“Preparing For A Future That Includes Aging Parents” (NPR)

This post may be of interest to adult children and parents with children, or those interested in the costs of long-term care (adult day services, home care, assisted living, nursing home).

As part of an NPR series on multigenerational households, “Family Matters,” there’s an article about the adult children assuming the financial costs of caring for aging parents.

You can find the “Family Matters” series here:
www.npr.org/series/150002308/family-matters

Here are key excerpts from the article “Preparing For A Future That Includes Aging Parents”:

* “While aging is inevitable, planning for the costs associated with dependency in the latter phase of life doesn’t come easily to most Americans.”

* “People dread talking about it because we don’t like to face our mortality,” says Jack Hetherington, a certified elder-law attorney in suburban Philadelphia. He estimates that fewer than 1 person in 5 takes even the first steps needed to prepare legally and financially for taking care of an incapacitated parent.

* “But with Americans living so much longer now, the younger generation has to do more thinking about how they might care for parents who have exhausted their savings.”

* “Experts say any serious plan for caring for aging parents must begin — not with discussions about money — but with a legal document designating someone as having ‘power of attorney.’ That paperwork grants authority to another individual to handle decisions if a loved one can’t make them as a result of illness or memory loss.”

* “Once the legal paperwork is done, families can turn to an array of sources for legitimate advice on boosting savings, buying appropriate insurance and maximizing home equity.”

A link to the article and the full text are below.

At the very bottom of the online article is a chart on the costs of elder care, according to the MetLife 2011 Market Survey of Long-Term Care Costs.

Robin

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www.npr.org/2012/04/24/150587638/preparing-for-a-future-that-includes-aging-parents

Preparing For A Future That Includes Aging Parents  (Part of the Family Matters series)
NPR
by Marilyn Geewax
April 24, 2012

Planning a wedding is exciting.

Mapping out a vacation is fun.

Figuring how to afford care for your confused, elderly father? That one may never cross your mind — at least, not until you need more money to care for him.

“Never thought about it,” Natasha Shamone-Gilmore, 58, says about her younger self. “Never ever.”

She thinks about it a lot these days. Shamone-Gilmore, a computer trainer in Maryland, now shares a modest home with her husband, 24-year-old son and 81-year-old father.

Like millions of other middle-aged Americans, she had long regarded her parents as robust adults, more than capable of managing their own affairs. “My mom was a very active woman; my dad … was a Safeway employee for 40-something years,” she said.

But time does what it does, and today, her father needs a caretaker. So she has had to step into that role and figure out how to make it all work financially.

Shamone-Gilmore’s family is one of three multigenerational households being profiled by NPR this spring. Their stories will help highlight the importance of family financial planning. The series, Family Matters, began last week and will continue in installments each Tuesday into June.

While aging is inevitable, planning for the costs associated with dependency in the latter phase of life doesn’t come easily to most Americans.

“People dread talking about it because we don’t like to face our mortality,” says Jack Hetherington, a certified elder-law attorney in suburban Philadelphia. He estimates that fewer than 1 person in 5 takes even the first steps needed to prepare legally and financially for taking care of an incapacitated parent.

Consider this contrast between expectations and reality:

Only 13 percent of some 4,000 U.S. workers surveyed for the 2011 Aflac WorkForces Report believe that the need for long-term care would affect their families.

And yet providing long-term care is, in fact, common. Nearly 10 million adult children are caring for aging parents, according to the MetLife Mature Market Institute. Other adult children are contributing to the cost of a parent’s assisted-living care, which MetLife says averages about $3,500 a month.

“The percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past 15 years,” the research group found.

Of course, in today’s tough economy, it also is common for elderly adults to be supporting their adult children. But in some ways, that’s easier to accept: Parents often plan to leave whatever wealth they have to their children anyway. The flow of wealth from older to younger generation feels natural to many.

But with Americans living so much longer now, the younger generation has to do more thinking about how they might care for parents who have exhausted their savings.

“That’s a tough one,” says Paul Taylor, director of the Pew Research Center’s Social and Demographic Trends project. “You have lots of uncertainties in your own life, let alone worrying about paying for your parents’ care.”

So like many other baby boomers, Shamone-Gilmore is struggling with bills, and hoping to reform her family for the future.

“Now that it’s happened to us, and I am the household coordinator, I am now trying to educate the entire family that: You guys need to get in line,” she says. “We’re not thinking. No one is thinking.”

Experts say any serious plan for caring for aging parents must begin — not with discussions about money — but with a legal document designating someone as having “power of attorney.” That paperwork grants authority to another individual to handle decisions if a loved one can’t make them as a result of illness or memory loss.

“The purpose is to provide a safety net in case of incapacity,” Hetherington says. “If you wait too long and you don’t have the capacity to make decisions, you end up in guardianship court, and that could involve lawyers, doctors, judges, time and money.”

Once the legal paperwork is done, families can turn to an array of sources for legitimate advice on boosting savings, buying appropriate insurance and maximizing home equity.

For example, many employers offer workplace benefits that include free financial planning services. Credit unions can help, too. Public library shelves are loaded with books on how to get started making a financial plan, and websites, such as HelloWallet (hellowallet.com) and Mint.com, offer help.

Individuals can ask for professional referrals from the National Association of Personal Financial Advisors (napfa.org).

Hetherington says taking those first steps can be difficult. “But it’s the only way of avoiding problems down the road,” he says.

Guide to PSP and CBD for General Practitioners

This terrific guide for general practitioners on two disorders — progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).  The guide was published by the PSP Association, based in the UK (pspeur.org).  The guide covers many topics including diagnosis, treatment (management, medication), difficult conversations, cognition and behavior, end-of-life care, support for carers, and stem cell treatment.

Here’s a link to the guide:

www.pspeur.org/user/docs/PSPA%20GP%20Guide%20April%202012.pdf

A Guide to PSP and CBD for General Practitioners and Community Nurses
PSP Association, UK
June 2010

Probably many of us are envious of the “multi-disciplinary care team” available to those in the UK.  Note that a lot of the terms and certainly medication names are specific to the UK.

Helping caregivers “find their way back into society”

My online friend Lynn, whose mother with Lewy Body Dementia (autopsy-confirmed) died a few months ago, shared this article in her local Tampa newspaper with me today.  She said it rang true for her.

The author of the newspaper article is Gary Joseph LeBlanc, who wrote the book “Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving.”  I shared some book excerpts on caregiver guilt in February 2012.

In the Tampa Tribune article, Mr. LeBlanc says:

“Reportedly, 45 percent of caregivers will go through mild to severe depression for up to two or three years after a loved one has passed. Many will never fully recover and once again enjoy a functional social life. They must learn to slowly accept the up and down changes one day at a time. It’s highly unlikely that those who have traveled down the rough road of caregiving will ever look at life in the same manner, but I mean that in a good way. Most come away with tremendous growth in their emotional and spiritual inner being. But there’s no question that there is a recovery stage one must go through. So, if you know of any caregivers who have recently lost a loved one, help them find their way back into today’s society. Take them to lunch or to an uplifting movie. Simply getting them out of their house may bounce them back on the right path to start enjoying life again.”

Here’s a link to the full article:

www2.tbo.com/lifestyles/health-4-you/2012/apr/21/4unewso19-offer-friendship-to-lonely-longtime-care-ar-394361/

Offer friendship to lonely longtime caregiver
Tampa Tribune
By Gary Joseph LeBlanc | Special correspondent
Published: April 21, 2012

New Forum Area of MSA Trust Website

Many of you know of the UK-based Sarah Matheson Trust, which is now called the Multiple System Atrophy Trust.  They have a great website — msatrust.org.uk — with high quality MSA information.

I was digging around their website tonight, when I realized that they have a new forum area.  Registration is required to post to the forum but it’s not required to read posts on the forum.  Here’s a link directly to the MSA Trust Forum:

www.msatrust.org.uk/our-forum/the-community-group3/forum-forum1

The two “hottest” topics on the Forum are about “diagnosis” and “symptoms compared.”

In a post about whether MSA can occur without orthostatic hypotension, one of the RNs at the MSA Trust replied as follows:

“Not everyone with MSA will have postural hypotension. We would expect to see an autonomic dysfunction for it to be diagnosed as MSA however. People living with Parkinson’s can have a postural drop, but the Parksinson’s medications can also lower blood pressure. Not straight forward to reply to I am afraid as everyone is so individual.”

This forum is certainly not as active as the ShyDrager Yahoo!Group but the discussion is easy to follow on the forum.

New (but not so active) Canadian MSAer’s Blog

I stumbled across this multiple system atrophy-related blog tonight:

http://cmsasg.graphimania.ca/
Canadian Multiple System Atrophy Support Group
Information for the Canadian victim and caregivers

There is only one introductory blog post, made in late January 2012.  I’ve copied it below.  If, later on, you see additional posts there that make worthwhile reading, please let me know!

In a section on “Clinical Trials,” there’s info about the rifampicin trial going on in the US.  The Canadian blogger notes that he/she is also trying rifampicin, prescribed by an MD in Canada.

There is a section on “What is Multiple System Atrophy!”

Robin

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My Experiences With MSA
Posted on January 29, 2012

The real battle is information, the diagnosis of MSA and finding a knowledgeable Doctor is a struggle and that’s where I hope to help my fellow Canadians. I hope to do this by gathering all the useful information and resources I can collect into one central location. I would also encourage any person or organization that wishes to contribute to feel free to post content to this site or an email address/link and I will respond asap.

My initial personal experience was one of frustration and disappointment followed by some seriously amazing support! I will share my experiences with you in an effort to hopefully spare you some of my frustrations! I suffered with chronic exhaustion, stiffness of joints, sore muscles with various other ailments and symptoms. My doctor did test after test, I visited specialist galore all to no avail, these were later identified as MSA symptoms.

The simple truth  was that my doctor simply had no exposure or experience with MSA, and it was only by luck that after years of working together to try and find out what was wrong we got a break. He was attending a seminar presented by Dr. Joyce Lee and after listening to an in depth diagnosis he realize that he indeed knew somebody that was showing the symptoms she was describing, me! Shortly after that I had a session where my blood pressure crashed into the low 70s and then skyrocketed to the high 190s at one point rose to 215 and above, totally out of control and unregulated!

This proved to be a turning point as we all know unregulated blood-pressure is one of the more serious problems with MSA and was confirmation of our suspicions! An appointment was booked with Dr. Joyce Lee for a conclusive diagnosis which turned out to be positive for MSA.