“My Healthcare Wishes” App can save your life!

You may have gone to the trouble of making sure all your family members have completed the important documents that they need if they suffer a critical illness or have a terrible accident. But what if they (or you) are traveling and don’t have the appropriate documents with them? These documents include a durable power of attorney, a health care proxy, a living will and a DNR ( Do Not Resuscitate) order.

Now there is a solution. It is an Apple or Android app for the smartphone called “My Health Care Wishes”. It was created by the American Bar Association. Your family members don’t even need to have the app or a smartphone themselves as long as you have entered the information on your phone and they carry a wallet card indicating this. The information includes: contact information, summary of healthcare wishes, PDF copies of Advance Directives, Medical information, prescriptions, key medical contacts, healthcare proxy information and more.

Let’s say your Mom lives in San Francisco and has a health care directive with end-of-life decisions. You’re her primary proxy and live in Washington DC. She’s on vacation in Boston and rushed to the ER at Mass General Hospital. A My Health Care Wishes wallet card is found stating her proxy has her advance care plan on his iPhone—that’s you! You’re coaching soccer but with one click you are able to email the documents needed to speak with staff to make key decisions. Crucial moments are saved and you’re there in a way never possible before in a medical crisis.

Another example: Your Dad is 89 and your Mom is, 91. He takes her to the hospital and she’s admitted to the ICU but he’s told he can’t make medical decisions for her even if she is incapacitated. She’s his wife and he’s her proxy. What’s this about? He brought the wrong form with him! He brought the Power of Attorney document (POA) that only applies to financial & legal decisions. The Durable Health Care Power of Attorney (HCPOA) is what he needs but it’s at home and no one else is there. He has a cell phone, calls you, his daughter. You have what he needs securely stored on your Smartphone —the document showing your Dad as primary proxy. A click and the correct document is emailed, and your Dad losing little time tells doctors what his wife of 65 years wants.

The medical community is very complex and filled with rules and disclaimers. If you don’t have access to the right legal documents your life or another family member’s life may be in danger. Get on your computer right now and order “ My Health Care Wishes” from the Apple App Store or Google Play!

http://www.americanbar.org/groups/law_aging/MyHealthCareWishesApp.html

Join the War Against Alzheimer’s

losing one’s memory

Nearly half of all seniors who need some form of long term care, from help at home to institutional care, have dementia. That’s from the World Alzheimer Report which came out a few weeks ago.

The report further states that cognitive impairment is the strongest predictor of who will move into a care facility in the next two years. That is 7.5 times greater than people stricken with cancer, heart disease or other chronic ailments.

More than 35 million people worldwide, including 5 million in the U.S., are estimated to have Alzheimer’s. Unless some miracle cure is found these numbers are expected to double by the year 2050.

Unfortunately the U.S. is investing only $400 million a year in Alzheimer’s research. But the disease’s financial toll is estimated to be $200 billion per year. Compare that to the budget of the National Cancer Institute, part of the Department of Health and Human Services. For the last 6 years it has had a budget of $4.9 billion per year.

It’s time for caregivers, advocates and families stricken by Alzhemier’s to come to together to demand a push to end this brain disease. The world’s governments and researchers came together to turn the AIDS virus from a death sentence to a chronic disease and the same force of will can turn Alzheimer’s around.

If you want to get a clear picture of what Alzhemier’s is like from the patient’s perspective I suggest you read Lisa Genova’s book, “Still Alice” or read Dr. David Hilfiker’s blog, “Watching the Lights Go Out.” He is a retired physician who was diagnosed with Alzheimer’s in September, 2012, Lisa Genova’s book is fictional but was based on her experiences working with support groups for people who contracted the disease.

During my 33 years as a financial advisor I met with many couples and strongly recommended that they put together a long term care plan while they were healthy. I was emphatic when I suggested that they consider buying long term care insurance to protect themselves. Most people don’t realize that medicare will not cover the custodial care that an Alzheimer’s patient will require. It is only available for up to 100 days if a person is expected to recover from an illness or injury.

Long term care insurance covers cognitive impairment from Alzhemier’s or other forms of dementia. Time and time again people told me that long term care insurance was too expensive. But all they had to do was to talk to a few of my clients who discovered that the cost of care was much more expensive! Here in New England care in a residence that focused on those with mental impairment averages more than $8000 per month and in some cases is over $10,000 a  month.

The Coming Caregiver Crisis

One third of the families in the United States provide long term care for a disabled or elderly family member. Two thirds of these caregivers are women. And one half of them are working.

These family caregiver are critical for the elderly to remain in their homes  when disability strikes. More than two- thirds (68 percent) of Americans believe that they will be able to rely on their loved ones to meet their long term care needs when they require help, but this belief may collide with the reality of dramatically shrinking availability of family caregivers.

According to an AARP study, in 2010, the caregiver support ratio was more than 7 potential caregivers for every person in the high-risk years of 80-plus.

By 2030, the ratio is projected to decline sharply to 4 to 1; and it is expected to further fall to less than 3 to 1 in 2050, when all boomers will be in the high-risk years of late life.

If fewer family members are available to provide everyday assistance to the growing numbers of frail older people, more people are likely to need institutional care—at great personal cost—as well as costs to health care programs. Greater reliance on fewer family caregivers to provide home- and community-based services could also add to costs borne by family members and close friends—in the form of increasing emotional and physical strain, competing demands of work and caregiving, and financial hardships.

The decades of the 2010s and 2020s will be a period of transition, as boomers age out of the peak caregiving years and the oldest boomers age into the 80-plus high-risk years.

The departure of the boomers from the peak caregiving years will mean that the population aged 45–64 is projected to increase by only 1 percent between 2010 and 2030. During the same period, the 80-plus population is projected to increase by a whopping 79 percent.

It is critical that families begin the conversation now to create a long term care plan for elderly family members. Do not wait for it to become an immediate crisis. The family must have a serious meeting to answer the following three questions.

1. If mom or dad becomes incapacitated, where will they live?
2. Who will take care of mom or dad if they need custodial care? 
3. How will they pay for this care?

The answers to these questions will form the basis for a long term care plan. If family members disagree regarding the answers to these questions, compromises must be made. The entire family must come to a consensus that everyone can live with or risk the disintegration of the family.

Caring for your elderly parents, are you doing it?

It’s a fairly universal assumption that at some point we’re going to have to think about how to look after our parents when they get to an age when they’re less independent than they want to be. When that time comes, we have to consider the options against the time we have available to give them and the cost implications of an increase in service or utilities. Here are some of the ways we can make sure we’re all doing the best we can for our family and other elderly people we know.

Time

Giving your time to your elderly family is priceless when trying to make sure they get the best life possible. In the not-so-distant past, and in many other cultures, it’s expected that elderly men and women would live with their children or younger relatives when they are no longer capable of living independently. This is fantastic for keeping a family together, but it’s simply impossible for some young families to dedicate that much time if they are both working and have lots of commitments- consider that, when this was popular in the past, it was generally accepted that women would stay at home while men worked- alternatives must be used, even if they don’t necessarily want to use them.

Money

If the financial responsibility may fall on the younger members of the family and if that’s the case then private carers and expensive retirement homes may not be feasible. If this is an issue for you then check what kind of organizations are offering the retirement homes to give you a clue on what price and quality of services they will provide. Some charitable trusts offer residential ‘communities’ that focus on building an active and friendly environment for the elderly, and have the charitable status to back them up. These offer fairly reasonable prices and ensure that time and attention will be given where it’s needed, which is great if the problem is a lack of ability to spend time with the older family.

What sorts of things are available in retirement communities?

As these retirement villages are focused on activities and building communities, there is generally a lot to do in them. More conventional things like book clubs are obvious, but there are also more contemporary activities such as tai chi, and if people aren’t quite up to speed with IT skills like email and Microsoft Office programs, there are plenty of classes to help there too.

Make sure they’re happy about where they’re going

Everyone is aware of the negative connotations surrounding some of the more dingy retirement homes, so your elderly family will obviously be included in that. Retirement villages, especially when run by charities dispel those worries, by having an already bustling community that people can see and reference to, meaning that if you really can’t afford the time or money to have your family at home with you, they are by far the best options available.

A Caregiver’s Story (In his own words)

I was suddenly thrown into the role of caregiver on November 21, 2005. This is the day that my wife Heather and I were stunned with the news that she had malignant pleural mesothelioma. Our lives changed from being the happy parents of a three month old daughter to a family thrown into chaos. Plans for celebrating Lily’s first Christmas were replaced with details of Heathers need for immediate treatment.

As the doctor told us about the illness, my wife seemed to be lost in shock and disbelief. She said nothing as we were given three options for finding a specialist who would provide her treatment. The university hospital was nearby and we could choose the convenience of not having to leave the area for her treatment. Although the regional hospital had a great reputation, a developed mesothelioma program wasn’t available. Dr. David Sugarbaker specialized in mesothelioma, but that meant traveling to Boston.

It was then that it hit me that my life had changed as much as hers. Heather seemed unable to respond to the doctor with a decision, too shocked and terrified by the news, so it was up to me to choose her care. I immediately told the doctor “Get us to Boston.” Traveling would be inconvenient, but the specialist seemed our best hope, and I was willing to do anything in the world to help her.

Heather and I had both worked full time up until the diagnosis. After that, I could only work part time because of the time spent making appointments, travel arrangements, and the trips to Boston. Through it all, Lily still needed my attention. Heather, of course, wasn’t able to work at all. The chaos of those first two months was overwhelming. There was just so much to do, and the list continued to grow no matter how hard I tried to accomplish the needed tasks.

This was when I was assailed by the fears of what the future might bring. I had to face that fact that my wife might die and I would be alone to raise our daughter.. The possibility of losing our home and all of our possessions because of lost income and the cost of traveling for treatments to battle the mesothelioma scared me to the point that I started to bawl my eyes out right on the kitchen floor. The added stress of keeping my fears from my wife and young daughter made me feel isolated and alone.

I was slow to realize that we had never been alone. Friends and family stood by us, offering words of comfort and even financial assistance. Support was offered by complete strangers as well. We can’t thank them enough, but it taught me an important lesson that I can share with other cancer patients and their caregivers. Accept the help that is offered. The things to worry about are many, and any relief will reduce the stress so that you’re more able to handle the next task on the list. Emotional support may be the best offer of help. It proves that you’re not alone with your burdens.

It’s not easy to be a caregiver to someone who has been diagnosed with a serious illness. Your life is changed to one full of uncertainty, chaos and stress. It’s a job that you can’t walk away from when you are panicked or overwhelmed. All you can do is hold on to hope, and lean on those who care about you.

Heather is now cancer free, but months of fighting the mesothelioma through surgery, radiation, and chemotherapy took us away from anything resembling a normal family routine. Although as a family we struggled through some bleak times, we never lost hope. With the support of friends, family, and strangers we were able to keep our sanity and work our way through the life challenge that threatened to destroy us.

I’ve learned a lot from being a caregiver to a loved one with a serious illness. Possibly the most important lesson is that it takes strength to let go of pride and ask for help. No matter what the challenge, hope will keep you going, and emotional support keeps that hope alive.

Tending to the needs of my wife and daughter while juggling the medical appointments, travel and normal household responsibilities showed me that I could manage any amount of stress. It also polished my time management skills. I was able to return to school to earn my degree two years after Heather was diagnosed with mesothelioma. Fighting for Heather made me see that I was capable of doing more than I could have ever dreamed.

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.

Time to talk Turkey

Many families gather together during the holiday season. This is the perfect time to have a meaningful conversation with your elderly parents. But many of us have difficulty opening up a serious conversation with them. Let me give you some suggestions that will help to get the ball rolling.

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

How to be by the bedside

• 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.

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 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

A Breakthrough in Home Care

Many seniors want to do everything they can to stay in their homes as they get older. But often they need help to handle various responsibilities including getting to medical appointments, shopping, socializing with friends, preparing meals, and managing things around the house. They usually have two choices to get these services. First they can rely on family members to help them. This is often difficult if their children are working or are not in the immediate area. Second they can hire aides to come to the home. But this can be very expensive. Aides often cost $20 an hour or more and many seniors just can’t afford them.

But a new alternative is emerging. It is a volunteer not for profit organization created by a community to allow neighbors to help other neighbors. Each senior pays a fee to become part of the network. Fees vary by community and services offered . They range from $175 to $900 a year. Community members volunteer to provide most of the services. Discounted fees are available to people with lower incomes.

Beacon Hill in Boston was probably one of the first neighborhoods to offer such a program. Beacon Hill Village was founded in 2001. ( www.beaconhillvillage.org)To be a member you must be 50 or older and live in communities surrounding Beacon Hill.  Services offered to members include:

Referrals to discounted, vetted providers for everything from dog walkers to plumbers
A volunteer to assist you in your home or around town
Geriatric care management for you or your family members anywhere in the US
Preferred access to MGH Senior Health Medical Practice
Rides home from a medical procedure that are required by the hospital/doctor
Personalized grocery shopping—we will drive you or deliver groceries to your home
Discount prescription drug card—complements Medicare Part D coverage
Discounts to all providers: Electricians, plumbers, organizers, personal trainers, massage therapists, homecare specialists

A similar program was recently set up on Cape Cod. It is called Nauset Neighbors (www.nausetneighbors.org) and boasts that “One call does it all”. It is also staffed by volunteers and serves the communities of Brewster,Orleans, Eastham and Wellfleet.

There are now eight open villages in Massachusetts, including similar groups in Falmouth and  Martha’s Vineyard.  There are currently about sixty others nationwide, over 120 in the planning stages and the numbers are constantly growing. Each village is unique to its area and resources.  Nauset Neighbors is part of the Village to Village Network whose aim is to exchange information and experience.