Amy refers to the work of Elisabeth Kubler-Ross and her groundbreaking book on dying, “On Death and Dying”. It was the first time that anyone had studied the emotional process of someone’s end of life. Kubler-Ross stated that there were five steps to the dying process: Denial, Anger, Bargaining, Depression and Acceptance. Amy states that we often infer that these five stages are also the five stages of grief. But she points out that until someone observes these fives stages in a loved one they cannot really begin grieving.

And grief often does not progress in a linear form. It can become a roller coaster, not merely a series of steps. Sometimes people skips steps in the process or they may experience more of one than the other. They may not become angry at all or they may become extremely angry and stay that way for awhile. Psychologists are now talking more about behaviors that people exhibit than stages in the grieving process. These behaviors may include shock or numbness, sleeplessness, shortness of breath, depression, guilt, or withdrawal. All of these are normal.

The Center for Grief and Healing in Boston, www.griefandhealing.org points out that there are a number of misconceptions and myths about grief. They include:

The pain will go away faster if you ignore it.
It’s important to be strong in the face of loss.
If you don’t cry it means you are not sorry about the loss.
Grief should last about a year.
Moving on with your life means you’re forgetting about the one you lost.
Friends can help by not bringing up the subject.

None of these statements are true. Each of us experiences grief in a personal, unique way. Trying to ignore your pain or keep it from surfacing will only make it last longer. Showing your true feelings will help you and those around you. There is no right or wrong time frame for grieving and you can hold on to your memory of a loved one and still move on with the rest of your life. You can help a grieving friend by giving them the freedom to express and discuss their grief with you.

This is the time every year that we decide what we are going to do differently in the coming year, how we are going to improve, what we are going to stop doing and what we are going to start. I’d to suggest some resolutions that would be very helpful to you and your elderly parents. Here they are;

Take the time to ask your parents how they met. Bring along a tape recorder or video camera and record their answers.

At the same meeting ask them how they want to be remembered by their grandchildren and great grandchildren. Again record their answers.

Schedule a family meeting with your parents, and your siblings to discuss the critical issues that your family will face as your parents get older.

Complete the Five Wishes Questionnaire yourself and then bring copies to your parents for them to complete. You can find this form at www.agingwithdignity.org

Find out where your parents keep all their important papers and make sure they are safe. These important papers should include wills, durable powers of attorney, health care proxies, life insurance policies and beneficiary statements for all annuities and retirement accounts.

Ask your parents to record the names of all bank accounts and investment accounts   that they have. Ask them to include account numbers as well. Have them keep this information in the same place they keep their important papers.

If your parents have online accounts ask them to record the URL addresses of these accounts, their user names and their passwords. Again keep this info in the same place as their important papers.

If you complete these resolutions you will save your family much heartache and anxiety. You will also provide your parents with peace of mind, knowing that they have done the critical planning that will keep their family together.

The experts have told us that there are two things that dominate the thoughts of our elder parents. The first is the desire to maintain control over their lives, to be able to stay in their home, to continue to drive, to do what they want to do when they want to do it. But as their health deteriorates this is often hard to do. That’s when the second most important thought takes over.  “What will be my legacy? How will my family remember me?”

2600 families with elderly parents were interviewed by the Allianz Insurance Company. 70% of them responded that discussing how the parents would want to be remembered by their children was a conversation important to them. But when polled, only 30% of the families had made the effort to do so.

When was the last time that you asked your parents, “How do you want to be remembered by your grandchildren and great grandchildren? If you are willing to ask that question, close your mouth and just listen. And remember to listen carefully. Drop all your preconceptions of what they will say and how they will say it. Listen with an open heart.

But if you are not willing to open with that question, I suggest you start with a question that everyone is willing to answer, “How did the two of you meet?” That one was a shocker for me. When my mom was moving into assisted living I reviewed with her the important documents  that she held in a metal box. Amongst her legal papers, was an envelope marked “ Letter from Bob while overseas” This was a seven page poem that my father had written on his way across the Atlantic to fight at Normandy in the D-Day invasion. It was in perfect condition. It described how my parents met and their courtship and marriage. I was surprised to learn that my mother, at age 15, ( in 1930) had called my dad to take her to a party after they had met skating that afternoon. (She still denies it to this day).

Once the conversation starts to flow, it’s important discus other areas. Things such as, “ Have you thought about what you want to do if one of you becomes sick? Do you want to stay in the house? Who do you want to take care of you? You might mention what happened in other families when these issues were not discussed. The crisis and confusion that followed.

I’d suggest that you then share with them, a very valuable three page form, “Five Wishes”, a well organized and sensitive questionnaire that gives them the opportunity to write down their health care preferences in many different situations. It can be found at www.agingwithdignity.org. Don’t try to have them fill it out then. Leave it with them and check in with them at another time to discuss their answers. You can also read my book, “Can We Talk?” where I have a created a series of more that 20 forms to gather important information from your parents. You can find it at www.parentcareplanning.com

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.

In addition to concerns about transportation and the availability and cost of help you need to take a serious look at your home. Don’t wait until there is a crisis to make needed improvements. Are your doorways wide enough to accommodate a wheelchair? A narrow wheelchair or walker needs clearance of at least 32 inches.

Do you have your master bedroom on the first floor? If not, are the steps to the second floor steep and is the stairway narrow? You may have to consider some sort of stairway elevator to get up and down at some point. Do you have a full bathroom on the first floor? If so does it  have a walk in shower? Converting a bathtub to a walk-in shower may cost somewhere between $3000-5000. This is most likely one of your most costly changes.

Look at your faucets and cabinet handles. Are they big enough to access with a closed fist? Check out your lighting. Older eyes need more light to see clearly. Check to see that the lighting is good in areas where tasks are performed. Consider the interior colors in your home. If your home has dark floors, keep the walls light. Change the color at potential tripping points, such as where the carpet on the stairs meets the floor. Are there other step ups or step downs in the home where it is possible to trip and fall?

You need to review access to the home itself. In addition to the entry way being wide enough for a wheelchair or walker, is there room to install a ramp for access if necessary?

Do not wait until someone is coming home from the hospital to consider these steps. Look around now and start planning to make the changes that will help you stay in your home.  Most of the suggestions listed above will not only make your home safe and accessible but they will probably increase its market value as well.

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 specialties 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.

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 at their website http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp 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 judgement
Withdrawal from work or social activities
Changes in mood or personality

I noticed some very fascinating research described in the Masters in Healthcare Blog. Their blog has compiled a list of ten speeches on aging made at the TED conferences. These speeches include:
How to live to be 100+
The Future of Medicine
Growing New Organs

You can access these unique speeches at: http://www.mastersinhealthcare.com/blog/2011/10-fascinating-ted-talks-on-aging/

Take a look!

Advance Directives and living wills are not accepted by Emergency Medical Services (EMS) as legally valid forms. If a patient has a living will that states that they do not wish to be resuscitated but does not have an appropriately filled out state sponsored form that is co-signed by a physician, the Emergency Medical Technician (EMT) will attempt resuscitation. This is a little known fact to many patients and primary care physicians that can cause patients to be resuscitated even if their family has given instructions not to do so. Although this law is currently being evaluated for a constitutional challenge it is still in place.

A do not resuscitate document is a binding legal document that states resuscitation should not be attempted if a person suffers cardiac or respiratory arrest. A DNR does not affect any treatment other than that which would require intubation or CPR. Patients who are DNR can continue to get chemotherapy, antibiotics, dialysis, or any other appropriate treatment.

The DNR documentation is especially complicated since each state has its own specific approved form. The DNR form for residents of the State of Arizona is required to be printed on orange paper or it is not valid.  The Massachusetts form can be obtained from the Department of Emergency Services and can be downloaded from the site: www.mass.gov/Eeohhs2/docs/dph/emergency_services/comfort_care_bracelet.pdf  It provides for a bracelet to be applied to the patient’s wrist.

It is imperative that you contact your state health and human services department to determine what form is approved in your state. The form must be signed by the health care proxy ( sometimes called the health care agent) or a durable power of attorney and cosigned by a physician. It is recommended that the original DNR form be kept in safe place, and that copies be kept in places that will be readily available to EMS personnel

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.”