Ailing parents

    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 a good health care agent?

    One of the most important jobs you may ever have is to be designated a health care agent or health care proxy for another person, possibly your parent. In this role you will make heath care decisions for them if they cannot make them themselves. One of the best sources I know of for the forms to designate a health care proxy is provided by www.agingwithdignity.org. Their forms are approved in more than 40 states.

    Aging With Dignity recommends that you do the following things to be a good health care agent/proxy:

    1. Know your loved one’s wishes ahead of time. Ask questions when discussing their wishes with them so that you understand what they want.
    2. Introduce yourself to the doctors and nurses caring for your loved one. Make sure that they know you and know how to reach you. Make sure that they have a copy of the document naming you as the health care agent/proxy.
    3. Ask questions of the doctors and nurses and follow through with them as they are treating your loved one so you know that your loved one’s wishes are being followed.
    4. If you run into problems, ask to speak to the social worker, patient representative or chaplain of the hospital or institution your loved one is in. If a doctor or nurse does not want to follow their wishes, contact the ethics committee of the hospital, hospice, or nursing home.
    5. Be courteous but be firm. Sometimes doctors or their staff ignore a patient’s wishes if the health care agent/proxy doesn’t push for them.
    6. Obtain a HIPPA release form and have your loved one sign it giving you authority to see their medical records. Without it you will be often be denied any information about their condition or health.

    Aging With Dignity provides a document called The Five Wishes, which allows your loved one to specify in detail exactly how they want to be taken care of. It also has a place for them to name their health care proxy/agent. It combines both a living will and health care proxy into one form. Once it is witnessed by two people and signed by the person it becomes a legal document in more than 40 states. Call 1-888-594-7437 or go to the website www.agingwithdignity.org to order the form.

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    How to talk with Mom and Dad

    Opening up a conversation with your elderly parents about important issues can often be a very stressful and difficult task. You know there are certain things you need to talk to them about but you often fear that they might speculate what your motives are. So how do you open up those conversations without embarrassing yourself and upsetting your parents?

    First you must remember that one of their primary concerns ( according to David Solie in his book, How to Say it to Seniors) is maintaining control of their lives. They don’t want to be told that they can’t drive anymore or that they have to move out of their house into a retirement community. Even if these choices are in their best interests, they will be very reluctant to comply if they don’t feel that they have made the decision.

    But you also need to know that you don’t want to wait until its a crisis to approach your parents. In my 30 years as a financial adviser to hundreds of families, I never saw things go well when families tried to make decisions after a loved one was already in trouble. These situations are fraught with emotion and people don’t often think very clearly when things are unraveling.

    Now, while your parents are still healthy (hopefully), plan out what issues you need to discuss with them before you approach them. Try writing them a letter expressing your concerns and thoughts. Don’t give them the letter but use it as tool to explore your own emotions. Narrow down your concerns to be as specific as possible. What are you anxious about? Enroll the ear of a friend or spouse and read your letter to them. Do they think your concerns are legitimate and worth discussing? Finally, listen to the letter as if you were your parents. Where do you think there will be resistance or stubbornness?

    Once you know the focus of your conversation, develop an ice-breaking phrase that you can use  with your parents. Make sure your questions are open-ended and leave room for them to express their opinions. For example,” Mom, recently one of my friends told me her mom was having difficulty keeping up with all the chores around the house. What do you think she should do?” Or, “Dad, can I get your opinion on a couple of things?” Or as simply as “Mom, can we talk?” One of my favorites was “ Dad, how are you enjoying those golden years?”

    Your parents probably want to talk about the same concerns you have, but they just don’t want to upset you or mention things that are uncomfortable. They certainly don’’t want to be told what to do. But by easing into the conversation and creating an environment that is safe, you can eliminate a lot of stress for them and yourself. You’ll also give them the opportunity to age with dignity and peace of mind.

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    Namaste Care: Embracing the Most Vulnerable in Nursing Homes

    Namaste Care is a program designed to improve the quality of life for people in nursing homes or assisted living facilities who are agitated, unresponsive or near the end of life. It is often used with people who have advanced dementia. Namaste, is a Hindu term meaning “to honor the spirit within” and was selected to describe a program that brings honor to people who can no longer tell us who they are or cannot care for themselves without assistance.

    Joyce Simard, a veteran elder-care social worker, founded the Namaste program. She was concerned that some residents were too frail or disoriented to participate in group activities in nursing homes. She noticed that they would often sleep or slump in their wheelchairs near the nurses station all day. She said, “ That’s not quality of life. What they really need is someone to touch them in a loving way” She has written a book entitled, The End of Life Namaste Care Program for People With Dementia.

    Namaste Care takes place in a designated space that helps to create a safe and comforting environment for all who enter, including residents, their families and staff. Hand and foot massage, carefully brushing or combing a persons hair, and moisturizing the ladies faces with “Ponds” cold cream, are a few ways that bring pleasure when done with a loving touch. Resistance to shaving that many men display because they do not realize that they need to be shaved disappears when shaving is accomplished the “old fashioned” way with shaving cream and “Old Spice” after shave lotion.

    Scents of the season are used to provide sensory stimulation.  Flowers that are in bloom, like lilacs in the spring, produce smiles as well as the scent of cinnamon in the fall and winter.  Almost everyone will smile when someone is blowing bubbles or may be wearing an outlandish hat!  Moving arms and legs to music helps keep limbs flexible.  Nourishment and beverages are offered throughout the day so that people with a diminished appetite have more opportunities to eat and drink.

    Namaste programs are being incorporated in facilities around the world. On Cape Cod the Epoch Group has made a very big commitment to the concept. It is now used in all Epoch living centers in Massachusetts and Rhode Island. At Epoch Senior Living in Brewster, MA 20 out of 160 residents may be in the program at any one time. A framed statement on the wall of the Namaste room spells out the Namaste Mission: “To embrace our most vulnerable and provide them with a sense of comfort, calmness and serenity because their lives are still relevant.”

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    How to Be At Your Aging Parent’s Bedside When They Are Very Sick

    When one of your parents is very sick, you may not know what to do or expect. The time you spend with them by their bedside is very important. It is time that you will never forget. You may find it very difficult and very uncomfortable to be there but you will be glad you did it when it is over.

    People are very different in how they handle serious illness. You are just going to have to let them deal with it in their own way. They may just act the way you have always known them or they may seem like a totally different person to you. A lot depends on the type of illness they have and whether or not recovery is possible.

    Your loved one may be afraid of dying, tired all the time, confused, unwilling to have visitors, afraid to be alone, not wanting to talk, restless, depressed, or wanting to talk all the time. None of these actions are unusual. The best thing you can do is to be prepared for the unexpected. Your primary goal should be to make them as comfortable as possible.

    Just being there with your parent is the most important thing you can do. Do not worry about saying the right thing. You may even admit, “Mom, Dad, I don’t know what is the right thing to say to you. I just know that I want to be with you and I am happy to be here.”

    If your parent is sick they may want you to hold their hand, softly stroke their hair, read to them, play some music for them, show them photographs, tell them family stories, listen to them, pray with them or just sit quietly with them. Try not to upset them and assure them that they aren’t a burden to you.

    Be conscious of how long you stay. After awhile you will get a sense of how long is appropriate. If you notice them starting to close their eyes or lose concentration, it’s time to go. In most cases I would suggest not staying longer than an hour. Frequent visits are much more important than long visits. Don’t be offended if they tell you they want to be alone. Having family members visit you requires a lot of energy and can be very draining to those who are ill.

    As difficult as it may seem, imagine that this is the last conversation you may have with them. This will help you say everything you need to say.

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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.