alzheimer's is thinking?

Discovery Office Systems, Neighbor




Senior Care: Why We are Afraid of Alzheimer’s, written by Stan Lawson of Sequoia Senior Solutions

 

Are you afraid of Alzheimer’s? I would like to introduce you to retired physician and accomplished author, Dr. David Hilfiker. He was diagnosed in 2012 with a progressive mild cognitive impairment, which he says is most certainly Alzheimer’s disease. He offers his readers a profound perspective of what it’s like from inside the diseased mind. This information come from an article he wrote Why We Might Fear Alzheimer’s in the August 2013 AgingCare.com online magazine.

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Admit it. Most of us are afraid of Alzheimer’s because of what we see of a person from the outside looking in.  Most of us are seeing what the pop culture shows, which is Alzheimer’s in a person with the advanced disease. I’ve see them on television having anger or paranoia issues; wandering around lost; unable to recognize children; and then there are the ones sitting mutely in a wheel chair staring into space.  Maybe you have been around severely demented people, whose blank expressionless faces caused you to become embarrassed by not knowing what to say.

Our fears are reinforced by stories of stressed out caregivers, who work hard caring for their loved ones. You might know about caregivers who have lost the comfort from the person they loved and depended on for many years. You hear about the deep suffering from the part of the caregiver, but you don’t hear the actual experience of the one being cared for. I have written many articles on how caregivers can stress less, how they need exercise to be strong to take care of their loved one and the importance of belonging to support groups.

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What is the person with Alzheimer's thinking?

BUT I have never written about the loved one and what is going on in his or her mind. So we really don’t know because of our fear, our embarrassment, and the shame that surround Alzheimer’s. Because of this no one with Alzheimer’s is going to share a story. For that reason we know very little about what that person is experiencing. So we will ask Dr. Hilfiker to speak for himself:

We know little about the stages of the disease (many of which are not so scary). 

  • Early on, at my stage, no one notices the subtle symptoms and most people aren't going to volunteer anything, either, so we don't hear about early Alzheimer's.
  • As things get worse and memory deteriorates, people learn to hide their disability by faking normalcy (often quite well) or avoiding interactions completely, so we don't know that part.
  • At a more severe stage, the person with Alzheimer's may stay (or be kept) out of sight even though she is still able to contribute.
  • And after still further decline when the patient's memory has gone, it may be very difficult for the patient to be in public despite her capacity for meaningful interaction with others.

    • Are our fears real or imaginary?

    Dr. Hilfiker goes on to say that our fears don’t come from know what the loved one is experiencing, but from our imagination and our imagination is often triggered by not spending time with someone with Alzheimer’s. We imagine what it must be like to forget the name of our spouse or our child. We imagine what it must be like to repeat the same thing you just said many times already. We imagine what it is like to stand silent, unable to join in a conversation. We imagine what it must be like vegetating in a nursing home bed.

    But these are the products of our imaginations and have no basis in reality because we can’t know how a person with Alzheimer’s actually perceives the world. Could we have a distorted view here?

    Dr. Hilfiker says:

    Here are some counter-examples that do show each of these stages but the images are far different from what we'd expect.

    • I am myself early in the course of the disease and I can still write a blog of my experiences and find my way downtown to go bike-riding to the library with my grandchildren.
    • One delightful movie Friends With Benefits provides images of a later stage of the disease. The father is indeed sometimes confused, but not always, and he ends up playing an important and positive role in his son's life.
    • Joy is a significantly demented woman not really able to interact socially with others, yet she brings meaning and happiness when she visits our hospice.
    • Years ago I saw a documentary in which a daughter and demented mother were dancing joyfully around the room. The daughter later explained that her mother and she had had a terrible relationship most of their lives. Now her mother had forgotten those difficult times (indeed, had forgotten who her daughter even was), and for the first time they could enjoy each other.

      • He closes by saying that he has received many emails from people taking care of a loved one in the advanced stages of the disease who have wonderful relations filled with love, humor, closeness and deeper meaning. Old hurts are forgotten, reconciliation happens and both people stay completely in the present. We don’t know what we will be like if we develop dementia. So why are we afraid?

      For more great information, please come visit the blog at our Sequoia Senior Solutions website. 

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