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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FINDING HOME CARE FOR ILL OR AGING PARENTS

Finding Home Care for Ill or Aging Parents

BLOGGERS: ROBERT F. BORNSTEIN, PHD

MARY A. LANGUIRAND, PHD

In an earlier blog we talked about strategies for coping with caregiver stress–finding ways to manage the upset that follows those inevitable glitches and setbacks that occur when caring for an ill or aging parent.  In this blog we explore one way of preventing caregiver stress before it occurs: a professional caregiver.

There are many different types of home care services, and they vary according to the care-receiver=s needs.  The more complex the problem, the more highly trained the caregiver must be, and the higher the cost.  The average cost per visit for a home care nurse today is more than $120; the average cost per visit for a home health aide is more than $60.

To be covered by Medicare, a service must be ordered by the patient’s physician, who declares the service medically necessary.  A wide range of in-home services can fall into this category, including:

·      Skilled nursing care

·      Speech, physical, and occupational therapy

·      Dietary and nutritional consultations

·      Some educational services (for example, diabetes self-care)

·    Rental or purchase of medical equipment (such as a wheelchair or blood-glucose monitor)

How can you fund services not covered by Medicare?  For many people the best option may be a long-term care insurance policy.  Unlike Medicare, most long-term care policies cover some custodial or non-skilled services (such as light housekeeping and transportation).  Eligibility criteria differ from policy to policy, and you should check with your insurer for details before you contract for services.

Who May Provide In-Home Care?

In-home care is typically provided by certified home health care agencies, and certified independent in-home caregivers (also known as independent providers).  A certified home health care agency is a corporation that provides a range of in-home services.  To become certified, the agency must meet stringent federal and state standards in a variety of areas.  Certified agencies must make their customer satisfaction data available to anyone who requests it, so don’t be shy about asking for this information: Reputable agencies are usually happy to share it with you (it’s a big red flag if they hesitate).

Not all good caregivers choose to work for agencies; many prefer to offer their services privately.  Independent providers can usually be located through Medicare, from insurance companies, via the web, or in the Yellow Pages (look under AHome Health Services@ and ANurses@).  Like home health care agencies, independent providers are required to meet certain criteria in order to be licensed.  They must have adequate training, and appropriate experience.  They must also have malpractice insurance, adhere to the ethical standards of their profession, and fulfill continuing education requirements to stay up to date on the latest findings and treatments.

How to Evaluate an Agency or Provider

Once you find an agency, or independent provider, how do you assess the quality of their services?  First, meet with them personally.  There=s nothing like a face-to-face interaction to help you judge a potential caregiver.  Second, review their credentials.  Everything should be in order here–no exceptions, no excuses.  Third, ask others about the provider=s performance.  Past clients are a great source of input.  Finally, trust your instincts.  If something feels wrong, it probably is.

Questions are important, but not all information can be obtained just by asking.  To evaluate a potential caregiver, you’ll need to judge a few things for yourself.  Any good caregiver–whether they’re an independent provider or employed by an agency–should have six qualities:

·      A professional appearance Although most caregivers don=t look like television nurses, a sloppy or unkempt appearance simply isn’t acceptable.  A professional caregiver should be clean and well-groomed, and dressed appropriately for the job.

·      Good observational skills A caregiver must be sensitive to changes in the patient’s condition–especially those the patient can=t describe directly.  Having the caregiver interact with the care receiver can be helpful in this regard.

·      Good communication skills A caregiver must be able to communicate clearly with folks who have perceptual problems (so don’t be surprised if they speak slowly, loudly, and very directly).

·      Quiet self-confidence Self-confidence is essential in a caregiver.  After all, part of the caregiver=s job is to provide reassurance to you and your loved one.  A good caregiver helps both patient and family member feel that everything is in good hands.

·      An open mind Caregivers and care receivers are often quite different–in age, gender, and perhaps religious or ethnic background.  Care receivers often vent their frustration on those around them, blurting out insults when depressed or upset.  An experienced caregiver expects this, and won’t take it personally.

·      A sense of humor Professional caregivers know to expect the unexpected.  Food gets spilled.  Bedclothes get soiled.  An even temperament and a dose of good humor are essential in a caregiver whose work is sometimes unpleasant.

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 here to read his bio.

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