On Meeting Up with Elders: The Early Bird Special

On Meeting up with Elders: The Early Bird Special

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

A friend told us the story of her mother’s most recent visit. Her mom didn’t drive, and planned to come by train. While not thrilled by this plan, there were few realistic alternatives, so our friend agreed—reluctantly, to be sure—and promised to be waiting at the station to pick her up. She arrived 10 minutes before the train was due, only to find her mother shivering on the wind-swept platform, clutching her suitcase: She’d taken an earlier train, having arrived at her departure station well ahead of schedule. The inevitable “why didn’t you call?” was met with protests that she was perfectly fine, didn’t want to disturb her, and so on. Our friend’s initial response was guilt, quickly followed by irritation, generating more guilt.

As we age, our capacity to judge time accurately diminishes: Most people begin to perceive time as passing more swiftly. This tendency is magnified significantly in the early phases of certain forms of dementia, when minutes start to feel like hours. However, the behavior isn’t limited to people with dementia—many older folks become hyper-aware of how time is precious and fleeting, and not wanting to miss out on anything, even the most laid-back elders evolve into “early birds”.

Other age-related factors also contribute to this shift. Deteriorating night vision can lead to avoidance of rush hour traffic and crowds, while the need for frequent bathroom breaks may make your loved one insist on multiple pit stops everywhere you go. For some family members and friends these behaviors are seen as harmless quirks, good for the occasional joke about having dinner mid-afternoon. However, these quirks can actually lead to some significant stress, particularly when you’re their primary source of transportation and support. When your own schedule is already overbooked, Dad’s insistence on arriving for his doctor appointments half an hour early may grate on your nerves (especially if his doctor is notorious for running late….and whose isn’t). A dozen phone calls to remind you of the appointment beforehand along with requests that you “hurry up” while en route may generate tension. So do frequent “what time is it getting to be?” queries while you sit in the waiting room, powerless to move things along.

It’s hard not to resent Dad for getting you into this mess in the first place, and hard not to deliberately start running late on pickup days to regain control of the situation. So what can you do? Three things.

First, try to determine whether your loved one’s “need for speed” is motivated by underlying worries about issues other than concern with timeliness. You may discover that Mom’s fear of getting home late is actually due to concern about her dog, or that Dad’s insistence on dining early is based on his need to save a few dollars. Addressing those issues may lead to much relief all around.

Next, set a realistic time schedule, review it as needed, and stick to it. If you know from experience that it takes Mom at least 10 minutes to put on her coat, lock the door, and put her keys in her purse, factor that into the schedule. Explain what you’re doing: “Your appointment is at 10:00am. It takes 10 minutes to get out of the house, and 15 minutes to get there, so I’ll be at your place at 9:20. We’ll have plenty of time to get a parking space and hit the bathroom.” While unforeseen circumstances may arise, stick with the plan; with sufficient repetition, your loved one will realize that you’ll get where you need to be when you need to be there. (And if she wants to stand on the porch for a half hour before you arrive, that’s her decision.)

Finally, review your own attitudes toward time. “Wasted” waiting room time can be a valuable opportunity for a one-on-one chat with your loved one. It can also be an opportunity to catch up on your reading, draft this year’s holiday message, plan next week’s menus, or text that friend with whom you’ve been meaning to re-connect. It can also be a brief interlude of relaxation for you to enjoy. A bit of reframing on your part can go a long way toward making a frustrating situation much more tolerable….for both of 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. The second edition, revised and updated, was recently released. Here’s the link: http://www.newmarketpress.com/title.asp?id=901

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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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