alzheimers

    The iPad and Alzheimer’s

    Before my mom passed away, she was diagnosed with Alzheimer’s disease. When she was first placed in an assisted living center, she was quite alert and had a very sweet, loving disposition. She often referred to the aides and her fellow residents at Harbor Point as “dearie.”

    When I visited, I would talk to her a lot about her friends and relatives who had written to her or called her. Often she became confused when she tried to remember what they looked like or who they were. I found that showing her a photo of that person when I mentioned their name took away a lot of the stress and frustration, and she would recognize the person right away.

    When we celebrated her 90th birthday at a local restaurant. 12 people from the family joined her at the party. One of her nieces (Cheryl) gave her a gift card to her favorite restaurant (Ninety Nine), and she was just thrilled.

    My wife, Mary, took a number of pictures of everyone who had attended the party and I loaded these pictures onto my iPad. When I visited mom the week after the party, I mentioned what a wonderful gift her niece, Cheryl, l had given her. She was confused and thought it was another niece who had given her the gift. I immediately opened up the iPad, showed her the pictures of the party and pointed to Cheryl. “There she is, right after she gave you the gift.” Mom recognized her and acknowledged how nice it was of her to be so generous.

    I often used pictures from my iPad to put Mom back in touch with the important events and people in her life. One of my projects involved I borrowing all my parents’ old photo albums and scanning hundreds of pictures into iPhoto on my computer. My dad had been a real photo buff and often developed many of his own pictures. Several of these pictures were classic shots of both my parents when they were quite young. I have a wonderful photo of my mom in her beautiful white high school graduation gown. She looks absolutely stunning! I’ve also got several pictures of mom and dad as young sweethearts.

    I downloaded hundreds of these pictures onto my iPad and divided them into several albums representing different periods in my Mom’s life. When we would talk, she would often ask questions like, ”When did you get married? Was I there?” I would then go directly to the pictures of our wedding and show her that she was, in fact, there and looked quite attractive. We would go through a number of pictures from her past and discuss the events around them. She loved to look at pictures of my father when he was a sharp young soldier during WW ll. That would lead into extensive conversations about how great a father and husband Dad was.

    The iPad made it so easy to share pictures with her. The photos take up the whole screen and are quite clear. We could make pictures smaller or larger by squeezing or extending our fingers on the screen. Mom could change photos by just brushing her finger across the screen or tapping it. It was such a wonderful tool to share memories with her.  Frankly, I don’t know how I could have shared all these memories with her without it. The iPad enriched each visit we had together. And that made all the difference in my visits with her.

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    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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    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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    Are You a Likely Candidate for Alzheimer’s?

    I recently had the opportunity to participate in a radio series focusing on Alzheimer’s caregivers. My mom and I were interviewed by Sean Corcoran of WCAI radio, the NPR station on Cape Cod. The series was divided into five parts which were played on five different days. Sean did an outstanding job of illustrating many different family situations with a family member who has the disease. He has won many awards for his work and I am sure this series will be another award winner.

    Here is a link to the series: www.wgbh.org/wcai/alz2.cfm

    The research has shown that there are no specific strategies anyone can take to avoid the disease. No amount of crossword puzzles, brain teasers or mental exercises can protect your brain from Alzheimer’s. But according to Lisa Genova, author of Still Alice, the most incredible book I’ve ever read about an Alzheimer’s patient, early detection is valuable.

    Lisa states that, “Awareness leading to earlier diagnosis is important. Although the current drugs available for treating Alzheimer’s do not change the ultimate course of the disease, they can stave off its progression for a significant amount of time, allowing the person with Alzheimer’s to live on sort of a plateau, to enjoy the capabilities they still have for a longer time”

    Research has also shown that 50% of the children of Alzheimer’s patients will get the disease themselves. I am a child of an Alzheimer’s patient. Should I be tested to determine if I am likely to get the disease? Recent advances in testing can indicate if you have a very high likelihood of getting the disease but can’t tell you for sure if you will. So does it make sense to have the tests done or just let life take it’s course?

    At this point I have decided not to be tested but to live my life to the fullest and be conscious of the occurrence of symptoms. I checked with the Alzheimer’s Association and learned that there are ten indicators to be conscious of . If you have any of these ( or if a loved one does) check with your doctor:

    • Memory loss that disrupts daily life.
    • Challenges in planning or solving problems
    • Difficulty completing familiar tasks at home, work or at leisure
    • Confusion with time or place
    • Trouble understanding visual images and spatial relationships
    • New problems with words in speaking or writing
    • Misplacing things and losing the ability to retrace your steps
    • Decreased or poor judgment
    • Withdrawal from work or social activities
    • Changes in mood or personality

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    How to Find a Doctor for Your Mother

    I have been reading Jane Gross’s wonderful book, A Bittersweet Season. It is about her efforts to care for her mother in her last few years. Jane writes a blog for The New York Times entitled, The New Old Age. Not only is the book a very personal account of Jane’s experience with her mother, but it is the source of a lot of valuable information on caring for an aging parent.

    One of Jane’s problems was finding a family doctor for her mother when she moved from Florida back to the northeast to be close to Jane. She found it almost impossible to find someone that would take her mother.  Jane learned  a few facts about the medical profession that made things so difficult. First of all, fewer general practice physicians are coming out of medical school. These doctors just don’t make enough money. The average GP makes approximately $150,000 a year and their  loans from school are around $200,000. A typical anesthesiologist makes $400,000 a year. So medical  students are choosing to become much more highly-compensated specialists.

    Secondly, many doctors are choosing not to accept Medicare.  They can legally opt out of the program. Reimbursement from Medicare for various procedures is far less than what doctors often receive from insurance companies. In addition, reimbursement is not for time spent with a patient but for procedures ordered. If a doctor convinces an older patient not to have her hip replaced, he does not receive a dime. Often older patients take longer in an appointment than younger healthier patients, which also ends up costing the doctor more.

    Given these issues, Jane was advised to take the following steps when seeking a new doctor for her mother:

    First, get a referral from her existing doctor where Mom is now, before she moves. That doctor probably knows someone in the area she is moving to. That doctor will most likely be reluctant to turn down a referral from a peer.

    Second, get tightly-crafted summaries from her existing doctor and any specialists that have been involved. Less is more. The new doctor is much more likely to read something that is clear and concise.

    Third, if you can’t get a referral, scout the area for doctors in the area where Mom is relocating, before she moves. Check with local councils on aging, senior centers, medical societies, and similar organizations.

    Fourth, make it clear to the new doctor that one adult child will be the conduit for all communication. He won’t have to field calls from two or three siblings who all have questions. Prepare a plan within the family as to how communication will be disseminated from that key person. Show the doctor that you won’t waste his time.

    Lastly, the same sibling should accompany Mom to medical appointments and communicate the results to the rest of the family. A family that manages itself internally is more likely to find, keep and get the best service from a doctor.

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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:

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