Benefits for Older Adults

The National Council on Aging has an excellent resource for older adults in need of assistance.  BenefitsCheckUp is a Web site that screens the user for eligibility for a number of benefits at the federal or state level.  The site claims that the service has helped 3,678,107 people find over $13.5 billion worth of benefits.  The tool asks a number of questions about the user’s needs, interests, marital status, veteran status, income, assets, home ownership, expenses, and other questions that build from the answers that the user supplies to earlier questions.  You can use the tool for another person, as long as you answer as if you were that person.

At the end, a printable report is produced with a description of possible benefits, contact information for the user’s area, how to apply, and documentation that will be required when applying.  I submitted a fictitious test case of a middle-income 85 year old widow of a World War II veteran, who pays on a mortgage and property taxes, and who has two chronic illnesses.  The report I received included information on locating alternative housing, how to get a property tax exemption in the case of financial hardship, how to obtain advice on Medicare program selection, how to access the nutrition programs for older adults, information about chronic disease self-management programs, and how to get a senior discount for federal parks and national forests.  The programs recommended will, of course, depend on the information submitted.

It’s a resource that’s easy to use, provides detailed relevant information, and can be used by an advocate or representative to find the range of resources to assist with the hardship the elder is encountering.  That’s a huge advantage, because, as an example, the ability to save money on utilities or to use a reverse mortgage to access equity on a home may be the answer to the inability to pay the coinsurance on an expensive prescription.  We need to be holistic in our view of the person, their strengths, resources, and needs.  Sue Sweeney, Chair, Gerontology Department, Madonna University

Inner Work of Dementia Caregiving

I wrote this essay a few years ago, but I think it’s still very relevant.  I recently read that it’s most often the caregiver that needs to change in order to make the arrangement work, rather than the care receiver.  That’s even more salient when the care receiver experiences dementia.  The inner work of dementia caregiving relates to the techniques and approaches that one can use to be less stressed and more open to the experiences that such caregiving affords.

The Inner Work of Dementia Caregiving

Caring for a person with dementia provides an opportunity for considerable inner work.  Since the caregiver often has little external control over much of the caregiving context, working with oneself to stretch capabilities and improve coping allows for some amount of control internally.  In addition, the caregiving context can be reframed as something of benefit to the caregiver, when the caregiver commits to internal personal growth goals.

These goals may include such outcomes as increased patience, improved observational skills, enhanced empathy, increased compassion, greater psychological endurance, enhanced self esteem, improved self-control, greater self knowledge, better limit setting, assertiveness, increased ability to be in the moment, beneficial use of humor, better delineation of self versus other, ability to use perspective effectively, overcoming traumas of the past, inner balance and centering, spiritual connection, effective use of self-expression, and surrender to a Higher Power.  When these benefits are recognized and cultivated, the caregiver can credit her- or himself with the achievements attained in this arena, in addition to the benefit of care to the care receiver.

One might argue that dementia caregiving is hard enough.  Why add another layer of effort to the endeavor?  Because the attainment of these inner goals directly improves a person’s ability to cope with the caregiving, and any challenging situation for the rest of her or his life!   I would assert that improvement in any of these areas is likely to enhance the caregiver’s quality of life overall.  The following are more concrete examples of how these inner talents can be cultivated and used:

• If you find yourself feeling impatient, angry, and resentful with the care receiver for more than a few minutes at a time, this is an indicator that you are out of balance in giving and receiving (inner balance and centering).  You need to do some things for yourself that will equal the flow of your energy going out.  There are numerous ways to do this.  If you can’t find someone to relieve you right now, as soon as possible find a safe context for the care receiver, and give yourself a momentary break.  Take deep breaths.  Go outside for a few minutes or go in the bathroom and cry or be your own cheerleader and point out how much you have accomplished or play a favorite song or do a few yoga postures or listen to a few minutes of a meditation tape or call a friend for moral support or have a healthy snack… whatever is satisfying for you.  Then take a few more deep breaths and return to the caregiving situation.

• If you’re feeling overwhelmed by the events of the day try to find humor in the absurdity of it all (beneficial use of humor) or use perspective to help you cope (effective use of perspective).  If the present moment seems pleasant, focus in on your immediate experience and savor every aspect of it.  For example, if the you and the care receiver are eating a tasty lunch, focus in on the experience.  Smell the aroma of the food; taste all the nuances of flavor; enjoy the care receiver’s absorption in eating and pleasure in the food; appreciate the opportunity to sit down and relax.  Really take in the benefit of that moment before you turn to resolving problems.  If the present moment seems chaotic, focus on the bigger picture, such as how you are keeping your loved one in a safe and caring environment or only having another day before you get a break or how you’re growing from the experience.  If you’re overwhelmed with the immediate situation, do what is immediately necessary for the safety of the care receiver and yourself, then focus in on each step, and celebrate accomplishing each piece of the bigger challenge.  Or ask for guidance and inspiration, and open your mind with expectation and confidence.  Often a helpful idea will emerge that puts things in a different light or provides a creative approach to the situation (spiritual connection).

• Sometimes you’re dealing with situations that result from the long term life choices of the care receiver.  It’s tempting to feel that, as caregiver, you should fix it all.  However, it’s unrealistic and unfair to expect that you can correct the outcome of a person’s life.  For example, if the care receiver didn’t use their funds wisely, you cannot be expected to use up your retirement savings to provide for their care.  If the care receiver was difficult to get along with and alienated friends and family members, you cannot be expected to relieve the person’s loneliness (limit setting, delineation of self versus other).  You can be compassionate, supportive, and helpful, within the means that you can spare.  And that’s enough!

• If you’re reluctant to receive help from others, ask yourself why you’re not taking advantage of the opportunity (self knowledge).  Is your self-esteem dependent on the caregiving role?  Do you believe no one else can do it as well?  Do you want to be special to the care receiver?  Are you trying to solely control the care receiver’s care?  Have you lost touch with other aspects of yourself and your life?  Are you swinging between the negative poles of guilt and resentment?  What is the cost of these attitudes, to you, to the person offering to help, and to the care receiver?

Committing to inner work as a caregiver helps to shift the locus of control from the care receiver and her or his needs and wants to the caregiver and her or his goals for personal growth.  The caregiving relationship needs to work for all parties concerned.  There needs to be reciprocity in the relationship and a balance in giving and receiving.  A person with dementia often cannot directly express her or his appreciation or gratitude, so that avenue of reciprocity may not be available.  The caregiver, then, must be able to recognize the benefit to the care receiver resulting from her or his care, as well as to discern the present and future benefits to the caregiver from undertaking the care of another.  Consciously engaging in inner work highlights these intangible but powerful benefits, and results in internal resources that enhance quality of life.  Sue Sweeney, Chair, Gerontology Department, Madonna University

NCOA Tools for Self-Management

The National Council on Aging has some online tools to promote chronic disease self-management.  One is a web site entitled “Re-Imagine Your Life“, which explains chronic disease self-management programs (CDSMP), provides a video on how the training works, guides the viewer to find in-person or online workshops, offers several testimonials from people who are using what they learned from the workshops, and an FAQ about chronic disease self-management.  The online version of the training is called, “Better Choices, Better Health”, and is currently available free thanks to a gift from sanofi-aventis to the NCOA.  The font used on the web site is large and very readable, and the graphics are soft. The whole web site is very friendly.

The other online tool is a web site for alumni of the classes which they call the Healthier Living Alumni Community.  It’s intended to provide a vehicle for support and reinforcement for implementation of the beneficial decisions that the participants initiated at the CDSMP.  We need lots of tools like this to help people manage chronic illnesses, stabilize their conditions, improve function, and prevent further disability.  It takes considerable effort to change a person’s lifestyle, but the benefits in quality of life, increased productivity, fewer days of work lost, diminished need for medication, decreased burden on families, and lower health care costs, taken together, are immeasurable.  Sue Sweeney, Chair, Gerontology Department, Madonna University

Do the Old Gain at the Expense of the Young?

This past July, Lansing Community College economics professor Jim Luke gave a presentation sponsored by the Michigan Intergenerational Network on our Country’s intergenerational transfer programs:  Social Security and Medicare.  You can view his PowerPoint slides and read his blog post on the topic at www.econproph.com.  The point that impacted me the most is the fact that intergenerational transfer programs are inevitable, because the very young and the very old cannot possibly generate the resources necessary to support their well being.  When societies lack formal intergenerational transfer programs, the task of supporting the two ends of the lifespan usually falls to the family.  However, that arrangement allows many children and old people to lack support because of death, social changes, economic instability, acrimony within families, mental illness, war or other hazards.

A form of social insurance is more reliable and benefits the society as a whole, due to the economic stability provided by predictable income, and therefore predictable cash infusion into the economy.  In other words, our intergenerational transfer programs are not perks that old people receive to the detriment of the young.  They’re an organized way of addressing a universal social problem, and the current solution provides additional advantage to everyone in the society.   Indeed, we need to preserve them so that the economically productive group that is contributing now to Social Security and Medicare will ultimately receive the same benefit that they are providing to their elders.  Breaking the intergenerational compact, that would be an injustice to the young!  Sue Sweeney, Chair, Gerontology Department, Madonna University

The “O” Word

When I turned 60, I discovered with surprise that I had internalized the stigma which, in our mainstream culture, is associated with being old.  I’d taught the concept of internalized ageism for years, but somehow I didn’t expect to experience it.  After my 60th birthday, I gave more thought to what I should be wearing and how I should behave.  I was reluctant to let people know my age.  I started re-evaluating my goals and future plans.  And I felt somewhat diminished to be entering old age.  But I was a young elder, and I relied on that fact to maintain self-esteem.

Now I’m 65; I have my Medicare card; and I can no longer claim to be entering old age.  I’m  old, and that engenders many mixed feelings, mostly bad ones.  I worry about every pain and physical set back as a harbinger of coming dysfunction and ultimate demise.  I’m acutely aware that I don’t know if I’ll be able to take long bicycle rides, do the heavy yard work, or take long road trips for very much longer.  To my inner self, my value clearly lies in what I can DO, not in who I am, what I know, or what I have contributed in my lifetime.

Last week I attended two educational events:  a hospice workshop and a presentation on lifelong learning.  One would expect these events to be elder-friendly, and in general they were.  But in both events, people joked that they themselves weren’t getting old.  Pretty much everyone laughed, except me.  I don’t blame people for laughing.  Our societal ageism is so deeply ingrained that we don’t even recognize it.  It now strikes me that our attempts to deny our aging are very much akin to the attempts, in decades past, of light skinned black people to pass as white.  It’s regarded as shameful in some way to be old.

I think we need to claim the “O” word, to assert that we’re old with equanimity.  We need models of old pride, just as we needed models of black pride in the 60’s and 70’s.  And I don’t just mean the outliers, the amazing athletes, performers, or public servants, although I relish their stories.  We need models of everyday folks who are old and interesting because of their contributions, their insights, their perseverance, their faith, their commitment, their ability to endure, their roles in their families, their expressions of caring….  We can find such examples in every neighborhood.  They don’t tell us because they don’t think they’re anything special.  And we don’t bother to ask.  Sue Sweeney, Chair, Gerontology Department, Madonna University

Evidence-Based Chronic Disease Self-Management Programs

We are living longer in large measure because society has worked hard to control the spread of infectious diseases and medicine has developed treatments to cure acute illness.  As a consequence, it is chronic disease that is costing us in later life, in dollars, productivity, and suffering.  Most chronic diseases can be managed to improve outcomes and quality of life.  Drugs and medical treatments contribute to management of these illnesses, but most of what is needed is a change in a person’s daily routines and habits.  Achieving such lifestyle alterations is not as easy as taking a pill.  It takes education, practice, support, and some resources.  Our health care system is not primarily organized to provide the structure needed to promote chronic disease self-management.  However, a number of programs have been successfully demonstrated and evaluated, and are becoming more widely available.

The evidence-based Stanford Chronic Disease Self-Management Program is disseminated in Michigan through the Michigan Department of Community Health, as the PATH program (Personal Action Toward Health).  The program provides classes with information about medication and treatments, problems solving techniques, coping strategies, nutrition information, exercise and physical activity promotion, and ways of working with health care professionals.  The relationships that form among class members are also an important aspect of support fostered by the program.  Each area of the State has a contact person who knows about PATH programs implemented in that area.

At the national level, the National Council on Aging (NCOA) was recently named the National Resource Center on Chronic Disease Self-Management Education Programs to act as a clearinghouse for state and local organizations involved in chronic illness management.  Contact the NCOA’s Center for Healthy Aging for more information on evidence-based programs and how to offer one.  Sue Sweeney, Chair, Gerontology Department, Madonna University