After Dad suffered a series of medical problems, I dropped abruptly into the role of providing accurate information to healthcare providers. Those were scary times with major decisions to make. Unfortunately, I knew very little about Dad’s health issues, medical insurance, and doctors. I scrambled for information through crisis after crisis until I made up my mind to put Dad’s health information into one place – his Personal Health Record.

What is a Personal Health Record?
A Personal Health Record (PHR) is a system you create to manage health information for you or your loved one. A PHR can be a paper based system or you can use a computer based digital system. The paper method is low cost, reliable, and accessible without the need for a computer or any other hardware. A digital system is easy to update. You can carry your PHR with you on a USB drive and print out copies for healthcare providers.

What information should be in a PHR?
To have the information you need for a variety of medical circumstances your PHR should have the following information:

• Personal information – name, address, phone, email, social security number
• Insurance and provider information – include phone numbers and addresses
• Information for emergency contacts
• Current Conditions – condition, date diagnosed, treating doctor
• Current Medications – name of the medication, dose, frequency
• Pertinent Test Results – test, date, results, purpose, measurer
• Allergies
• Immunization history
• Surgical History
• Current Health Risks and Family History
• Information on medical devices – especially implantable devices such as a pacemaker
• Living will and organ donor instructions

One of the main reasons people hesitate to create a personal health record is that they think it’s too time consuming. Starting slowly with basic personal and insurance information, and a medication list, will help almost immediately with each doctor visit or during an emergency. Then gradually add additional information as healthcare providers request it. Soon, you will have the information you need and will start seeing the benefits of all your hard work.

Benefits of a PHR

You will find your PHR helps you in many ways:

• Save time – finding the information you need in one place
• Know that important information is not forgotten
• Increase your sense of control over health
• Promote better health management by using a systematic approach to healthcare
• Avoid duplicate tests
• Support timely, appropriate preventive services
• Ease the transition when changing or consulting a new doctor
• Provide current and accurate information for doctors and the medical team so that their decisions are based on current information
• Verify the accuracy of information in provider records
• Support continuity of care across time and providers
• Improve communication so that it is easier to ask questions, to set up appointments, to request refills and referrals, and to report problems.
• Support understanding and appropriate use of medications
• Reduce adverse drug interactions and allergic reactions
• Have information to manage long distance caregiving
• Provide emergency information quickly and accurately

Creating a PHR
You can create a PHR yourself and store your information in a three-ring notebook. You might find it easier to create your lists on your computer in a word processing program like Microsoft Word. There are also a number of PHR systems available for purchase.

To see the PHR I created for my Dad, visit http://www.atmyfingertips.us.com/

How have you benefited from your PHR?

This Father’s Day will be bittersweet for us. It is the first one without Dad. We are fortunate, though. You see Dad and my sister decided to make a series of recordings. My sister asked questions and Dad supplied the answers. They only recorded three sessions, but Dad’s personality and his presence come through so clearly. Listening to these recordings brings him back. It is like having him here talking with us today.

Question and answer recordings are great projects for your loved one. Reminiscing serves many purposes, especially for older people. This simple activity is low stress and can be done in short periods should your loved one tire quickly. They truly enjoy and appreciate the interest in their life.

This is a terrific project for grandchildren. The grandchild learns about life in an entirely different era. It opens up their horizons and their imaginations. And the grandparent can impart life lessons and instill a sense of legacy. Both the interviewer and your loved one become closer with a better understanding and appreciation for each other. The grandchild may also have the computer skills to save the file, put it in different formats, and even create playlists, CDs, or DVDs.

Recording sessions can provide respite time for you. I was grateful for the time my sister spent on this project with my Dad. It was a rare opportunity to do something for myself.

When starting the project, don’t try to capture everything at once. Creating legacy information is a wonderful goal. But sometimes setting expectations too high or trying to make it perfect gets in the way of actually creating the project. This should be fun and relaxing for your loved one. The information you obtain and the conversations themselves are what’s important.

Simple question and answer recording with your loved one are easy to make. You will need a device to record the interview. Finding a device may be easy since many devices have recording capability these days. Dedicated recorders are small, compact, and inexpensive. To record successfully, you need to ensure that the microphone on the recording device is near the person who is speaking. Once you have your recording, you will need to transfer the recording to your computer. And you will want to make the recording available for others to listen to. A family member or friend may be able to do this for you. Don’t be afraid to ask. The person you ask may be thrilled to be able to help out and become a facilitator for this special project.

If you would like more information, the website Family Oral History using Digital Tools can help get you started.

Happy Father’s Day, Dad. We miss you.

Music has always played a big part in my family life. Mom and Dad met when taking violin lessons as children. Their love of music blossomed into love and marriage. Listening to his favorite pieces always brought Dad great joy.

Knowing how important music was to Dad’s wellbeing suggested to me that music could help to other care receivers as well. In fact, after a quick look on the web, I found recent studies confirm that not only can music sooth and entertain, but it’s also a wonderful tool for helping people with memory impairment. It’s thought that listening to songs enjoyed earlier in life can provide a pathway back to memories otherwise lost. Stroke victims and Alzheimer’s patients have benefited from retained and even restored cognitive functions through music.

Not only can music help people remember past events, but it also helps people build new memories. A recent Boston University study found that using lyrics and music to create small tunes that help people remember new things like medications.

Another music therapy is called melodic intonation therapy. Therapists use this new technique to treat non-fluent aphasia. Often, people who suffer a stroke that causes brain injury have trouble saying what they want to say because the brain’s language network is damaged. This disability is called aphasia. Doctors have known for years that people can sometimes sing words that they can’t speak. Melodic intonation therapy trains people to sing phrases rather than to speak them, thus helping them communicate verbally.

Having learned of the wonderful benefits that music provides, I was very excited to discover that a local organization, Assisted Living At Home, brings music directly to those who suffer from Alzheimer’s disease. Through their charity, Music for Memory, they provide free iPods to seniors with dementia. People donate used iPods. Music for Memory programs the iPods with songs that the senior enjoys. These well-loved songs provoke positive memories from their past. Music for Memory supplies everything the senior needs – the iPod, charger, and earphones.

For more information about donating an iPod or obtaining one for you loved one, visit Music for Memory.

You can learn  more about how music can helps the disabled at:
Live Science – Music-Memory Connection Found in Brain
New York Times – A Key for Unlocking Memories
BU Today - Music Boosts Memory in Alzheimer’s
Speech Recovery and Development Center - Music Therapy can Help Reclaim Language

Has your loved one benefited from music?

In the video below, Oliver Sacks shares his experience of the power of music for Alzheimer’s patients.

Caregivers know a lot about living with chronic illness. After all, much of the care and support we give our loved ones is for chronic illness. When it comes to living with chronic illness, we aren’t alone. AARP shares the following information about chronic illness:

• Chronic illness is the leading cause of disability and death in the United States,
• Seven in ten deaths each year are attributed to such illnesses as cancer, heart disease, diabetes, and stroke.
• About 133 million Americans—nearly one in two adults—live with at least one chronic disease, and more than one in ten have three or more.

It is not uncommon for caregivers to suffer from chronic illness at the same time they are caring for their loved one.

A new program for managing chronic illness
A good deal of the advice offered for dealing with chronic illness is about medications and surgery. Often overlooked, however, is help in learning how to make good choices and develop good habits. This knowledge would make dealing with the illness more manageable and provide a better quality of life. That’s why I am very excited by an online program being offered to help people discover how to manage their health and maintain active and fulfilling lives while living with chronic illness. Better Choices, Better Health is a 6 week program based on Stanford University’s Chronic Disease Self-Management Program. The National Council on Aging (NCOA) is collaborating with Stanford University to bring this effective and proven program online.

What you can learn
In the Better Choices, Better Health program you will learn techniques for dealing with problems associated with a wide range of chronic conditions:

• The appropriate use of medications
• How to communicate effectively with family, friends, and health professionals
• Healthful eating
• Making informed treatment decisions
• Disease-related problem solving.

How Better Choices, Better Health works
A pair of trained facilitators, at least one of whom has a chronic health problem, leads the six-week workshop through a dedicated, secure web site. The workshop is highly interactive (although sessions do not require real-time attendance) by way of e-mail and message boards. Approximately 25 individuals participate in each session, building their confidence and self-management skills through action planning, sharing experiences, and mutual support. Participants log on at their convenience two or three times each week for approximately two hours. There are no requirements that participants log in at the same time.

Helping a loved one participate in the program can bring better understanding and better management of chronic illness. Caregivers who also suffer from chronic illness can gain the same benefits for themselves. Participating together can bring mutual understanding and support.

The program is free and is open to anyone. You will find more information about the Better Choices, Better Health program here. To register for the program go to https://selfmanage.org/BetterHealth/SignUp.