alzheimers

    Still Alice

    A number of books have been written by family members who observe the deterioration of a loved one or friend who has Alzheimer’s. But Still Alice by Lisa Genova is the first book I have read which describes the experience of losing one’s memory through the eyes of the individual herself. This incredible novel is Lisa’s first work. She has a Ph.D. in neuroscience from Harvard. Her extensive research is clearly evident. Not only did she work with professionals in the field but through the Dementia Advocacy and Support Network, she spoke daily with people suffering from Alzheimer’s.

    Still Alice is a novel narrated by the main character, Dr. Alice Howland, the eminent William James Professor of Psychology at Harvard University. Alice is an expert in psycholinguistics who begins to notice strange things happening to her. While she is on a run in her Cambridge neighborhood she finds herself lost and confused. Through her eyes, we experience her decline from a noted scholar to a woman who does not know her husband and children. It is a frighteningly realistic journey. As the son of an Alzheimer’s patient, I can clearly identify the behaviors she begins to experience.

    In addition to her own behavior, we observe the devastating impact the disease has on her husband and adult children. Plans made when she is first diagnosed become a shambles as the family is shocked by her swift decline. Lisa Genova also stresses the importance of support groups not just for families of Alzheimer’s patients but for the patients themselves. There are very few outlets for these people to the share the fear and confusion they experience. We are often more concerned with the family’s expression of grief and overlook the patient’s own reality.

    I strongly recommend this book to anyone who has any contact with an Alzheimer’s patient. it will give you a much better understanding of what it is like to stand in their shoes. Nothing I have read evokes such powerful emotion and insight.

    In 2014, the book was made into a major motion picture starring Julianne Moore as Alice.

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    4 Steps to Protect Your Parent with Alzheimer’s

    Once your parent has been diagnosed with Alzheimer’s disease, you must make certain that a plan is in place to protect her and your family. You cannot delay. In order to sign legal documents, your parent must have the mental capacity to know and understand the act which she is engaging in and have a desire to engage in that transaction. Once your parent contracts Alzheimer’s disease, her mental capacity may still be sufficient to sign the documents necessary to create a plan but action must be taken while she still has that capacity.

    You should make sure the following 4 steps are taken to protect your parent and your family.

    1.  The parent must have a Durable Power of Attorney. With this power, she names a representative/agent to make decisions on her behalf. A Financial Power of Attorney allows the representative to make financial decisions for her. The Medical Power of Attorney gives the representative the authority to make medical decisions. In some states, the Medical Power is identified as a Health Care Proxy. Since these powers are specified as “Durable,” they will still be valid if the individual is no longer mentally competent to make these decisions.

    It is important that the parent select someone to have this power that he or she can trust and is easily accessible to help with financial and healthcare decisions. It may be one of the children, a close friend or adviser. A successor should also be named to take over the responsibility if the first person is no longer available.

    2. Each parent should also have a will drafted specifying who should get their property at their death.  Again, they must have the mental capacity to approve such a document. That means they must know who their family members are, what assets they have and to whom they want them passed. If they do not have a will, the state they live in will determine how their assets are to be split up.

    3. Your parent should also have Advance Directives in place. Advance Directives are documents that tell the Alzheimer’s patient’s  family members, caregivers, and doctors what their end-of life-choices are and what health care they want to receive. The family and healthcare professionals are expected to act in accordance with these wishes. Advanced Directives include a Living Will. The Living Will is a document that a person uses to control their medical care if they become mentally incapacitated and can’t make end-of-life health care decisions.

    The Living Will should include a statement that if the person is mentally incapacitated, certain instructions should be followed to provide medical treatment to them. It should also state when life-sustaining treatment should be terminated. If a patient contracts Alzheimer’s disease after completing a Living Will and is in the late stages of the disease, there is a question if medical treatment can be denied in accordance with the document. But although Alzheimer’s is an irreversible disease, it is not defined as a terminal illness. When a person dies, they do not die as a direct result of Alzheimer’s but as a result of another complication such as pneumonia.

    4. Your parent must also have A DNR or do not resuscitate order on file with her care providers. A DNR must be signed by her physician. It is an order from that physician to hospital staff and emergency medical services professionals stating under what circumstances that they do not perform medical intervention if your parent is dying. At any point, if your parent is still “competent,” your parent or his or her representative can revoke a DNR. The verbal wishes of a competent patient always supersede a DNR.

    If an Alzheimer’s patient does not have a Durable Power Attorney named or does not have a Living Will, it will often fall on the courts to determine who has the ability to make medical or financial decisions for that person. This is often a very time-consuming process that can cause excessive delay in making important decisions. It is very important that family members make certain that Alzheimer’s patients put these documents in place while they still have the mental capacity to do so.

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    Legacy vs. Inheritance. Which is more important to your parents?

    The Allianz American Legacies Study found that baby boomers and elders view the concepts of legacy and inheritance differently. According to the study, a true legacy is a combination of emotional and financial elements, while an inheritance is purely financial. The difference between an inheritance and a true legacy is clear and distinct, though the terms are used interchangeably and there is little evidence of an agreed way to approach either. Boomers indicate they prefer to preserve their parents’ memories than receive a financial inheritance, while elders believe their boomer children are more interested in money.

    Elders are underestimating the importance of their non-financial legacy to their children. They mistakenly think financial assets and real estate are more important to their children.

    Thirty-nine percent of elders say it’s very important to pass along their financial assets or real estate to their children, while only 10% of boomers see that as a priority. Boomers think knowing their parents’ future wishes are the most important part of their parents’ legacy.

    Sixty-five percent of boomers say it’s very important that they receive instruction on how their parents’ wishes (about their family/death/estate) should be fulfilled.
    Thirty-five percent of elders say it’s their obligation to leave an inheritance to their children. Seventeen percentof elders feel their children are counting on an inheritance, but only 4% of boomers are. Twenty-two percent of elders with children feel they owe their children an inheritance, but only 3% of boomers feel the same.

    Have you had a conversation with your parents regarding the legacy they want to leave behind? Have you asked them how they want to be remembered? Are there traditions and family practices they want continued? Are their personal items that they cherish and want passed on to certain members of the family?  Are their certain charities or religious organizations that they want to be remembered by? You can open the conversation by asking your mom or dad, “How do you want the family to remember you after you are gone?” Then just sit back and listen.

    For more information on The Allianz American Legacies Study, visit http://www.allianzlife.com or contact Neil Grace at (202) 530- 4558.

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    What’s Important to Mom and Dad

    For the last few years I have been focusing a lot of my time and energy on helping baby boomers begin to communicate in a meaningful way with their elderly parents. As a financial adviser I saw too many situations where families didn’t talk about crucial issues until there was a crisis in the family. As a result I wrote a book entitled,  Can We Talk?  A Financial Guide for Baby Boomers Assisting Their Elderly Parents.

    I’ve also spent a lot of time doing research on what is really important to the older generation. I learned a great deal from Allianz Life’s work with elders. They engaged Age Wave to design a study of boomers and their elderly parents to find out how they dealt with important financial issues that impacted both generations. This study, The Allianz American Legacies Study, made some very interesting discoveries. Harris Interactive, who conducted the study, learned that boomers and their elders were very uncomfortable discussing the topic of leaving an inheritance but both generations embraced the idea of the parents leaving a legacy. They learned that families want to capture all facets of the elder’s life, including their family traditions and history, their stories, values and wishes..

    David Solie, in his book, How To Say It To Seniors, came to similar conclusions. He learned that two things are very important to seniors. First they want to stay in control of their lives as long as possible. Second they want to discover their legacy, that which will live on after they are gone. Control seems to slip away from them each day as they start to deal with health issues and their friends and colleagues slip away.  As they try to maintain control of  their lives, they become aware that they must also learn to let go. They begin to review their lives, look at what has happened over the years and assign meaning to these events. This “Life Review” continues almost daily. It is a relentless conscious and unconscious process that they are immersed in for the rest of their lives.

    How can you help your parents discover their legacy? When they tell you stories, pay close attention, especially when a story is being repeated several times. There is often an important message here. Appreciate the details of the story and listen to them carefully. Be alert to the values that the story describes. Ask open-ended questions such as, “I know how important Uncle John was to you, Mom, but I never realized how much his loss affected you, What was your life like with him when you were growing up?”

    In these conversations you’ve got to be patient and understanding. But if you listen carefully, you can help your mom or dad sort out their lives and discover what their legacy will be.

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    The Wall of Love

    One of my very best friends and clients recently discovered that the breast cancer she had beaten 22 years ago had returned. She informed me that her doctor had discovered that the cancer had spread to her lung, back and bones and was inoperable and untreatable. She wound up in a rehab center after she broke her wrist in a fall. Her small but comfortable room had blank walls and one window with a view of the parking lot. When her daughter arrived she remarked, ”No way! It’s small. It’s bare and I thought I didn’t feel good here. I knew she didn’t.”

    So her daughter  decided to do something about it. She sent out an email to all her mother’s friends, family and former parishioners (she was a retired minister). She wrote,”I need your help. I want to fill the wall with all of you, The Wall of Love.” Her mother had remarked that she had lost connection with people. The daughter replied. “We need to remove that feeling by showing her that she is surrounded with love and support.”

    The response was amazing. Pictures started arriving from couples she had married, parishioners she had counseled, people she had worked with and children she had taught in Sunday School. Her daughter added some pictures from her and her husband’s past, their wedding pictures, vacation photos and other memorable events. Now all the walls are covered from floor to ceiling with pictures and artwork from all the people who love her. She commented, “I wake up in the morning , look at the walls and see my life.”

    When I met with her , she asked me if I would be a part of her memorial service. She  wants it to be a celebration of her life. She mentioned that she wanted everyone in the church to join hands and form a big circle of love. In addition she wants to have a special part of the service just for children. She told me she has her music picked out. I looked her straight in the eyes and asked her, “How do you want to be remembered? What is the legacy you want to leave behind?” She looked over my shoulder at the hundreds of pictures covering the wall and gestured. “This is my legacy. These people are my legacy.”

    Is there someone in your life, perhaps your mom or dad , who has lost touch with all the people who care about them? Wouldn’t it be wonderful if you built them a Wall of Love? Surround them with all the pictures of people they have known in their lives, that they have touched or have touched them. Surround them with love.

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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.