Archive for the ‘Resources’ Category

November is National Family Caregivers Month

Posted on: November 8th, 2016 by Jamie

November is National Family Caregivers Month

Family CaregiversBeing a Family Caregiver is hard work. I know this from experience. Family Caregiving is both deeply satisfying and stressful. It can be physically demanding and emotionally draining. You are with a loved one but often feel alone. Then there is the financial piece: this is not a paid position and there are no sick days or health insurance. When providing this unpaid care, your own financial future is at risk since zero contributions are going into social security or a retirement fund. Family Caregiving is a full-time invisible job, and for many, it may be in addition to working another full-time job.

I want you to know that you are not alone. There are resources for you, ways to connect with others, and advocacy happening on your behalf. I am hopeful that things will get better, and as a nation we will come to embrace the hard work of Caregiving. I hope that you can take care of you. One simple thing that was helpful to me was to take a walk, every day if possible and sometimes with a friend. Here are three resources, in their own words, you need to know about. Please carve out the time to explore them.
Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.


Caregiver Action Network is the organization that chooses the theme for National Family Caregivers Month annually and spearheads celebration of NFC Month nationally.

Celebrating Family Caregivers during NFC month enables all of us to:

• Raise awareness of family caregiver issues

• Celebrate the efforts of family caregivers

• Educate family caregivers about self-identification

• Increase support for family caregivers

The theme for National Family Caregivers Month November 2016 is “Take Care to Give Care”.


Next is The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Their mission: Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance is dedicated to improving quality of life for families and their care recipients through research, innovation, and advocacy.

And last but not least is the Family Caregiver Alliance. Founded in the late 1970s, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. It began as a small task force of families and community leaders in San Francisco who came together to create support services for those struggling to provide long term care for a loved one who did not “fit” into traditional health systems: adults suffering from Alzheimer’s disease, stroke, Parkinson’s, traumatic brain injury and other debilitating disorders. The diagnoses were different, but the families shared common challenges: isolation, lack of information, few community resources, and drastic changes in family roles.

The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving. FCA, as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy.

Back to School With Alzheimer’s

Posted on: September 27th, 2016 by Jamie

Alzheimer’s in School

back to schoolIt’s September – school is back in session and I recently came across a few articles I want to share. The first, from Colorado Public Radio about intergenerational learning where a group of seventh graders in Denver were involved in a service learning project featuring seniors with Alzheimer’s.

The second article is within the first one as a link to England’s Intergenerational Schools Project. In 2012, the UK Alzheimer’s Society began working on the Dementia4Schools Project as part of the Prime Minister’s Challenge on Dementia. The project has become a comprehensive (and accredited) model for education in the classroom and in the community too. There are now hundreds of schools in England termed “dementia-friendly”.

The third features an inner-city charter school in Cleveland where residents of a local retirement community, including those with Alzheimer’s, are volunteers.

These are the facts:
• More than 5 million Americans are living with Alzheimer’s and that number is growing fast.
• Every 66 seconds someone in the United States develops the disease.
• One in nine people age 65 and older has Alzheimer’s disease.
• It is the 6th leading cause of death in the U.S. and is the only disease among the top 10 causes of death that cannot be prevented, cured or even slowed. It is the 6th leading cause of death here.

Integrating Alzheimer’s education into the school curriculum makes so much sense, as we can see from the facts above, Alzheimer’s affects almost everyone in the U.S. directly or indirectly. Through education, our children would develop compassion and empathy while removing the isolation or stigma that having a family member with Alzheimer’s might otherwise cause. In addition, students would learn valuable social skills and create connections with a different generation. These connections would also benefit the older participant.
Resources for Kids (and You)

Even though we do not have a call to action here in the United States to educate our kids about Alzheimer’s in school, there are resources for you, your family and beyond. These are from the Alzheimer’s Disease Education and Referral Center at the National Institute on Aging. Here are videos and resources for children and young people from the “Life with Alzheimer’s Disease” section of the Alzheimer’s Association website. Use the left column navigation to select books and videos by age.

Back to the facts: unfortunately, by 2050, someone in the United States will develop the disease every 33 seconds and the number of people age 65 and older with Alzheimer’s disease may nearly triple, from 5.2 million to a projected 13.8 million, barring the development of medical breakthroughs to prevent or cure the disease. With this in mind, we owe it to every citizen to increase awareness and understanding for those moving through the stages of Alzheimer’s and their families, friends, neighbors and communities.

The Cycles of Life Part 7

Posted on: September 13th, 2016 by Jamie

the Cycles of LifeThroughout these Cycles of Life posts, I have mentioned “list” several times. In this age of technology, I must admit that I am a fan of good old-fashioned paper. Don’t get me wrong, I love my smart phone and use it all the time but I also have a binder and a notebook for each of my parents. I find the binder is very helpful at doctor appointments and especially during a hospital visit or stay. The binder allows me to add, maintain and find their health care information easily plus I don’t need wi-fi or a data plan to use it.



Each binder includes: name, address, and phone number(s), complete emergency contact information, copies of health insurance information, complete list of all health care providers and their contact information, list of current medication(s) including what the medicine is for and list of medical issues/concerns. I also keep copies of the advance directive and the DNR/COLST in each binder. I divide my binder into sections: by each health care provider, medication and pharmacy information and hospital visits. For regular doctor appointments, the after-visit summary is printed and placed into the binder along with any other information/notes from the visit. This is what works for me. If you help with your loved one’s with their finances, the binder also becomes a valuable tool for cross-referencing medical bills and insurance statements with doctor visits, etc.


For hospital visits and stays, I cannot stress this enough: write everything down. Begin the minute you walk in the door. Use whatever method works for you, paper or electronic, but do it. If you have entered via the ER and your loved one uses Medicare as their primary insurance, make sure you are aware of their hospital status: “inpatient” or “outpatient”. Even if they stay in the hospital overnight, they may still be considered an “outpatient” if they have not been admitted. This distinction is important to know so you need to ask. Here is a Medicare publication that helps define these terms and explain how this relates to coverage.


Time usually moves at the slowest pace you have ever experienced during a hospital stay. I keep track of the room number and name of the floor the room is on (patients are moved around), the name of the doctor overseeing the care, how often and when is that person around, will that person change (weekly or daily) and if so what is the name of the next person coming on. I always write down the name of anyone I speak with and what their position is. I ask what tests are being run, what the tests are for, when the test will be run, when the results will be ready, names of medications that have been given, what the medicine is for, what the diagnoses is, how certain they are, what other specialists are being called in on the case and why, and what happens next. Take as many notes as you can in the moment and copy them over as needed- did I mention that time moves very slowly at the hospital?

I also research what I can online and write down any questions that arise from my research. I am guessing doctors probably dislike Google however the internet can be a valuable tool if you are thorough and diligent with what you take away from it. When you get a chance to actually speak with the doctor, you want to be prepared as time is usually short and you need to maximize that time. I have to add that most health care providers chuckle when they see my binder BUT they take me quite seriously. In addition, you may have to advocate for your loved one. If you receive conflicting information, you can give specific examples and ask for clarification, over and over if need be. Lastly, things change, sometimes rapidly. There is a lot of information to manage and writing it down is a great way to keep up with it.

During a hospital stay the nursing staff is an exceptional resource for you; develop a positive and respectful relationship with the nurses and LNA’s as they do the majority of the actual care. Communicate information about your loved one to them, they can utilize it to provide better care and patient cooperation. If your loved one has any issues, you can help resolve them. As with all aspects of care, communication is key.

If you are not able to go to the hospital, write down everything you learn over the phone and be very assertive about being kept in the information loop. The doctor will call you when their schedule permits so if your information and questions are at your fingertips, it will be a more productive conversation. You may have to call many times each day, always try to speak to the nurse caring for your loved one as they know what is going on. Everything from above applies. Be patient, determined and kind-it will go a long way. Hospitalizations are just another part of the cycle, approach them with a strategy and it should help. Knowledge is power and allows for better planning and support.



The reality is that my binder system also allows me to have some control or at least to create the illusion of having some control over a situation where I have no control- my loved one aging and their health declining.

The Cycles of Life Part 6

Posted on: August 26th, 2016 by Jamie

The Cycles of Life 6For some people, the financial planning piece is the hardest part. For others, the health care piece is more difficult. You probably have a good idea about how your loved one feels. Either way the health care planning is equally as important, especially if there is a chronic illness present. Again, be gentle, yet firm; be empathetic yet realistic; be compassionate yet solution oriented. Be kind and be patient, this is hard. Communication continues to be the key/foundation to knowledge and knowledge is power.

If you have been following the previous posts, you already have created the foundation for the “official” health care planning paperwork. All of those ongoing conversations with your loved ones about their health and future goals should hopefully make this a bit easier. Now it is time to convert those conversations to paper on an Advance Directive for Health Care. It may be called something different where you live. Documents and laws vary state to state and typically a lawyer is not needed to complete it.
Another document to fill out is a DNR (Do Not Resuscitate)/COLST or POLST (Clinician or Physician’s Orders for Life Sustaining Treatment) Order. This is the Vermont DNR/COLST with instructions. Here is a comprehensive tip sheet from the Family Caregiver Alliance website regarding these documents.


I find the Vermont Ethics Network booklet entitled Taking Steps: Planning for Critical Health Care Decisions very helpful as it provides thorough explanations and instructions plus worksheets to help gather thoughts and feelings. Their website also has several forms you can download. They provide an overview of the basics for health care decisions and advance directives here.


Ultimately these discussions are truly about end-of-life issues. If you need additional resources to help you and your loved ones you may want to check out The Conversation Project:

“The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care.
Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain.
It’s time to transform our culture so we shift from not talking about dying to talking about it. It’s time to share the way we want to live at the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves. 

We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people we love, before it’s too late.

Together we can make these difficult conversations easier. We can make sure that our own wishes and those of our loved ones are expressed and respected. If you’re ready to join us, we ask you: Have you had the conversation?”

In Vermont, we have a great resource that partners with the Vermont Ethics Network called Start the Conversation. For New Hampshire, they are here. These organizations offer downloadable conversation starter kits plus videos and lots of tips and good information. The Conversation Project also has a new resource for families and loved ones of people with Alzheimer’s and other forms of dementias.

No doubt these are difficult conversations to have BUT it is imperative you have them and continue having them as needed because things change. Once these documents are finished everyone will have peace of mind from knowing legal matters and medical preferences are spelled out. You won’t have to make a decision in crises-mode because you have been empowered to make an informed decision based on your loved ones wishes and goals.
After seeing your aging loved ones completing these legal and health care planning documents, you and your spouse need to do them as well. You now know just how critical they are. Update them as you yourself age and begin to have discussions with your children (if appropriate, of course) about your wishes and goals. As Start the Conversation wisely says, 

“Planning for end-of-life care before it becomes a worry is as important as all the other life plans you have made. Having a plan in place in advance makes it easier for you, your doctor and your loved ones if you are unable to tell them your health care choices because of an injury or serious illness.
Every moment is precious-especially at the end-of-life. Starting the conversation early can ensure that your choices are heard. It also means that when time becomes short, it can be spent doing what you enjoy most and not making last minute decisions. Talk about your wishes while you are in good health so you will be prepared. A health crises can happen to anyone at any time. Don’t wait. Start the conversation today. It’s a gift.”

The Cycles of Life Part 5

Posted on: August 16th, 2016 by Jamie

The Cycles of Life 5The next stage of early planning involves Important Documents-yes, the legal paperwork otherwise known as estate planning. It is understandable why we put off these conversations-they may feel more intrusive to your loved ones because they involve money and their belongings. In addition, they will have to imagine the end of their life, another bummer of a conversation. Unfortunately, they must come to terms with it. Explain that this process gives them control; they will be in control over their assets and property, in control of their health care by expressing their goals and wishes – especially regarding their quality of life and ultimately in their passing. Fortunately, there are many resources to assist you in having these conversations and helping them come to terms with the future.

The Lawyer Stuff

Please seek appropriate legal advice as I am not a lawyer and laws vary from state to state. The most basic legal documents needed are a will, a durable power of attorney (POA) and a durable power of attorney for health care. The will deals with the distribution of one’s estate (property). Without a will, the state can select heirs and divide property; this can be costly and take a long time. The durable power of attorney is legal documentation that transfers decision-making authority to a designated person and continues that authority in the event of incapacity. The POA for health care gives another person legal authority to make medical decisions in the event of incapacity. This may include an authorization for release of protected health information under HIPAA. Other legal forms and documents may be advisable or necessary. All legal documentation must be prepared while your loved one is still competent. Estate planning documents should be kept in a safe and accessible location as well as distributed among family members and other key people as needed. Again, please seek professional legal advice.

This is a comprehensive estate planning tip sheet from the Family Caregiver Alliance website. It contains a lot of information but you (hopefully) have the luxury of time.

I think it is a good idea to use a lawyer who specializes in elder law; you can search for one who is a member of the National Academy of Elder Law Attorneys. Some may offer free seminars, a good introduction into the intimidating world of estate planning for you and your loved ones.

Here is everything you ever wanted to know about HIPAA.

The lawyer stuff dovetails nicely with the health care paperwork as it is all about planning and really thinking about the future. Yes, it is a pain to go through the process but it truly is time (and money) well spent. It is a very important investment so your loved one remains in control of their life and I believe they will be grateful that you made them persevere.

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