Dementia Caregivers: How to Build Meaningful Relationships

Dementia Caregivers: How to Build Meaningful Relationships in Spite of Memory Loss

BLOGGER: Michael B. Friedman, LMSW and John Zeisel, Ph.D.

Being the caregiver for someone you love who is gradually losing mental capacities is about as tough as it gets in human life outside of wars, disasters and profound poverty. Parents who were once your source of nurturing and knowledge; who worked hard to take care of their family; who had interests in politics, religion, sports, movies, celebrities and more; who had fun with their friends; who may have been among the best in their field. Parents who lose their mastery and become unable to manage their own affairs or to care for themselves in the most basic ways — parents who become dependent on you to take care of these things for them — can be, and often are, a source of great sadness.

Spouses and lovers who were your soul mates, your partners in life, the people with whom you shared your most important, moving, pleasurable and challenging moments — spouses who gradually lose their capacity to be with you as companions and confidantes can also be a source of great sadness.

On top of this, the time, energy and resources that it takes to be the primary caregiver for these people who are so important to you, can sap your own strength. You can feel that it is more than you can stand.

What can help?[1]^{, [2]}

Changing your expectations of the person with declining cognitive capacities can make a big difference, helping you to be less frustrated and irritated by his or her inability to do what they once could and especially to be with you in the way they once were.

Focusing less on the past and on a wished-for future can make it possible to connect emotionally in a new way and to get the most out of the moments you have together. Our relationships are often oriented toward a collective future: retiring together, traveling together, getting old together. It can be daunting to maintain a relationship that does not have the kind of future we always assumed it would.  But it is not impossible to have relationships in the moment that are emotionally satisfying even if we are terribly sad about what they, and we together, have lost.

Understanding that the person we love is still there, despite their inability to access memories without help, can also make a difference. Reminiscing together — even if it is mostly one-sided — can be a gratifying experience, especially when the person’s eyes light up with recognition. Talking about and engaging in old interests, listening to favorite music, going to a baseball game or even getting the feel of it on TV, watching old movies, taking a walk in the old neighborhood — all these can be sources of satisfaction in the moment. Even if the explicit memory of these experiences slips away because of the complex ways in which dementia affects the brain, the emotional connections remain.

Discovering the possibility of being together in silence can be deeply moving and meaningful as well. When we put aside our dashed dreams long enough to be open to the rich emotions alive in that silence, just being together can release an unspoken emotional exchange.

But what about the really difficult times? Dad has wandered away again. Is he safe? Mom says she doesn’t recognize you and yells for the police when you visit. Your wife curses you for cheating on her. Your husband demands sex with the home health aide. Your friend seems lost in himself and does not respond to your presence at all. What can you do?

There is no magic wand guaranteed to make bad times go away. Even if by changing our own behavior we reduce their anxiety and agitation, sometimes the people we care about remain disengaged. Some people’s disappointments and angers run so deep that moments of peaceful, loving exchange seem impossible. Some of us who are caregivers can’t stand another minute.

But these terrible times do not beset all people all the time, not by a long shot. It may seem impossible for the person you care about to get meaningful satisfaction out of a life so different from the life she or he lived before cognitive decline. It may seem impossible to have a meaningful and satisfying relationship with a parent, a spouse, a partner or a friend with whom you can no longer have in-depth conversations. It may seem that they cannot possibly find life worth living.

But a great many can. People with significant cognitive limits can get satisfaction out of life, and it is possible for us to have meaningful relationships with them — if we learn to shift what we want and expect from them, see the person who is still inside, and develop the capacity to live in the emotional moment.

(Michael Friedman is Adjunct Associate Professor at Columbia University’s schools of social work and public health.  John Zeisel, Ph.D., who is Founder and President of The I’m Still Here Foundation and of Hearthstone Alzheimer Care.)

 

Asus Skype Interview Audio

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Asus Skype Interview Audio

Jacob “The Wizard” Heiser interviewed his Grandma on the new Asus Transformer and what she thought of using a computer for the very first time at 90 years of age.  Click the link below to hear the audio interview!

interview with Grandma

Grandma Got an Asus for her 90th Birthday

Asus Transformer Unboxing and Setup

Video Blogger: Jacob “The Wizard” Heiser

Watch ImagineAge’s Jacob Heiser unbox, set up and take a closer look at the Asus Transformer tablet for his Grandmother’s 90th birthday.  This is the first computer she has ever owned and it will be her first time using Skype to talk with her family across the country!

 

Did I Ever Tell You…?

BLOGGER:  MARY LANGUIRAND, PHD

There are days when it takes all the self control I possess to be with Carol, a pleasant 87 year old woman with mild age-related cognitive loss.  I can empathize with the complaints about the kids who don’t visit often enough, the aide who forgets to put her phone within reach, and the salad with the wilted lettuce.  However, I sometimes think that if I hear one more repetition of the story about how her husband bought her a cherished emerald ring in 1973, I may tear out my hair.  It’s a long story, it never changes, and I believe I’ve heard it at least twice a month for the past three years.

Short-term memory tends to fade with advanced age, as it is based on such factors as ability to attend to the environment, maintain focused concentration, and track complex information. As illness, diminished energy and perceptual changes erode some of those capacities, the ability to recall recent information diminishes.  In contrast, memories from years past strengthen, having been reviewed and repeated (and revised and edited) many times. Caregivers often marvel that Mom can’t remember her upcoming doctor’s appointment, but can tell you what she paid for milk in 1964.

You might think that listening to the same story over and over would be a neutral or—at worst—a mildly boring experience.  After all, we hear all sorts of things repeatedly—recorded messages on trains and busses, the music in TV jingles, liturgical passages at religious ceremonies—and many people find the familiar tolerable, and even soothing.  Why then, do so many caregivers report that hearing yet again about Dad’s heroic actions in the fields of Korea or Mom’s days as a cheerleader can drive them to drink?

Much of the frustration comes from the fact that this sort of repetition is one of the most inescapable “proofs” that someone has reached a point where they are more comfortable in the past than in the here-and-now, and that this isn’t likely to change.  The effort of attending to current realities is too much, and they’ve surrendered to the comfort of the familiar.  The content of these repeated tales is also rather telling, as it can give some clues to those events and experiences that impacted the person most profoundly: If a parent’s most cherished memory relates to things that happened long before you were born, what does that say about you?

Repetition apparently isn’t limited to the senior set…  When emailing a younger colleague recently, I shared a past experience that I thought resonated with some current events, and was quite chagrined when reminded that I’d already told that story.  I felt rather hurt that my misplaced effort at empathy (and the chance to recount how I’d saved the day ‘back in the day’) apparently generated boredom and annoyance, along with the message that I’m forgetful.  No kidding—I really don’t remember having told that one before…

Once I moved past the hurt feelings, I began to think about getting my act together and scoring some points in the present, instead of resting on past laurels, which is probably a good thing.   I also began to develop a new appreciation for Carol’s experience. I thought about my own response to her oft-told story about the emerald ring, and how I regularly discount her need to re-live a time when she felt loved and special. I just hope profoundly that I don’t communicate my impatience as clearly as my colleague did.

I can’t honestly say that the story took on a new glow when I heard it again, but I did realize that maybe Carol shares it with me because our interactions remind her of that time when she felt valued, and appreciated, with years of life yet to be lived and goals yet to be accomplished.  Maybe I need to put more effort into helping her to recapture those feelings in her current relationships.

Realize that when someone relates an experience to you you’re hearing about it for a reason.  Don’t just hear, listen.

Mary Languirand and Robert Bornstein 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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Social support network may add to longevity

Social support network may add to longevity

People with friends, family and community involvement were 50% less likely to die during study periods than those with sparse social support, survey finds.

Happy Holidays?

Happy Holidays?

(Or, Here’s Wishing the Grinch Would Just Steal Xmas Already)

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

Across America, real-life families will soon gather around festive holiday tables to enjoy gourmet feasts, basking in the comfort of warmth and plenty, giving thanks for the many gifts they have received this past year. It goes without saying that the greatest gift of all is the gift of family—those beloved, loving people who stick by us in good times and bad, give our lives meaning, make us happy and proud. Oh, people have their little differences, of course, but truly, at the end of the day family is what matters. That’s why we have holidays…

Most of our patients believe all of the above. They are also convinced that theirs is the most dysfunctional, annoying clan on the planet. The leaky ceiling over the less-than-Martha-Stewart-worthy table could be tolerated, as could the mismatched chairs and cramped quarters. Ditto the dry turkey, lumpy gravy, and assorted vegetable horrors cobbled together by committee. Thoughtless gifts—the toolkit for you (who can’t change a light bulb), or the brightly lit magnifying makeup mirror for your sister (who frets endlessly over her crow’s feet)…..those too could be borne with humor and grace. After all, it’ll be a good story for your friends. But the people! How in a just world could you possibly be related to them? Maybe you were mixed up with someone else at birth. Imagine a room filled with willfully annoying fools who just happen to have your entire history at their fingertips (complete with youthful mistakes, former passions, 70s disco-era photos, and other horrors), and whose notion of a good time is making fun of you.

Or perhaps you’re the hostess, opening the home you slaved to clean and decorate, watching your guests put sucked-on bone fragments into your centerpiece, smear your good napkins with indelible lipstick, and render your bathroom unusable. Maybe you got everybody to agree to détente for just one day, only to find that your cousin’s notion of truce is to choose today to come out of the closet to his fundamentalist parents and introduce his lover to everyone at your party. Or maybe you’re the one who couldn’t take one more minute of your brother’s yammering on about his great career and big raise and over-the-top vacation, so you chose today to remind him of how his success came at your expense. At the end of the day, the house is a shambles, and everybody’s in tears (except for Cousin Mildred, who’s locked in the bathroom). Surely nobody else has to deal with this, nobody…

Let’s get real.

To some degree, everybody deals with this, all the time. Real life isn’t perfect, and neither are families. Illness and death, poverty and disappointment, bad choices and worse luck happen. Further, most folks don’t accept these experiences with dignity and grace all the time, and tend to let down their guard when surrounded by people close to them. If you choose to see this as intolerable and unacceptable, you’re not going to enjoy the holidays. But if you choose to see it as an unpleasant but tolerable fact of life, you’ve got a chance of salvaging the season.

Remember that you have choices, and you are where you chose to be. If you’re thinking, “You don’t get it—I can’t just not go” you’re wrong. If you really, truly don’t want to deal with the dysfunction of a holiday meal, you can opt not to attend—it’s your call. There will be consequences; your decision will make some people angry and unhappy, and you will eventually have to address that with them. But if you feel strongly enough that this really isn’t something you want to do with your life and time, you don’t have to do it

If you choose to attend, you can also choose to engage or not to take the bait when the dysfunction fires up. You know these people well enough to predict their behavior, so figure out what’s likeliest to get to you, and then plan how you’d like to respond to defuse the situation. Practice the response in your mirror a few times, and when the zingers start, use your now-practiced skills. Change the subject, respond minimally, take a walk around the block, or just don’t respond. You probably won’t get it quite right at first, so keep practicing—you’ll get better at it over time. If you don’t feel able to develop these strategies on your own, seek professional help (no kidding). Therapists have pre-holiday rushes of new patients for good reasons.

If you really want peace, do not escalate a volatile situation artificially. Alcohol may make some situations more tolerable in the short term, but it will ultimately disinhibit behavioral controls. Ditto sleeplessness, too much noise, too little space, too much or too little heat. Don’t overdo, and avoid the obvious pitfalls. Take care of yourself. Spend at least some time with the people who really do make you happy, doing things you really do like to do. These might be ordinary water cooler moments rehashing the game, or coffee with a friend, far from the madding crowd.

And when it’s all done, don’t forget to get your share of leftovers to take home. These are, after all, the best part.

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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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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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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