Since I began writing this blog in May 2010, I have written a number of articles that speak to the issues experienced by the caregiver as well as some that attempt to give a voice to the struggles experienced by an AD patient or family member. In looking back over what has been posted, I felt it appropriate to revisit some of the anxieties that are experienced by a substantial majority of both AD and dementia diagnosed people. I call them the four fears.
Fear of Abandonment
No one enjoys or looks forward to the prospect of being abandoned by a loved one, their friends or their family. By way of contrast, the onset of cancer or heart disease with a family member seems to act as a force that brings families closer together, while the onset and diagnosis of Alzheimer’s often causes the opposite effect. Something about AD and dementia that strikes some people as abhorrent or repellent to their senses.
Why? Who knows? Perhaps it remains part of a deep-seated societal ignorance and prejudice that cannot differentiate between diseases of the mentally ill such as psychotics, paranoid schizophrenics and bipolar disorder from the true melting away and wholesale destruction of the brain that is Alzheimer’s. The former conditions involved disturbances in brain operational software while the latter represents the wholesale destruction of virtually all of the brain’s hardware.
The World Alzheimer’s Report 2010 authored by Alzheimer’s International and released in September 2010 touched upon the widespread prejudice and ignorance that is still prevalent in many of the developing and underdeveloped nations of the world with respect to AD.
Within even the industrialized nations of the world, empowering information and educational initiatives abound that offer straightforward facts about what AD is and how it develops. Yet present here as well, ignorance and stereotypical views stubbornly remain.
So there is substance underlying the fear of the AD sufferer that one or more of their family might find that what is happening to them is too strange, too distasteful and something instead to run away from. This is tragic since the person diagnosed with AD did not choose this fate; rather AD chose them.
The answer and countermeasure here is empowering education through support groups that leads to compassion and acceptance for what the AD patient must endure.
Fear of Being Forgotten
On January 27th 2011, I posted a blog entitled, “Don’t Let Me Be Forgotten.” Prior to this, a blog entitled, “Don’t Give Up On Me: I’m Still Here!” was posted on June 22nd 2010. Both attempted to address the feelings experienced by a family member laboring with AD.
All of us who are living hope to go to our graves with some kind of positive legacy, something tangible left behind in terms of a memory thread of who we were, what we stood for, our noteworthy deeds, etc.
The AD sufferer fears not only the eventual loss of all of their own memories, but frets that the memories others hold of them will somehow be erased or dissolve away as well. They fear the notion of being blotted out of existence altogether.
This fear can be countered with loving reassurance. While your loved one still possesses some or most of their cognitive abilities, assemble and compose a memory wall of photos, letters, snapshots and memorabilia representing the best of times of who the loved one was and what they stood for. Even after the loved one or patient has passed, a memory wall can be relocated to a hallway, room or other significant place within the home to display in honor of that brother, that sister, that mother or that father.
Fear of Being Marginalized (Not Respected)
As AD begins to take hold of a person and the dismantlement of their minds gains traction, a third fear that arises is that of being marginalized. To be marginalized is defined as the action by one person or group to discount, trivialize or undermine the validity of another person or group.
“ I am no longer looked upon as a completely whole individual. What will my family, my friends and my town or village think of me? Will I still fit in or will I be cast out?”
Since AD sufferers begin to loose their crucial cognitive skills, their changing stature and behavior is viewed by some of our world population as that of damaged goods, of imperfection, lacking and wanting for completeness. This is unacceptable ignorance and the prejudice of superstition.
The remedy here is ongoing education: about what the disease is as well as what it is not.
Fear of Being Talked Down To
Since Grandma’s behavior has become very childlike, the presumption is that she should also be treated like a small child. We as adults do make the mistake of talking down to children instead of talking to them in terms understandable at their level.
While Grandma’s behavior may have become comparably childlike, her feelings and sense of self worth are still those of an adult. Memories may now be disappearing but her dignity and humanity still remain. Rather than resort to talking down to her or in a tone of condescension, learn the art of talking to her in comprehensible terms (to her). This may mean that you will have to change your style of communication that you have unconsciously practiced for years. Oh well, time to get busy!
The Four Fears.
They are real and burdensome baggage for AD diagnosed people. You can have a substantial impact in alleviating these fears by taking one simple step. Exercise a choice that you still have. The ability to step across that threshold and enter Alzheimer’s World. While you are there, learn to speak that language. You can shuttle between the two realities whereas your loved one cannot. Choose to be there lifeline, their connection to the world they once inhabited with you.
Jeff Dodson
February 16th 2011
