Planning elder care is fraught with emotional minefields. Perhaps nothing is harder than when dementia or Alzheimer's strike, and a loved one’s skills or judgment has degraded and family action is required. This may mean taking away car keys, insisting that a caregiver comes part of the week, or that the elder move to live in a facility.  This is always easier if you know that your parent, when entirely competent, had expressed a preference for how to handle the situation. The trouble is that we find that many families have not made such plans.

This is the first of a series of blog posts on lessons learned on navigating that difficult terrain.  In future posts, we will address how to handle situations when someone’s competence has declined due to dementia, stroke, or other factors. For today, we will assume the elder is competent to make decisions.  This leads to our first recommendation:

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Note: The following was published in our monthly column "Living and Loving: Elder Care in the 21st Century" in Gate House News' Concord Journal.  We will continue this theme of elders and emergency preparedness in this blog with periodic articles on the subject.

We are now in the middle of the Holiday Trifecta -- Thanksgiving is past, and the year-end holidays are around the corner.  Holidays can be especially stressful for those of us whose parents may be declining. This covers a wide range -- in some cases, it can be as simple as realizing that you will need to begin to devote regular efforts to help a loved manage through daily life; in others, we might face the grief of knowing, or fearing, that this is probably the last holiday season together.

Because remote family members visit so often during the holidays, we often receive requests at this time of year to help assess whether someone is still safe, and to identify the kinds of help available and what might be needed.  We also notice enormous stress in uncertain adult children hoping to do the right thing with their parents while navigating uncharted waters.  In this column, we will provide holiday visit guidelines, from how to manage a short trip to considering whether a member can continue to live alone, safely and unaided.

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On Day 4 without power following our recent late-October snowstorm, a woman in her 90s slowly rolled into a municipally-run emergency shelter at a nearby metro-west Boston town.  Leaning heavily on her walker, she looked at the shelter manager wearily and said, "I'm cold. I want to sleep here tonight."  Her caregiver interjected quickly, "I have to get back home,” eyeing the exit.

The shelter manager quizzed them about the elder's ability to function independently.  How much care was needed, and what type?  It turns out that the caregiver came 3-4 days a week; the senior was a bit confused, not fully independent in several of the activities of daily living, nor could she manage her own medications safely. Just not handling her medications independently was enough of a deal breaker, according to the manager. "I'm sorry, but this shelter cannot accommodate you," said the manager. "You'll have to find somewhere else to stay."

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Aging has changed during the past generation.  From an elderly woman choosing to live alone in Belmont, MA rather than enter assisted living, to a Concord wife with mild dementia struggling to provide senior care for her ailing husband, to a Bedford couple in their 90s and still home with outside help, we see many more families with elders who have moderate to significant needs. Those terms of care can stretch into years.

This requires a change in attitudes and expectations for families to reduce their stress. It’s necessary to reset our expectations and assumptions that result from such widespread changes. Let me illustrate with a story.

Ted and Mikie

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Stressed out caregivers... stressed out clients... stressed out families!   We all have to deal with stress in our world, but caring for (and being!) an elder loved one can add new tensions in our day.  But there is a lot we can do about addressing our stress levels, including using powerful minds to create greater easy and relaxation. And it can be done in just a moment!

Though a long weekend at a retreat sounds like it would be required to bring our stress down a notch or three, actually our minds are so powerful that we can make a real difference in our lives by practicing brief moments of very simple meditation.  Studies have shown that momentary relaxation techniques practiced regularly can impact not just our sense of stress, but our physiologic functioning as well. Now, that's powerful stuff!

Below is a sweet little video about one such brief meditation technique. Teach not just to yourself, but to your elder loved ones -- and practice it with them.  A stressful moment is a wonderful time to pause and say, "Hey, let's both take a minute to relax and meditate." Bet things seems different when you come back to whatever it is that's been stressing you!  (Please let us know in comments how this works for you....)

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Thanks to The Concord Journal for publishing a story about us in in today's edition.  It's about how our Dr. Deborah Bier has become certified to teach the Alzheimer's Association's home care giver training course, and how vital it is to have trained caregivers for such patients.  Read it here online.

Anyone who works at a Massachusetts home care agency is surrounded by a wealth of resources, but none of them is more valuable than Joanne Koenig-Coste, the nationally-known author of Learning to Speak Alzheimer's.  Joanne spoke recently at Newbury Court, an assisted living facility in Concord Massachusetts, on her passionate devotion to people with Alzheimer's over the past 40 years.  At Caring Companion, we recommend her book over all others to families and those who work with Alzheimer's people.  Anyone who has heard her speak knows that her compassion and energy flow freely from her, and many more ideas flow from her than can be captured in a single blog post. Rather than try that, I have captured three great ideas from her recent address. I'll blog on others at another time.  So for this week, here we go from Joanne:

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Challenging Behaviors and the Dementia Patient

June 8, 2011, 8:00am–10:00am
50 W Main St, Hopkinton, MA
Golden Pond Assisted Living
50 W Main St, Hopkinton, MA 01748
Breakfast: 8 am
Presentation & Q&A: 8:30-10 am
RSVP to Golden Pond by June 6 at 508 435-1250

Sleep disturbances… resistance to care… suspiciousness… sundowning… hoarding… rummaging… These challenging behaviors can be frustrating, frightening, and exhausting for families and caregivers of dementia and alzheimers patients.

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Recently, I was honored to be part of a four-person panel at the Wayland Public Library speaking on the topic "What's New in Aging?" We discussed navigating the new terrain of aging in the 21st century, followed by a question and answer session from the audience. Juergen H. Bludau, MD (photo at right), Harvard University and Brigham and Women's Hospital geriatrician, and Carol Sneider Glick, Esq, elder law specialist with Squillace & Associates of Boston, were wonderful fellow panelists. (Part 2 of this talk is scheduled for April 6, 7pm at the same location - register here)

I want to note here high points of the evening, including the excellent questions the audience brought. I felt very much at home in the company of these speakers, all on the front lines of bringing best-quality care in a quickly changing landscape. My fellow panelists as well as the audience of about 45 from Wayland, Weston and beyond were enthusiastic and engaged with every presenter's points.

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By Guest Blogger, Paula von Kleydorff, Program Director, Carleton-Willard At Home

(Editor's Note: Caring Companion is proud to be a Carlton-Willard At Home recommended provider; CWatHome members enjoy special pricing or other considerations from recommended providers)

Carleton-Willard At Home is in the forefront of what is being called a “Village Movement.” In 2001, Beacon Hill Village was the first in the country to begin providing comprehensive services to local residents who preferred to remain in their homes as they aged.  Across the United States there are now 54 organizations similar to At Home and another 100 in development.  Some are in the middle of urban areas, others are suburban and one in California covers hundreds of miles.  But all have a common goal – giving local residents the peace of mind and support needed to age in place.

This past November, representatives from many of these groups came together in Philadelphia under the auspices of the Village to Village Network, a national organization launched last year.  Throughout the two day conference, new and developing groups listened to and shared their stories, compared program offerings and brainstormed about ways to operate more effectively and efficiently.

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Topics in this just-published snailmail newsletter:

• Better Care - Lower Cost - Improved Health! Elder Care Remote Activity Monitoring Technology Pilot
• Want to Participate in One of Our Pilots - Free!
• Caring Companion Awarded Home Care Agency Accreditation
• Optimism Connected to a Stronger Immune System

Download this newsletter here: CCCnewsletterv2.1 (if you would like to receive our next newsletter  by email or snailmail -- or to have it sent to a friend, client or family member -- This email address is being protected from spambots. You need JavaScript enabled to view it. with the name contact info).

When it comes to fulfilling our greatest potential as human beings experiencing aging, do we really know what truly excellent aging looks like? Just what is possible for elders? How much resilience and adaptation to change are possible as we age? How many unfounded assumptions are we making about what is possible for us as we age, despite our imperfect health? And how do those assumptions keep us from helping elders from experiencing the best lives possible?

I am of the school that says, "we know a lot less than we think we know," and every day I work to provide home care and family support through CCC, I have to admit: even a really, really, REALLY open-minded and optimistic person like myself -- a person who absolutely thrills at having her mind expanded when it comes to the possibilities of human potential -- even I have limiting assumptions about aging that are much better discarded.

Which is why I just love the four links I'm about to pass along: they each remind me that we never know what is truly possible... that it's likely what we believe is the outer reaches of human aging today are going to be considered laughably limited in 10 years.

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The Center for Connected Health in Boston hosts the  Connected Health Blog, and recently Dr Joseph Kvedar discussed developments he expected, or was watching, over the next 10 years. His observations are telling for their omissions: he focuses on electronic medical records and on payment issues -- issues of enormous import, no doubt.  However, he was speaking of a world as-yet emerging: ubiquitous high-speed wireless works and (even) smaller, cheaper mobile technologies that will come.

But improvements in connected health do not need to await the day of universal 4G networks and RFID chips in our underwear. We could do more with what is available today. It requires more a change in thinking than the development of new technology.