YOU ARE CURRENTLY BROWSING THE Caregiving CATEGORY.
The Boomers Rock Radio Show and the host Tom Matt, conduct interviews with many professionals on topics relating to boomers. This particular podcast talks about the importance of generativity. Learn more about this topic and many others on the Boomers Rock Radio Show!
The Importance of Generativity Podcast - with Dr. Deborah Heiser
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.
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.)
[1] Sanders, S and Swails,P. “A Quest for Meaning: Hospice Social Workers and patients with End-Stage Dementia” in Social Work Vol 56, Number 2, April 2011. http://oberon.naswpressonline.org/vl=5971918/cl=20/nw=1/rpsv/cw/nasw/00378046/v56n2/s4/p129
[2] Zeisel, John. I’m Still Here: A New Philosophy of Alzheimer’s Care. Avery. 2010.
BLOGGER: Michael B. Friedman, LMSW
After a person has been diagnosed with Alzheimer’s disease or other dementia, subsequent emotional, mental, cognitive, and behavioral problems are usually blamed on the disease. Other possible reasons including behavioral disorders such as depression, anxiety, or substance abuse or ordinary human reactions to tough realities are very often ignored.
“Grandma seems terribly sad.”
“ Of course, she has Alzheimer’s”
“Grandpa has been nasty lately“.
“It’s the Alzheimer’s.
“ Uncle John doesn’t enjoy life anymore.”
“ Who would? He has dementia.”
“ Mom isn’t eating much or isn’t taking her pills or isn’t getting any exercise.”
“It must be the Alzheimer’s”.
Not necessarily. In fact, blaming dementia very often gets in the way of understanding what is really going on and doing something about it that will help.
If there were a pill that would reverse, stop, or — better yet — cure Alzheimer’s, it might be useful to understand the emotional and behavioral problems of people with dementia solely in terms of the disease. But the best pills available now only delay the unavoidable decline in memory and other cognitive functions. That’s worth doing, of course, for the people for whom the pills work. But counting on the doctor to come up with medicine that will make a big difference usually is disappointing.
People with dementia experience many of the same emotions as people without dementia, but they are at higher risk than older adults without dementia for diagnosable mood and anxiety disorders, both of which can result in declines in cognitive functioning that are similar to the decline associated with dementia.
Unlike dementia, however, depression and anxiety can be treated effectively; and if they are, the loss of cognitive functioning that is caused by these disorders can be reversed. To be clear, treating depression and/or anxiety does not reverse dementia and the loss of cognitive functioning caused by dementia. But effective treatment for mood or anxiety disorders can result in overall improvement of functioning that can make a very big difference in a person’s life.
These days, of course, the first line of response to depression and anxiety is medication. However wise that is for people without dementia, it is unwise for those with dementia. Medication can be helpful, but it can also be dangerous. At the very least, doses must usually be lower than for younger adults.
Better is to begin with interventions that do not rely on medications. Some formal psychotherapies can be helpful, such as “cognitive-behavior” and “interpersonal” therapy. Exercise, interesting activities, and social contact with people they enjoy can also be extremely helpful.
Most important is to understand (1) that people with dementia are adults with meaningful life histories, personal interests, individual desires, and a need for dignity and respect and (2) that behavioral “problems” are to a significant extent in the eye of the beholder. People with greater understanding and tolerance of behavior, that most people find trying, are generally better able to help people with dementia to get the most out of life.
I don’t mean to make this sound easy. Some people with dementia are so profoundly sad and lost in themselves that they may be impossible to reach. Some people are “scared to death” by the slightest change in routine. Some people completely deny that they have any need for help. Some people are abusive towards anyone who tries to help them, evoking responses in kind from many — if not most — of us.
But many people could be helped to overcome emotional problems that co-occur with, but are not caused by, dementia.
In an ideal world everyone with dementia would be able to get a sophisticated assessment to distinguish between the effects of dementia and other disorders and then to get the treatment that would be most likely to be effective. But in the real world there is a terrible shortage of physicians who understand the subtle differences between dementia and depression and other disorders. In the real world there is a terrible shortage of geriatric psychiatrists and other mental health professionals. And in the real world, paid and family caregivers usually do not get training and support to help them be more skillful with and tolerant of the people they care for.
Our nation needs major changes in policy to address these shortfalls. In the meantime, however, we need to understand that there are ordinary emotional causes for the sadness, disengagement, and anger experienced by so many people with dementia and that we caregivers can do much to meet human needs often neglected because of a frightening diagnosis.
Grandma is sad? Grandpa is nasty? Maybe they are clinically depressed and could benefit from treatment. Maybe she’s lonely and he feels he’s being treated like a child. Maybe it’s something else. But be careful not to jump to the conclusion that it’s because of the dementia.
Are you one of the 2.9 million grandparents in America who are raising their grandchildren? Although there are many good reasons to do this, it brings increased responsibility, stress and sacrifices that you probably didn’t anticipate for your “golden” years. Kin caregiving becomes necessary in families of all backgrounds and socioeconomic statuses and for many reasons, from military service to parental illness or death to child abuse or neglect. Census data reveal a significant increase in kin caregiving recently, probably due to the recession. When called to provide care, you may be relieved that the children can be safe with you, but now you have a lot to do. You’ll need to take care of getting the children enrolled in school, apply for financial and medical benefits, make sure they are seen by a pediatrician, perhaps arrange for counseling, consider pursuing custody or guardianship. The list goes on and on. So how do you do this and still find time for yourself? Many grandparents respond to the children’s needs first and try to take time for themselves later. Many never get to it — an understandable choice, but ultimately you need to take care of yourself to be able to do the best you can for your grandchildren. How Can You Cope? Becoming a kin caregiver evokes many emotions, from the joy of having your grandchildren with you to feeling angry and resentful about your adult child being absent or about your losing so much — your time, possibly your job, your independence, sleep, your financial security.
How can you cope?
• Staying healthy is important. Don’t miss your annual physical or ignore symptoms that are new for you. Fit in some exercise. Walking is a lot better than nothing.
• Have some fun. Stay in touch with friends. Do things you enjoy.
• Find reliable people to talk with — a trusted friend or family member, clergy or a counselor. Alternatively, join a support group where you can talk with others in similar situations and learn about services and resources for you and your family.
• When you feel overwhelmed and that you can’t possibly get everything done, make a list of things to do, decide what has to get done now and what can wait, and schedule when you will do them. Literally, put them on your calendar.
• Talk with your grandchildren about what you’re finding difficult. They may be having a tough time emotionally, but they also may be able to help more than you think.
All of this is easier said than done, and you can certainly expect that there will be times when you feel that you just can’t take it anymore. That’s par for the course when raising children. Sometimes it’s wonderful to be with the kids; sometimes it’s enough to make you furious or bring you to tears. But sometimes caregiving can overwhelm anyone. You may not be able to do the things that really have to get done or lose patience more than you used to. You may feel hopeless or helpless or lose pleasure in everyday life. You may have trouble sleeping, more than the usual physical aches and pains, or be drinking too much. You may be withdrawing from the friends and support you need. These are all signs that your coping is running short and when you need to recognize that you need to take care of yourself in order to care for your grandchildren. Raising grandchildren can be very satisfying, and it is always a challenge. Take care of your kids and take care of yourself. That’s the best caregiving of all.
This post was co-written with Deborah Langosch, Ph.D., L.C.S.W., the Project Director of the Kinship Care Program at the Center for Trauma Program Innovation at Jewish Board of Family and Children’s Services in New York City.
To become a Fan of ImagineAge on Facebook, click here!
If you enjoyed this blog, click the button below to share it!
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
To become a Fan of ImagineAge on Facebook, click here!
To join the ImagineAge Group on Facebook, click here!
If you enjoyed this, click the button below to share it!
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
If you enjoyed this blog, click below to share it with others!
To find out more about Robert Bornstein, click his photo.
To receive blog updates from ImagineAge, enter your email in the “subscribe” box on the left side of the screen. Your email WILL NOT be sold!
To become a Fan of ImagineAge on Facebook, click here!
To join the ImagineAge Group on Facebook, click here!
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
If you enjoyed this blog, click below to share it with others!
To find out more about Robert Bornstein, click his photo.
To receive blog updates from ImagineAge, enter your email in the “subscribe” box on the left side of the screen. Your email WILL NOT be sold!
To become a Fan of ImagineAge on Facebook, click here!
To join the ImagineAge Group on Facebook, click here!
Click Below to Play. Wait for the video to load.
Read the blog below.
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.
To become a Fan of ImagineAge on Facebook, click here!
To join the ImagineAge Group on Facebook, click here!
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:
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.
To receive blog updates from ImagineAge, enter your email in the “subscribe” box on the left side of the screen. Your email WILL NOT be sold!
To become a Fan of ImagineAge on Facebook, click here!
To join the ImagineAge Group on Facebook, click here!
Now that I am almost 64, who will meet my needs when I am 84?
BLOGGER: DEBBIE HEISER
AUTHORS:
Deborah Heiser, Judith L. Howe, Robert Maiden, Beverly Horowitz, Pat Brownell
When you think of growing older, what comes to mind? Fun, family, golf, workforce issues…? Workforce issues? Yes, workforce issues. Believe it or not, we need to pay very close attention to them. Each day 8,000 baby boomers turn 60. In 2011, 78 million baby boomers will begin to turn 65. The Bureau of Labor Statistics (2005) estimates the demand for employment in aging will increase 26% over the next few years – particularly in health related jobs. All the while, those 85 years and older are the fastest growing segment in the U.S. population. This age group is expected to double in 2030 to 9.6 million and to double again by 2050.
Unfortunately, there is a down side to all of this longevity. There is a HUGE need for a trained workforce to serve the aging. According to Boxer and Collins (20007), 8 out of 10 older adults have at least one chronic illness and, of those, about 2/3 have multiple chronic conditions that require complex treatment and coordinated care. Maiden, Chireac, and Maiden (2002) found that 50% of people requiring in-home care are 85 but older-family members find it difficult to secure, manage, maintain, and pay for adequate in-home assistance. To met the demand, we need 36,000 certified geriatricians; we only have 7,128 in the U.S. Despite the demand, and the increase in demand, the supply of in-home workers remains very low and is expected to remain low. Even those who are available receive very little training and are then asked to perform functions they are not adequately trained for (Maiden & Maiden, 2004). Only 5% of social workers are trained in aging issues and only 3% of advance practice nurses specialize in aging. “Besides being inadequately prepared in geriatrics, the current workforce is not large enough to meet older patents’ needs. and the scarcity of workers specializing in the care of older adults is even more pronounced” (Institute of Medicine, 2007, p. 5).
To determine what was going on in education, Dr. John Krout, a professor in New York State and a Past President of the State Society on Aging of New York, recommended taking a look at the New York State Institutions of Higher Learning. Based on this recommendation, an inventory of all schools within the state was conducted. The findings were astonishing!
Of 242 schools in higher learning:
Note ***Only one school, now defunct, offered a PhD.
The State Society on Aging of New York (SSA) and The State Office on Aging of New York (NYSOFA) teamed up in 2007to create the Workforce Project charged with understanding training needs in the State of New York. The SSA and NYSOFA conducted a series of 8 Listening Sessions across the State. The notes taken during each of the Listening Sessions were compiled and a content analysis was conducted to systematically identify key words and phrases used at each Session to determine important structures and themes. The results are based on ratings provided by three independent coders who identified and tallied themes discussed at each of the Listening Sessions.
A total frequency and percent of discussion associated with each key topic was determined for each of the seven major discussion questions that framed the Listening Sessions.
The 7 Questions asked at each of the 8 Listening Sessions were:
Question 1:
Do you see a need for more education about aging staff in your organization?
Question 2:
On what topic would you like to see more education?
Question 3:
How should training / educational opportunities be presented?
Question 4:
What credentialing and certification should be considered?
Question 5:
Should gerontology be infused into college curricula? Across disciplines?
Question 6:
What is the ability of organizations to support education/training for employees
Question 7:
Other comments
The Top 10 Key Findings were:
The findings from the Listening Sessions, as described in the Content Analysis show that a variety of issues were brought up. Some were brought up only once, and some several times.
The organizations collaborated again at the SSA’s Annual Conference in 2008 to discuss the findings and “next steps” with 120 conference participants. The participants completed questionnaires. Notes were taken and were reviewed for key themes with regard to the four workforce training and education questions posed to the group. The results are broken down by question:
Question 1:
What do you think are good next steps we can take?
The overarching theme for this question was education. Forty seven percent (47%) of the responses and notes highlighted the need for education from k-12 and. Additionally, they recommended educating college students earlier in their undergraduate education, and employing online education. Other responses with suggested sensitivity training for gay/lesbian issues in training aides, elder abuse training, expanding nursing programs, fully funding GECs, emphasizing Geriatrics as a career, exposing teachers to SSA and Teach for America, and grassroots efforts.
Question 2:
Of the top 10 key issues identified, what do you see as the most important to focus on?
There were three distinct themes for this question. Thirty nine percent (39%) of the responses advocated education, 39% training, and 22% financial aide and incentives. With regard to education, the responses were: education for k-12 and all curriculum, college students receiving education earlier in their undergrad education, and online education. Training responses were: aide training, caregiver training, and work-site training and mentoring. Financial aide and incentives were not broken down further.
Question 3:
How can we – area agencies, academics, practitioners, and government – work together to move workforce education and training issues forward?
There were two distinct themes for this question with 42% of the responses advocating financial solutions (financial aide and incentives, support the Boxer Bill, and fully fund GECs) and 31% supporting increased education (education – k-12 and all curriculum, online education, and pilot curriculum programs for secondary education
Question 4:
Can you think of any other incentives for promoting education and training in aging?
Nearly 67% responded that there was a need for community service for high school students; approximately 33% responded that there is a need for increased payments and reimbursement for medical and social services.
Recommendations coming out of the Next Steps, SSA conference, mirrored the listening sessions. They focused on education (k-12 in particular, and online training). Responses for education were addressed in questions 1-3, and for two of the three questions, was a top response.
NowWhat?
We must now move toward addressing the issues brought up by New Yorkers as key workforce issues.
Let us know what you think! Leave a comment below!
To read the full report published in 2008 by NYSOFA, please go to the State Office of Aging of New York Website: http://www.aging.ny.gov/ReportsAndData/WorkforceEducation/Introduction.cfm
To read this article on the SSA website, please go to: www.ssany.org
To become a member of the State Society on Aging of New York, please go to: www.ssany.org
To find out more about Dr. Heiser, click the photo below:
To receive updates from ImagineAge, enter your email in the “subscribe” box on the left side of the screen. Your email will NOT be sold!
To become a Fan of ImagineAge on Facebook, click here!
To join the ImagineAge Group on Facebook, click here!
RSS Feed