PBS Documentary Tonight and Article on Alzheimer’s Research

There’s a new PBS documentary airing tonight (January 25th) on Alzheimer’s Disease.  It’s a one-hour urgent call to action called “Alzheimer’s: Every Minute Counts.”  The point of view of the documentary is that we haven’t given enough resources to Alzheimer’s research.

There’s an article from Next Avenue about the documentary.  See:

www.nextavenue.org/battling-threat-of-alzheimers/

‘Every Minute Counts’ in Battling the Threat of Alzheimer’s
A new PBS documentary airing Wednesday is an urgent call to action
Next Avenue
By Emily Gurnon, Health & Caregiving Editor
January 23, 2017

The article is an interview with Dr. Rudy Tanzi, an Alzheimer’s researcher who appears in the documentary.  He is asked about the current state and level of AD research; genetic testing; and things you can do to lower your risk of AD (Mediterranean diet, 7-8 hours/night of sleep, 10K steps/day of exercise, and stress reduction).

Robin

“Exercise Can Be a Boon to People With Parkinson’s” (NYT)

Here’s an interesting article in today’s New York Times about the value of exercise for those with Parkinson’s:

www.nytimes.com/2017/01/23/well/exercise-can-be-a-boon-to-people-with-parkinsons-disease.html

Well
Exercise Can Be a Boon to People With Parkinson’s Disease
Personal Health
New York Times
By Jane E. Brody
Jan. 23, 2017

I don’t think there’s any solid evidence that exercise slows the progression of Parkinson’s, but of course exercise has a host of benefits – physical and mental.  The same can certainly be said for all the disorders within Brain Support Network.

If you live in Northern California, check out this list of Parkinson’s-specific exercise classes:

parkinsons.stanford.edu/exercise.html

Many are appropriate for those with LBD, PSP, CBD, and MSA.

If you live outside Northern California or can’t leave your home, consider Parkinson’s-specific exercise videos.  You can find a list here:

parkinsons.stanford.edu/exercise_videos.html

Robin

“Documents Prepared Families Cannot Ignore”

This blog post from A Place for Mom (aplaceformom.com) describes the financial, healthcare, end-of-life, estate planning, and other essential documents every person must have.  A local support group member sent this to me recently.

Robin

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www.aplaceformom.com/blog/documents-preparedfamilies-cant-ignore/

Documents Prepared Families Cannot Ignore
By Jeff Anderson
APlaceForMom.com
January 12, 2016

Our life is bookended by essential documents. We’re given a birth certificate after our first breath and a death certificate after our last. In between, we accumulate innumerable other certificates, contracts, deeds, diplomas, directives, licenses, registrations, titles and so on.

By the time we’re elderly, we have accumulated hundreds of official documents of all shapes and sizes. But which of these are important?

When You Need Official Documents

Many situations can require documents and these situations tend to be unexpected. That’s why it’s wise to proactively locate and organize these materials rather than waiting until some incident or situation makes them necessary.

Someone dealing with a crisis involving a parent certainly doesn’t want to be in a dusty attic, frantically shuffling through a box of papers, or at the back of a line in a government office, trying to find or replace a critical document that has gone missing.

Legally-binding paperwork and forms related to end-of-life are a large part of our list of important documents, but these documents can be required in many other situations, including when an elderly person:

• Moves to a senior community
• Is hospitalized
• Is displaced by an emergency or natural disaster
• Applies for state, federal or veteran benefits
• Sells a home
• Becomes involved in litigation

It’s important to note that not every document listed below will be relevant to you or your senior loved one. So, be sure to consider your own unique circumstances when you work to locate, organize and assemble important documents.

Privacy Need Not Be Compromised

People naturally desire a degree of privacy, particularly about their finances. But, parents usually avoid talking about money with their children, even when the children are adults. These secrets can lead to stress for whole families in cases when an unprepared elderly parent develops memory loss, falls ill or passes away suddenly.

All people, including the elderly, have a right to privacy, but seniors will want to make sure their loved ones have access to crucial information in a serious emergency. Tiffany Wise, Director of Partnership at A Place for Mom, offered some practical advice to families regarding parents who are reluctant to share personal information:

“Many seniors are passionate about keeping their financial information private, even from close family members. Problems arise when a family member is not aware of bank accounts, assets, and pensions, or at least where to find that information. Without a clear picture of the senior’s finances, the family may think that their loved one cannot afford the care they need or the care they feel their loved one would choose for themselves. Keeping exact dollar amounts private until absolutely necessary is okay, but make sure you have a lock box or folder that is organized and accessible to the person who would help arrange for your care if you are injured or ill.”
Privacy and preparation are not mutually exclusive. You can work with your parents to prepare this information while still respecting their privacy.

The Documents Prepared Families Cannot Ignore

Financial documents can be crucial in many instances. Tiffany Wise notes, “If a family member cannot locate important documents like tax returns or bank account information, it could delay or even cause the senior to be denied benefits like Medicaid or VA benefits.”

For example, a senior applying for Medicaid or veterans benefits is required to demonstrate their financial need and will have to provide comprehensive documentation of past and present finances. The approval process for such benefits can be stalled for months because of a single missing piece of paperwork. A stalled applications for benefits is more than a mere inconvenience; stalled applications mean delayed assistance that can greatly risk an already frail elder’s health and bring about serious financial hardship to the senior’s loved ones.

Furthermore, the heirs of seniors who pass away inevitably need bank records to locate their deceased loved one’s savings. Hundreds of millions of dollars sit idle across the country in bank accounts of people who have been dead for years, sometimes many decades. This happens when loved ones aren’t in the loop. This is unlikely to occur with a senior’s primary bank account, but if a senior has multiple accounts, the risk of an account being overlooked is greater.

Vital financial documents include:

• List of all bank accounts
• Pension documents 401(k) information, and annuity contracts
• Tax returns
• Savings bonds, stock certificates or brokerage accounts
• Partnership and corporate operating agreements
• Deeds to all property
• Vehicle title
• Documentation of loans and debts, including all credit accounts
• Durable financial power-of-attorney (financial proxy)

Healthcare Documents You Need

If a senior becomes incapacitated or can’t communicate, it’s vital that the senior’s wishes be stated in a living will (also known as a healthcare directive), and also that someone with the authority to represent the senior has been designated. Melissa Pratt, a Senior Living Advisor with A Place for Mom explains:

“When you have an older parent, you never know when you might need to visit the hospital. Being able to quickly grab official paperwork such as durable power-of-attorney or an advanced-health-care-directive can eliminate lots of stress at the hospital. Doctors want proof that you are the decision maker.”

What’s more, having quick access to a senior’s medical history can be lifesaving during a medical emergency, as a single piece of medical information could be the key to effective treatment. Medical records are also necessary when applying for benefits, including veteran benefits assistance and Medicaid. They are also needed when moving to a senior community.

Important health care documents include:

• Health care proxy (durable health power-of-attorney)
• Authorization to release health-care information
• Living will (healthcare directive)
• Personal medical history
• Insurance card (Medicare, Medicaid, Independent)
• Long-term care insurance policy

End-of-Life and Estate Planning Documents You Need

When a cherished family member dies, it’s a sad and painful personal loss; but this pain can be compounded by the difficulty and stress of sorting out our loved one’s affairs. We can save ourselves or our loved ones this burden by making sure that documents related to estate planning and end-of-life have been drawn up, are up-to-date, and are easily available. For example, when a senior passes away without having drafted a will, families can be thrown into legal and financial chaos. In some of the saddest situations, the deceased senior’s children sue one another in a a bitter fight over their parent’s estate.

Essential end-of-life documents include:

• Will
• Trust documents
• Life-insurance policies
• End of life instructions letter (regarding wishes not covered in will, for example regarding memorial, or items not covered in the will)
• Organ donor card

Other Must-Have Documents

Marriage certificates and military records are required when applying for veteran benefits such as Aid and Attendance, and are also required in applications for many kinds of state and federal assistance. Seniors may even need their birth certificate on occasion. For example, some states now controversially require that voters have photo ID. If a senior doesn’t have photo ID, and many don’t, a birth certificate is usually needed in order to get one.

Here’s a list of some other essentials:

• Marriage papers
• Divorce papers
• List of online usernames and passwords
• List of safe deposit boxes and the location of their keys
• Military records
• Birth certificate
• Driver’s license
• Social Security card
• Passport

Finding, Organizing and Assembling Essential Documents

It’s not enough to merely have these documents. It’s important that they be accessible.

Experts recommend that seniors or their loved ones keep all these important documents in one master folder or box. The folder should be kept in a safe place, for example, in a safe deposit box, fire safe, or with an attorney. Our quick and handy Essential Document Locator Checklist has helpful advice about assembling and organizing the essential documents we’ve reviewed.

For more information about approaching this conversation with your family and determining which documents are necessary, read “An Elder Law Attorney Perspective on Aging Parents.”

“Last Dance at the Savoy” – memoir by a caregiver

Recently I asked if Brain Support Network super-volunteer Denise Dagan could read the memoir Last Dance at the Savoy, by actress Kathryn Leigh Scott (kathrynleighscott.com).  I was honored to meet Kathryn last year at a progressive supranuclear palsy (PSP) conference in the local area.  Her husband had PSP.

Below, Denise shares her review of the book and some highlights.  The symptoms and behaviors mentioned below are found in most of the disorders in Brain Support Network.

Robin

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Denise’s review of
“Last Dance at the Savoy”
by Kathryn Leigh Scott

Robin asked me to review this memoir.  The diagnosis is PSP, but it is about caring for the love of your life until the very end.

Kathryn says she wrote this book because, when her husband was diagnosed with PSP she, “…yearned for someone to take my hand and figuratively walk me through the difficult times I knew were ahead.”  She’s done that for you in spades by beautifully sharing her own story!  She’s also included a good resource guide.

Kathryn is a good writer.  She spends the first several chapters introducing herself and her 2nd husband, Geoff.  She doesn’t just run through the history of how they met and their respective professions, but invites you to witness romantic moments, annual jazz pilgrimages, favorite haunts and travel destinations.  You are right there with them through everything.  Every experience is conveyed with thoughtfulness, honesty, and humor.

By the time she gets into the nuts and bolts of caring for Geoff you understand their devotion to friends, loved ones, and each other.  You understand her motivation to join in his denial, protect him from the injury of falls, and support his remaining life.  You understand their great desire to push through the difficult bits and continue enjoying all that their respective, amazing, lives have to offer.

Since it is a memoir, and not a caregiving guide, there’s little in the way of tips and tricks for helping someone with PSP (his diagnosis, after many exams), although as she describes how she manages, you pick up on what works and what doesn’t.

Most useful to caregivers of any long-term illness is her frank recollection of her thoughts and feelings, how she dealt with the stress of caregiving, complicated by trying to be available for her husband, her family, and her career.  She is not shy about sharing her mistakes and correcting them, nor her guilt over injuries he suffered because of those mistakes.  At the same time she reprimands herself for not always carrying a book in her bag for those long hours in the ER after his falls.

It took some struggle on both their parts for Geoff to accept each new dependence on Kathryn, even though he had cared for his first wife, Barbara, through 12 years of Multiple Sclerosis until her death.  It’s not the same when you’re the one being cared for and he had no control over emotional outbursts because of the disease process.  And they didn’t know PSP itself was a factor in those outbursts for a few years.

When Kathryn was frustrated with her mother’s behavior in the last weeks of cancer, Geoff recognized her mother’s behavior as separating from the family and the world in preparation for death.  He had seen the same in Barbara and shared that with Kathryn to ease the strain between her and her mother.  She remembered this when he was in hospice and his advice about her mother, “This is her journey.  Just be there for her.”  As difficult as it was, she was there for her mother, and for Geoff.

Kathryn takes us with her through the funeral arrangements and some months after.  She shares with us not only her grief, but the support of friends and family, and a bit of how she moved on.  In a quiet moment she realized that she was not only going to need to learn to live without Geoff, she would need to redefine her life.  She would find his presence in unexpected places, and make peace with that.

– Denise

 

Paying for caregiving expenses

This post will likely be of interest only to those very new to caregiving.

This is a short blog post by a certified financial planner about paying for caregiving costs.  Though addressed to adult children who need to understand their parents’ finances, I don’t think anything in this post is specific to adult children and their parents.

The first step is accessing your family member’s financial information.  The second step is making decisions about what assets can be used to pay for care.

There is a summary of assets that may be available, including:
* Social Security
* Medicare
* Medicaid  (called Medi-Cal in California, by the way)
* Retirement Plans
* Reverse Mortgage

I would add:
* Medigap insurance
* Long-term care insurance
* Veterans benefits

The author says the following about Medicare: “[Someone is] eligible for Skilled Nursing Facility Care only after a hospital stay and only up to 100 days.”

This isn’t quite right.  The patient must have been in the hospital for a minimum of three days in order to qualify.  The first 20 days are totally paid by Medicare.  Assuming there is still a skilled need, then up to 100 days total is paid by Medicare but there’s a daily deductible.

Here’s a link to the full article:

thecaregiverspace.org/understanding-your-elderly-parents-finances/

Understanding Your Elderly Parents Finances
The Caregiver Space
Posted by Shane P. Larson
Jan 12, 2017

Robin