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    Bob Mauterstock

    A Test for Alzheimer’s?

    Panels of experts convened by the National Institute on Aging and the Alzheimer’s Association have developed new guidelines for the detection of Alzheimer’s disease. Using the old guidelines to diagnose Alzheimer’s, doctors must substantiate and identify a steadily progressing dementia  and an inability to carry out day-to-day activities like dressing or bathing. This must be accompanied by a pathologist’s report of plaque and other abnormalities known as tangles discovered in the brain after death.

    But researchers claim that by using new methods, Alzheimer’s can be identified a decade or more before dementia sets in. Under the new guidelines, a diagnoses can be made by using results from what are called “biomarkers,”  These biomarkers are tests such as brain scans, M.R.I. scans and spinal taps that reveal telltale brain changes.

    Scientists claim that these biomarkers can identify three stages of dementia, preclinical disease, mild cognitive impairment due to Alzheimer’s disease and lastly Alzheimer’s dementia. They state that diagnosis of people in the final stages of the disease will be much more definitive using biomarkers. But they also state that the earlier a diagnosis is made, the less certain it is.

    What are the implications of this research? For those of us with Alzheimer’s disease in our family, it opens up all kinds of questions. Some experts tell us that 50% of adult children whose parents have Alzheimer’s will also contract the disease. Should we go through the biomarker testing? What if it reveals that we are in the preclinical stage? Do we change how we live our lives? Do we seek some kind of treatment or start doing more crossword puzzles? There clearly is no present cure, so are we just giving ourselves an early death sentence?

    Other implications for the use of these research techniques may evolve. Will insurance companies start using them to determine if you should be covered for health, life or long-term care insurance.? And even if the tests are not totally accurate, will the insurance companies use them to reduce their risk?

    Using the biomarkers, scientists believe they can develop drugs that can control or cure Alzheimer’s. Dr. William Potter, a neuroscientist at Eli Lilly, stated, “We wanted to get out of what I called 19th century drug development— give a drug and hope it does something. What was needed was to find some way of seeing what was happening in the brain as Alzheimer’s progressed and asking if experimental drugs could alter the progression.”

    For the time being, however, I have decided that I really don’t want to know if I am in the early stages of Alzheimer’s.  I’m just going to live my life as if every day mattered.

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    Alzheimer’s Children

    I used to visit my mom at least twice a week. She had been diagnosed with Alzheimer’s disease and used to live in an assisted living community dedicated to memory-impaired residents before she passed away. When I would see her, she often commented that everything was mixed up, that she couldn’t remember anything and that she was very frustrated. I would sit opposite her and acknowledge her frustration but couldn’t really say that I understood what she was going through because I didn’t.

    When I was with her, I would try to put myself in her place. What if I tried to remember my spouse’s death but couldn’t remember when it was, if I was at the funeral or what the cause of death was? What if I searched my memory and couldn’t remember if I had one or two children and didn’t know where they were born? Imagining this situation would make me very anxious.  I would ask myself the question, “If I no longer have a past, do I have an identity? Would I become a non-entity?”

    Certainly my mother didn’t disappear during this time. She was a warm, loving presence in her community. Everyone who knew who she was commented on her friendly disposition and her sense of humor. It is interesting to note that once she began to lose her memory, she became a warmer, more caring person. She was very thankful for any show of kindness by anyone in her community and was so happy when I would come to see her.

    Perhaps there is a valuable lesson here. Doesn’t our memory often define who we are? When we are faced with a decision, don’t we usually look back in our past and see how we handled it before? Or, when we are in a challenging situation, don’t we often determine what we will do based on our success or failure in similar situations in the past?

    Isn’t this approach to life very much like driving on the road  looking in the rear view mirror? How much of our experience is actually new and fresh? Or is it mostly a rehash of what we’ve done before? With this perspective, I have begun to look at memory in a new way. If I had no memory, wouldn’t each experience be interesting and unique? Wouldn’t it be very much like a young child facing life for the first time?

    Perhaps we should begin to look at Alzheimer’s patients as those who live life totally in the present. When is it that they begin to accept their inability to recall events and live life totally now? And when they are able to do that, doesn’t life become a never-ending new experience with no barriers or limitations?

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    Are you your parent’s parent?

    Recently I have been giving a number of talks at Assisted Living Communities about the ideas in my book, Passing the Torch: Critical Conversations With Your Adult Children. I make a point of talking to a number of attendees before each meeting. Many of them are the adult children of elderly parents who are beginning to struggle with maintaining their own homes and leading an independent life.  I can see the turmoil their children are going through. I went through it myself.

    When you see your parents making every effort to maintain control of their lives but at the same time watch that control slip away, it is a very sad thing. When my mom kept getting lost making the trip from her apartment to the dining hall at her independent living community, I knew we had a problem. But I tried everything I could not to disrupt her life and keep her in an environment where she was comfortable. I didn’t want to upset her. We hired round the clock aides to assist her, but after a month we realized it wasn’t working.  She became even more confused when the aides kept changing every 8 hours.

    Finally, my wife presented me with the cold, hard facts that I had been trying to ignore. My mother could no longer live in her lovely two bedroom apartment. We had to move her to an assisted living community that specialized in serving memory impaired residents. I was shocked and upset but I knew my wife was right.

    My wife found a wonderful facility close to where we live that had only 50 residents and was known for its Alzheimer’s care. The day finally arrived when we were going to move her. I was a nervous wreck. What if she refuses to go or gets very upset? I slipped into my role as her child, not willing to become the strong parent that I needed to be. But my wife rose to the occasion.  She told my mother that we were going to a place where they would help her get back on track and start to feel better.

    The first few nights were ok, but she kept asking me on the phone, “When am I going to go back home?” My wife assured her that she would stay there until she was doing better. After a few calls to the director stating that I thought this was a bad decision and my mom was ready to go back home, the director suggested I not call my mom for several days. She was absolutely right. My calls were the trigger that made her think back to her previous life and kept disrupting her adjustment.  I held off on my calls and she began to adjust.

    After a week my wife stated, “We’ve got to move her furniture up to her new room and store what she doesn’t need.” Again, I became my mother’s child.  I was concerned that she would be unhappy with me or disapprove of what I was doing.  I responded with, “What if in a few weeks she demands to go home and says she doesn’t want to be there. What do we do then?” My wife replied, “ If she says that, do you really want to move her back to a place where she’ll be lost and confused? Do you think that is the right thing to do?” I knew we were making the right decision, but it seemed so hard at the time.

    My mom remained at her new home and was quite happy until her passing in 2014.. We know that we took the right steps to change her environment and put her in a community that offered her the care she needed. I am sure that there are many other adult children facing the same decisions I had to make. Fortunately, I had a courageous wife who would not let me ignore the reality before me. I learned that it is very difficult to become your parent’s parent, but it is often the only thing you can do.

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    Aging With Dignity

    Have your parents told you want kind of care they want at the end of life? What if they can’t communicate with you when the time comes? They need to have a document called a living will to make their wishes known. This document is also called an advance directive.

    Doctors and lawyers have been urging Americans to fill out advance directives for decades! Yet, according to the Wall Street Journal, less than a third of American adults and less than half of nursing home patients have done so. Many people don’t want to face the fact they they may become sick and not able to communicate with their family how they want to be taken care of.

    Your parent might say, “If I get to that point, I don’t care what happens to me.” You might respond,”Maybe you don’t care, but we do!” Without specific instructions, family members may have to decide whether your parents want to be kept alive artificially, what level of disability they are willing to live with and how to let them die if they had no hope of recovery.

    If family members aren’t available, doctors generally can make the decision whether or not to discontinue medical care if future steps are futile. But many refuse to do that, largely for legal reasons. Without other instructions, in most cases, doctors will attempt to keep a person alive at all costs.

    But studies have shown that most people would not want life sustaining care if they were in an irreversible coma. On the other hand, some patients  might want to be kept alive at all costs and some religions require it.

    Advance Directives are not just about ending life, however. Aging With Dignity ( www.agingwithdignity.org) is a non-profit organization that has developed a form which covers five different important areas that should be addressed. These include:

    • The person I want to make health care decisions for me when I can’t make them myself. (health care proxy)
    • My wish for the kind of medical treatment I want or don’t want.
    • My wish for how comfortable I want to be.
    • My wish for how I want people to treat me.
    • My wish for what I want my loved ones to know.

    This form is legal in 40 states. It is not only a living will but It also identifies a health care proxy, an equally important advance directive. The health care proxy is a person who is responsible to carry out you wishes and make medical decisions for you if you cannot. This person must be at least 18 years of age and should not be your health care provider or an employee of your health care provider.

    You can receive the Five Wishes Form through the Aging With Dignity Website ( www.agingwithdignity.org) or call them at 1-888-594-7437.

    Caring Connections, a program offered by the National Hospice and Palliative Care Organization, will provide you with directions on the process of end of life planning. It specifically focuses on the naming of a health care proxy to act in your behalf. You can download the forms to name your health care proxy specifically approved in your state at: www.caringinfo.org.

    Advance directives do not have to be filed officially. They go into effect automatically as soon as they are signed and witnessed; some states may also require notarization. It’s important to give your family members and doctors copies, or at least instructions on how to access them. Some states have electronic registries that store advance directives online.

    And by the way, if you haven’t already figured it out, advance directives are not just for your elderly parents. You need to complete them as well! Because in reality, it’s not just old people who get sick or have accidents.

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    PERMISSION TO REPRINT:
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    Financial Advisors may reprint any articles from The Gift of Communication Blog in your own print or electronic newsletter. But please include the following paragraph:

    Reprinted from Bob Mauterstock’s The Gift of Communication Blog. Subscribe at http://www.GiftofCommunication.com  and receive Bob’s Family Meeting Checklist Guide.