FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Showing posts with label Alternatives. Show all posts
Showing posts with label Alternatives. Show all posts

Tuesday, November 27, 2012

The Atlantic


In Alzheimer's Disease, Maintaining Connection and 'Saving Face'


Richard C. Senelick is a neurologist who serves as medical director of the Rehabilitation Institute of San Antonio. He is also editor in chief of HealthSouth Press.
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Part one in a series on how people with neurologic disorders open and utilize new channels of expression
savingface615.jpg I've decided that all older men with gray beards must look alike, because each week I am mistaken for someone else. But, if I were to shave my beard - which I have worn for over 40 years - I believe that my friends and colleagues would fail to recognize me. I would be a different person to them because of this small, physical change. 
If such a small change affects the way people see me, then the larger mental changes that Alzheimer's patients experience must truly and deeply change the way their loved ones see them. Dr. Daniel Potts, a neurologist at the University of Alabama, has begun studying the concept of "saving face" and preserving the "person" in people with dementia.
Dr. Potts' father, Lester Potts, became an acclaimed watercolor artist after his Alzheimer's diagnosis. He had lost his verbal abilities but could express his feelings through his art. This bolstered his retention of self-worth and dignity. His paintbrush let him bypass the part of his brain that Alzheimer's blocked, and communicate in a new way.
But before we find out more about art and Alzheimer's patients, let's go back to the "face" part of saving face for just a moment.
You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing.
How is it that most of us instantly recognize someone before they utter a sound? How can we can pick a certain individual out of a large group photo? Large portions of our brain are dedicated to facial recognition and interpretation. What we see may trigger whole sets of emotions, memories, feelings, sounds and even smells. A picture of my grandfather triggers the wonderful aroma of his ever present half-chewed-half-smoked cigar. I can't help but smile when I see his face.
We automatically interpret others' facial expressions, but as people age or develop neurologic disorders like Alzheimer's or Parkinson's disease, they lose their familiar range of facial expression. We look at or talk to our loved one and we no longer see what we saw before. People with Alzheimer's disease not only lose verbal abilities, but also lose the ability to truly express their thoughts and emotions with their faces. In turn, we lose the ability interact with them the way we did in the past. 
So, how can we learn what lies behind their eyes? Has the light gone out? Dr. Potts insists, emphatically, "No." He says, "We have to assure ourselves that our loved one is still with us, even though they don't always act like themselves. We do this by meeting them in their present-day world. We have to be open to their new ways of communicating, and help them find novel avenues for this expression."
We tend to preserve a mental image of the person as they were prior to their illness, the way we've known them our whole lives. Think about when you reunite with someone you haven't seen in 20 years. Before you meet with them, you have an image of them from 20 years ago frozen in your memory. You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing. As our parents age, we continue to see them as the people that we love and in the roles that they played in our lives in the past -- strong, supportive, and knowledgeable.
On top of these innate feelings, we ground so much of our adult identity in our vocational accomplishments that without them, many of us lose all personal identity. Of course, we don't want to be known only for our prior achievements. We want to be respected and admired for who we are now and what we contribute to our friends, families, and society. Those with Alzheimer's are no different.
Dr. Potts insists that when illness strikes we must validate the person in the present and "learn to love and appreciate who they are in their now." The person with Alzheimer's disease will not return to who they were so we must meet them and accept them in their new role. Dr. Potts tells family members and health care professional that they must:
  • Discover who the people were by taking the time to learn their story.
  • Appreciate who they are now and see them as more than their illness.
  • Demonstrate for them their current worth.
  • Help them preserve their personhood and dignity.
  • Find channels for expression that bypass those blocked by their disease.
  • Help them "save face."
We must develop new "languages" to help those with cognitive disorders communicate with us, for they still have much to say. Dr. Potts asserts that people with Alzheimer's disease are still "rich" with thoughts and ideas, but need new channels to express those thoughts and ideas. His father used water colors while others have used music, poetry or dance. Rather than park them in front of a television, we must explore alternative channels of communication that bypass the blocked channels in their brain. Dr. Potts tell us that we must provide the tools that provide an environment that focuses on the person, not the disease, and offer a variety of opportunities for expression that bypass the person's disability.
When faced with a person with a spinal cord injury or amputation, their doctor or therapist focuses on their strengths and builds upon their "abilities." Unfortunately, in progressive neurologic disorders, like Alzheimer's disease, we are more likely to focus on the eventual outcome of the disease and not on the person's reservoir of abilities. Dr. Potts tells us that we must recognize "that personhood still exists, even in the presence of Alzheimer's disease and assist the person in saving face."



Tuesday, April 24, 2012

A Tough One

This is going to be a tough one to write. My life is dramatically changing. Even as we speak I do not know for sure how to proceed. I do have alternatives available to me but all of them involve difficult choices.

Mexico was difficult for both Gregory and me. Gregory because he was disoriented most of the time. Me because I was "on duty" 24/7. Simple things like getting dressed or undressed caused him difficulties. My support often caused more confusion on his part. Did I hear you say HELPLESS? Yes, both of us. He helpless with what to do next. Me helpless with how to help.

While I am not ready to admit it, I think that Mexico might have been our last major trip. I fantasize about Europe (Paris, Italy, The Netherlands, England, Scotland.) I dream about a driving trip through the eastern U.S. to see the sights and to visit family and friends. A river cruse down one of the many great rivers of the world could be exciting. We watch Rick Steves and other travel programs and imagine. But I am not yet ready to admit that these might only be fantasies.

Gregory's re-entry after Mexico has been very slow. Re-entry you would think should be easier since it is back at home and routine and the familiar. But for some reason it usually is worse than when we were away. This time it is taking longer and many of the previous cognitive and self-help skills have not returned.

About a week or so ago, I felt like my life as I know it had changed. Gregory went to return the condo grocery cart to the lobby after we had brought the groceries to our unit. He has been doing this for the last five years since we moved in. Somehow this time he ended up on the 9th floor and didn't think to call me for help. He religiously carries his cell phone but I begin to suspect that he doesn't know how to use to make an outgoing call. He didn't know how to get back on the elevator to go to the lobby. I suspect that he got on the elevator on our floor and by the time he figured out which button to push, the elevator recording began "yelling" at him to select a floor and then the elevator just took off to someone else who was calling for it. He got off when it next stopped.

I called him after I thought he had been gone too long, found out where he was and went to fetch him. I gently asked if he could tell me what happened and of course he couldn't. I didn't press it but I cannot explain the weight I felt on my proverbial shoulders. I felt like our life would never be the same. Yes I can take the cart back but that was one of the last shreds of assistance he was able to give me. And the fact that he "got lost" in the building freaked me. Since then I have been afraid to let him and he hasn't asked to go on his usual long walks. He doesn't go swimming anymore. He sits and stares more and more. He "shadows" me when I am working around the unit or at my computer. He gets bored because he doesn't have anything to do but on the other hand, he can't do much.

I guess I will begin to go on walks with him now that the weather is nice and will take him swimming. But that means my life is on hold. I have begun the process of trying to find him a "companion" who can relieve me some of the time but that takes advance planning, scheduling, money, trusting another person, etc. It is a necessary thing to do but one that I am not ready for!

Since his getting lost, things seemed to be running a little smoother. I was able to get away for an hour to go to my Weight Watchers meeting last week. This week it didn't work. He wanted to sleep in. I made sure he knew where I was going and that I would be back in an hour or so. I left at 9:00 and when I got back at 10:15 or so he was still in bed. He asked, "Why have you been gone so long?" I asked "Why are you still in bed?" He replied, "I was afraid."

I had assumed that he would get up when ready and begin his breakfast. He usually starts off with a piece of toast or a muffin. I left his "placemat aide" (which pictures his breakfast choices) out for Tuesday breakfast. The assumptions I can make continue to be fewer and fewer and change from day to day.

So how can I go to my WW meetings? How can I go to Michael's Museum for a morning? How will I ever be able to be in an Opera again? How can I leave him in bed "being afraid?" I guess I am waiting for the aftershock of these changes to settle down so I can begin to investigate what options are available to me/us. Hopefully I will find the companion to be here but honestly, I am not ready for that level of his being dependent on me. What choice do I have?