Ditching Public Hospitals

NPR – Future of Primary Care?

by Julie Rovner

Future Of Primary Care? Some Say

‘Medical Home’

Palliative Care

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Dr. Tom Caprio, a geriatrician, talks about Palliative Care.  Find out what Palliative Care is and what Palliative care isn’t.  Questions and comments are encouraged, so don’t be shy.  If there is something about Palliative Care you’d like to know about, leave a comment for Dr. Caprio.

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Coping with Dementia: A Caregiver’s Guide

Coping With Dementia: A Caregiver’s Guide

BLOGGERS: MARY A. LANGUIRAND, PHD

ROBERT F. BORNSTEIN, PHD

Many people who have experienced a loved one’s dementia have said that given the choice, they’d rather deal with almost any other ailment, no matter how painful or debilitating.  Medical science has gotten pretty good at alleviating pain or restoring physical function—hearts can be made to beat properly, lost limbs can be accommodated with prosthetic devices, failed organs can be replaced via transplant.  However, there’s almost nothing we can do to fix the deterioration of memory, communication skills, and reasoning that dementia steals away.  Some recent experimental drugs hold promise, but at this point most of those medications are just that: experimental.  And few experiences are as frustrating as watching a once-vibrant, intelligent, witty person deteriorate into a confused stranger.

There are numerous forms of dementia, and great differences from person to person in how dementia symptoms are expressed.  However, all forms of dementia have certain common features.  These include:

• loss of memory and impairment in reasoning abilities
• changes in the ability to produce and/or understand verbal, written, and symbolic language
• deterioration in everyday practical skills

In the early stages of dementia, the person usually knows that ‘something is wrong’.  She may realize that she is having difficulty remembering names, balancing a checkbook, or figuring out how to use the microwave.  Some people acknowledge their problems openly and voice frustration, fear, or embarrassment about them.  While this response may provoke worry in you, it’s actually pretty adaptive: It’s an opportunity to discuss the problems openly, and work on ways to address them.

Things get trickier when your loved one goes to great lengths to hide or deny their difficulties.  They may offer plausible explanations and excuses.  “I read perfectly well—I just need new glasses!”  “The buttons on that remote are too small!”  “I know exactly where I left my bag!  It’s not there—somebody must have taken it!”

At first you will probably respond with problem-solving suggestions and helpful gestures, arranging eye appointments, buying new remotes, and so forth.  You’ll eventually find that most of these efforts don’t actually solve the problems (even if they help temporarily).  Worse, over time your efforts may be met with angry rejection, recriminations, or even abuse: Dementia is frightening to the person who has it (even if they deny it), and they’re likely to lash out at the nearest moving target.  That’s you.

You may both get pretty frustrated and angry with one another during this period, and the relationship may become quite fraught.  You feel that you are always encountering an angry, frightened, edgy person who is quick to attack you for their problems.  The care-receiver feels that they’re being patronized, marginalized, or discounted.

As the disease progresses, the capacity for realizing that there are problems fades, and the person with dementia becomes less aware of her behavior and its impact.  At this point, the patient is often blessed with ‘pleasant confusion,’ especially if their environment can anticipate and meet most of their needs successfully.  They may not be able to tell you who’s president, name their grandchildren, or recall how to cook a favorite meal, but as long as they can be physically comfortable, they tend to accept whatever is happening without question.  Some skills and pieces of information may be preserved pretty well—they may be able to knit with great skill, or recite baseball statistics from games they watched 30 years ago with total accuracy.  Often, they will construct a sort of “Reader’s Digest” version of their life experiences and beliefs, which will be presented as indisputable fact.  When the story is reasonably accurate and presents all the players in a favorable light, it can be a pretty good construct (so leave it alone).  Problems arise when significant distortions or hard-to-hear criticisms of yourself or those you love get incorporated into the narrative.  Hearing one parent criticize the other, or advise new acquaintances that your spouse is a real loser hurts, even if there’s some truth to the observation.  Worse, you (and everyone else) will hear it over and over.  The temptation to argue, correct, or defend may be very strong.  Sadly, facts and logic usually get you nowhere.

So, what do you do?  Some responses tend to work better than others.

First, remain calm. Answering the same question 20 times in one afternoon or hearing your loved one recite a totally skewed account of events for the hundredth time can make you want to scream.  Losing your cool helps nobody.  Your loved one did not develop dementia in order to annoy you, they’re not doing it on purpose, and they can’t help it.  So change the subject.  Suggest that you go out on the patio and look at the flowers.  Take a break.  If all else fails, leave—do something that will help you regain control.  Take a walk, grab a cup or tea, call a friend, pray.

Distraction sometimes works. Some realities will not change however much you discuss them, rendering the interaction upsetting and pointless.  “Re-direction” is the formal term for moving from a hot topic to something more neutral.  It’s harder to do than it sounds, especially with people with dementia, who can be surprisingly stubborn in their focus on a given topic.  However, persistence can sometimes pay off.  “Why can’t I go home with you tonight?”  can be countered with “They’re going to be showing your favorite movie in the dining room after dinner.  Remember how great Bogart was in Casablanca?”

Keep problem-solving efforts reasonable. When Mom complains that the telephone buttons are too small, buy her a phone with bigger numbers.  When she complains that there are ‘too many numbers to dial,’ program the speed dial function, and leave a note explaining how to use it.  However, when she complains that she can’t actually reach anybody on the phone in spite of all these efforts, what are you supposed to do?  That one’s a trap, so you may want to respond with a vague reply about ‘how busy people are these days,’ and change the topic.  You cannot ‘solve’ dementia—know when to quit.

Here’s a key one: Try to acknowledge feeling, rather than content.  “I want to go home” may actually mean “I miss the way things were,” “I’m frightened,” “I hate being sick,” or all of the above.  You know your loved one well, and can probably make a pretty good guess about the feelings associated with many of the things she says.  In this area the research findings are clear: Addressing the underlying feeling is more effective than arguing the logic.

That’s our best advice, but we’d like to hear from you as well.  What are your experiences in coping with a loved one’s dementia.  What has worked for you?

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press (2009). Here’s the link: http://www.newmarketpress.com/title.asp?id=901

To find out more about Robert Bornstein, click his photo.

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CAREGIVER’S GUIDE TO MANAGING MULTIPLE ROLES

Stretching to Cover:  

The Caregiver’s Guide to Managing Multiple Roles

 BLOGGERS:  Mary A. Languirand, PhD and Robert F. Bornstein, PhD

The typical caregiver has many roles–daughter or son, spouse, parent, co-worker, sibling, friend…..the list goes on.  Some of these are supporting roles, with modest demands, but some are leading roles with multiple responsibilities.  The juxtaposition of large and small, crucial and trivial, short-term and long-term requires a lot of cognitive and emotional readjustment.  It sounds easy until you try to do it.  The sheer energy required to shift perspective from one role to another is one part of the stress.  Weighing competing views and opinions is another.  When everybody needs a piece of you, allotting your time and energy becomes a complex balancing act.

We’re always amazed at the flexibility shown by many caregivers.  There you are, talking on the cell phone with children, or directing clients or office staff on important matters as you tote drugstore bags with Mom’s favorite lipstick and hand lotion, her laundry neatly folded in a duffle on the other arm.  When you think about all the steps involved in those processes, and all the details you’re juggling, it’s amazing you can keep it all straight.  But what’s the impact–what’s the cost?

Great thinkers encourage us to ‘live in the moment,’ and savor life as it happens.  It’s a terrific idea, but when you have many roles the actual experience is very different–at any given moment, you must think about your next move, your next meeting, next week, next month, and next year.  Someone recently remarked that most days they begin work while still in the shower–funny, but true.  The shower, the drive to work, and the other moments of ‘down time’ can quickly be absorbed in thinking about our responsibilities.  We ruminate about work while driving, focus on the kids’ recital during a meeting, generate a grocery list at the recital.  The result is the feeling of always being ‘elsewhere’ or in the ‘wrong’ mode.  This is less of a problem while in the shower than it is when you’re behind the wheel (since research suggests that half of all car accidents are due to driver distraction), but it’s still a problem.

People are often surprised to see the data on multitasking.  Not only is the practice actually less efficient than doing one thing at a time, it also has emotional costs.  Not being fully present in what’s happening causes you to miss events going on around you–you’re there, but derive little benefit.  Further, those close to you really do notice–and sometimes resent–your ‘absent presence’.  Bosses, clients, spouses, and children are notoriously intolerant of anything less than your undivided attention.  However, their resentment–whether or not they express it directly–likely pales next to that of an ill or aging loved one.

When you’re ill your world tends to shrink.  Makes sense if you think about it: The personal relevance of many matters outside your immediate environment becomes increasingly remote.  From a psychological viewpoint, this is good energy conservation–you don’t waste precious time on things that aren’t affecting you.  It also captures one part of ‘being in the moment’ quite brilliantly.  However, it can be problematic when dealing with those still focused on more distant matters.

When you’ve had a horrible day at work, gotten bad news about the kids, and sloshed through evil traffic in two inches of sleet to deliver your loved one’s laundry (all the while listening to news about the tanking economy and mortgage meltdowns), you should get a little credit for your care giving efforts.  You might even want a little sympathy.  You’re more likely to get criticized for ‘not visiting enough’ before getting an earful about everything that went wrong while you were away….

So what can you do to cope?  Three things:

1.  Role pruning

Those who have pondered deep philosophical matters all come around to the same conclusions: Life is precious, time is fleeting, and there aren’t any do-overs.  You can’t ever get lost time back, so give some thought to what you’re doing and why.  Review each of your commitments, and take a hard look at what you give and get in each.  You can’t just ditch some roles when they’re no longer fun.  If this were possible, few teenagers would still have their parents’ address or phone number.  However, you can re-evaluate the roles you’ve taken on, and change those that aren’t fulfilling.  Some burdens are eased by reminding yourself that they’re temporary.  You can also delegate responsibilities.  In spite of how it may sometimes feel, you are not the only person in the world able to do some tasks.  Share the burden–ask for help.

2.   Set some limits

Figure out how much time you want to allocate to each role, and stick to those guidelines.  True, some flexibility is in order here: Emergent situations do arise, and require appropriate action.  However, if some parts of your life seem to generate constant chaos and absorb most of your energies, it might be time to put on the brakes.  Leave losing battles, and give more of yourself to those things that re-energize you.  This is based on sound psychological principles: Reinforce desirable behavior, and withdraw reinforcement from bad behavior.  So if your loved one is truly being impossible, it’s OK to visit briefly and call it a day–you’ll stay longer when she’s in a better mood.  You can advise her of what you’re doing and why if you want to, but it really isn’t necessary.  The beauty of reinforcement principles is that they impact behavior naturally, regardless of whether the person is aware of it.

3.   Take care of yourself

We’re bombarded by the same messages over and over for a reason:  they’re important, they’re usually true, and most of the time they work.  So here’s a good message: You must reserve time for yourself if you’re going to function optimally.  Maintaining your own health is crucial; if you get sick, nobody wins.  Exercise, time spent with friends, adequate sleep, proper diet, and a few little indulgences and self-rewards are essential if you want to keep going.  Being a good caregiver means taking care of yourself as well.  You’re not being selfish–it’s just common sense. 

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press.  The second edition, revised and updated, was just released.  Here’s the link: http://www.newmarketpress.com/title.asp?id=901

To find out more about Robert Bornstein, click his photo to read his bio and click the links to read his other blogs.

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The Value of the Geriatrician

Tom Caprio, MD is a practicing geriatrician.  In this video, Dr. Caprio defines the role of the geriatrician and gives examples of how the geriatrician plays an important role in the health of a senior.  You can find out more about Dr. Caprio by reading his bio on About Us.

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