“I have two driving forces in my life — to be creative and to be helpful. If I had to choose one, I would choose to be helpful.”
Bernie Kessler — a retired psychologist and an active, avid, very skilled photographer and photography teacher — said this to me recently when we got together during his recovery from heart surgery and the infections and subsequent surgeries that nearly killed him after the original “successful” surgery. Bernie is 84. He knows he will not live forever. But he also said, “I am not depressed. I am grateful to be alive.”
Creative and helpful! An important insight, it seems to me.
Of course, any pair of key components of living well is bound to be too simplistic; there’s always more to it. But sometimes simplistic insights are illuminating. Freud, for example, identified love and work as the fundamental goals of human life. That rings true. But for those of us who are older, particularly for those of us who are aware that death is closing in, finding ways to shape and to express ourselves through artistic and other creative processes, and finding ways to pass on what we know to the generations of our children and our grandchildren, are increasingly important.
It is not that love and work become irrelevant to older people. They do not. But something happens as we become older that changes the nature of intimacy and changes our long-term ambitions. Love and work become a bit less central. Articulating ourselves and leaving a legacy become, or can become, as Bernie put it, our “driving forces.”
Bernie, of course, is an unusual person. He is highly educated, financially successful enough to be able to live comfortably and married to a caring woman for 63 years. He has a daughter who shares his interest in photography and visits regularly, a network of friends who have been there for him during this very difficult time and connections with several arts organizations where he has exhibited and taught regularly. For him, being creative and being helpful are possible.
What about those who may not have creative talents, who may seem to have nothing to teach, who spent their lives doing jobs they hated, who barely have enough to live on, whose families are not intact, who have few friends or who are not connected with community organizations?
If their isolation is extreme, old age is likely to be terrible. But most people have something to contribute to their families and communities, and most people have interests they can cultivate. Yes, some people create and some appreciate, but appreciation of the excellence of others is an opportunity for expertise that is satisfying in itself and can be passed on. Knowing batting averages, the plots and characters of TV shows, which celebrities are doing what with whom, the results of political polls — all of these are opportunities for personal development and to share knowledge. And virtually everyone is able to share their history, which is a great service to younger people smart enough to be interested.
The American society is wonderfully diverse, with a highly-developed sector of organizations that reflect the beliefs and interests of people from a multitude of backgrounds and life experience. Participation in these community groups, whether religious, cultural, recreational or political creates opportunities to cultivate new skills (including creative skills), to make a contribution and to leave a legacy. You don’t have to be a Bernie Kessler — a person of creative brilliance — to find the satisfactions of creativity and helpfulness in old age.
But Bernie is instructive, because even in the aftermath of illnesses that nearly killed him and have left him visibly weakened, he has lifted his art to a new level. While I was visiting with him, he showed me photographs he is readying for a new show. It is called “Silent Places,” and the photographs are simple black and white renditions of furniture in otherwise empty rooms. They are stark, without visual flamboyance, but filled with a sense of transcendent meaning that takes us beyond their visual surface. This work captures, I think, what the philosopher of art Arthur Danto has called “the transfiguration of the commonplace.”
Bernie’s new photographs are mature work that he probably could not have done when he was younger, despite the considerable beauty of the work he has produced over the years. I don’t mean to suggest that young people cannot produce works of transcendent meaning. Obviously they can and do. I only mean to suggest there are new opportunities for creativity and self-definition in old age.
Bernie Kessler is just one illustration of the possibility of new discovery and of the cultivation of a meaningful legacy in the final stage of life.
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.
Posted 3 months, 2 weeks ago at 12:08. Add a comment
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.
Posted 4 months, 2 weeks ago at 12:08. Add a comment
BLOGGERS: MICHAEL FRIEDMAN, L.M.S.W. and LISA FURST
Although depression is not a normal outcome of aging, it is dangerous and one of the most significant barriers to aging well. [i] Fewer than 5% of older adults have major depressive disorder in any given year[ii], but as many as 20% have significant symptoms of depression.[iii] It is frequently unrecognized and untreated[iv], resulting in much unnecessary suffering and lost opportunities to age well.
Fortunately, depression in old age can be overcome. How? There are four general, not mutually exclusive, approaches—(1) lifestyles that promote mental health in old age, (2) getting professional help, (3) developing skills to manage disturbing moods yourself, and (4) getting help informally from family, friends, and community resources such as clergy.
Mental Health Promotion: To vastly oversimplify, the keys to avoiding depression in old age are being physically healthy (a mix of luck and self-care), being physically and mentally active, being involved in personally satisfying activities and relationships, and achieving a sense that you have had a life of meaning and value.[v]
Once depressed, however, maintaining such a life can be very difficult. Despair can dissolve a sense of achievement in life and create the conviction that there’s no point trying to stay well, active, and involved.
Professional Interventions
Screening can be a first step towards dealing with a depressive disorder. It should be routine in primary and specialty health care and in settings where older adults live or congregate, such as senior centers[vi], but unfortunately it is not.
The most common screening instrument, the PHQ-9,[vii] is filled out and scored by the person being screened, but diagnosis by a professional is needed to confirm a positive finding.
Treatment can be effective.[viii] The most common forms of treatment are medication and psychotherapy. Both cognitive and interpersonal therapies have been shown to be effective[ix]. The combination of medication and psychotherapy appears to be most effective.[x]
Great care is needed regarding medication for older adults, keeping doses as low as possible to avoid potentially severe side effects but as high as necessary to have a therapeutic effect.
Although highly controversial, electro-convulsive therapy (ECT) appears to be effective for some people with severely disabling depression who do not respond to other treatment.[xi]
Increasingly, treatment for depression is provided by primary care physicians. They often do not have the time or training to provide sound treatment.[xii] Various models of care management within primary care settings have emerged to provide needed follow-up and psychotherapy.[xiii]
Many people with major depressive disorder need treatment by a mental health professional such as a psychiatrist, psychologist, clinical social worker, or nurse. Unfortunately, there is a great shortage of trained geriatric mental health professionals.
Self-management: Some people with depression, particularly those with recurrent depressive episodes, develop effective self-management skills, sometimes on their own, sometimes with the help of a mental health professional. These include self-observation skills that make it possible to anticipate depressive episodes, recognize them when they occur, resist the powerful urge to withdraw, remain active and involved with other people, control suicidal impulses, and know when to go for help.
It is very important not to confuse self-management, which can be effective long-term, with self-medication with alcohol and other drugs, which cannot.
Informal Interventions: Most people who seek help turn to non-professionals—to family and friends they trust and to respected figures in their communities, especially clergy.
People who are willing, and have enough time, to spend with a person who is depressed can be extremely helpful.[xiv] Talking—not about the depression but about anything of interest, having fun, socializing, or even taking a walk can counter depression.
Spiritual experience is particularly helpful to people who find comfort through faith or religion.[xv]
Informal interventions may not be enough for people with “moderate” or “severe” depression or during periods of profound hopelessness, psychosis, or suicidality. Then professional help may be essential.
Do these approaches to overcoming depression work for all older adults who are depressed? Of course not. There are some who reject any offer of help because they are in a state of denial, feel too hopeless to believe that help is possible, or are too weary to make any effort. There are people with depression who anger so easily or who are so unpleasant that they drive away all but the most saintly people who might be helpful. And there are some people who do not respond to any form of treatment.
But these are the exceptions. Yes, depression can be dangerous and is a barrier to aging well, but it is not an inevitable outcome of old age; and, when it occurs, it can usually be overcome.
Need help for yourself or someone you care about?
To reach local mental health helplines call 1-800-273-TALK.
(Michael Friedman is Adjunct Associate Professor, Columbia University Schools of Social Work and Public Health. Lisa Furst is Director of the Training and Technical Assistance Center of The Geriatric Mental Health Alliance of New York and co-author of Depressed Older Adults: Education and Screening)
[x]Bartels, SJ et al. “Evidence-based practices in geriatric mental health care: an overview of systematic reviews and meta-analyses” in Psychiatric Clinics of North America 2003. http://www.ncbi.nlm.nih.gov/pubmed/14711131
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.
I am afraid of developing dementia, the most common form of which is Alzheimer’s disease. The possibilities are horrifying — the ineluctable loss of memory and other cognitive functions; dependency on others to dress me, to feed me, to change my diapers; slipping into a fog, where I cannot recognize even people I love.
But is dementia inevitably a cruel, distorted end of a human life?
When I was younger, I thought so. I had no doubt that I would prefer death to living in a demented state; that I would want to take my own life; and that, if I missed the timing and could not act on my own, I would want someone else to do it for me. “Just shoot me,” I said to my wife — knowing, of course, that she would not and could not, but hoping that she would act swiftly as my health care proxy to have any kind of life support — including food and water — removed when I was no longer myself.
As I have become old (I am now 68), my thinking has changed. When the time comes, if the time comes, I may want to live — even if I cannot engage in witty conversation; even with the need for someone to help me hobble on a walker to get out for a breath of air; even with the indignity of someone cleaning me after I mess my diapers.
What we expect and want for ourselves changes over time. That is the fundamental insight of developmental psychology. When I was a child, being a child seemed right. When I became a teenager, I fought against being a child. As a grown-up, my adolescence was an embarrassing memory. I am happy now not to be driven to succeed at the work, which largely and happily defined my existence as an adult. The low-stress life I am fortunate to have now feels right to me.
What will feel right when I am very old? Will I care if I can no longer analyze public policy? Will I be deeply distressed if I cannot write or teach? Will I suffer if I cannot tell a joke or have an informed conversation about politics, world events, and the fields of knowledge and activity that have been central to my life?
Or will a visit from someone I like make my day? Will my daughter and grandchildren (if I have them) be a source of constant interest? Will watching world events on the TV with only faint understanding be enough? And when the time comes, if it comes, will the feel of the sun on my face be enough for me to want to live? Will a caring hand on my shoulder, the taste of French fries, the sound of jazz, the sight of a beautiful painting or sunset be enough? I do not know the answer.
I do know that dementia unfolds in stages. Although many people in the early and mid-stages are devastated by the growing loss of important abilities and develop mood or anxiety disorders, others have “full” lives that include the pleasures of friendships, love, and sex; the satisfaction of participation in social and communal activities; and even the discovery of new interests. In fact, some experts on dementia (see, for example, John Zeisel’s book, “I’m Still Here“) maintain that diminished cognitive functions result in the release of capabilities that have been suppressed by the very cognitive abilities that are now in decline — particularly the willingness to take creative risks and the openness to human affection and intimacy.
There are, as we all know, people with dementia who become depressed, frightened or angry — some so angry that they are abusive to people who try to care for them. There are some people with dementia who wonder why they are alive, or wish for death.
But there are also people with dementia who experience pleasure, who feel love, and who are at peace.
So, even though I still fear developing dementia, I no longer say with any sense of certainty, “Just shoot me.”
