Here’s the presentation I made at the Michigan Association of Senior Centers conference in Mt. Pleasant on November 6, 2015. The presentation discusses social, political, and economic trends and how they represent opportunities for senior centers to reinvent themselves by responding to these trends and offering relevant programming to address them.
McArthur Foundation Fellow and poet, Heather McHugh, decided to use her McArthur award money to start a non-profit respite program for family caregivers who have been caring for a disabled person in their homes for 10 years or more. She calls her organization Caregifted. Caregivers who qualify submit a simple application and a medical certification of the care receiver’s need for care. Ten caregivers each year are given week long respite trips, and the Caregifted website relates their experiences and what the week of respite means to them.
McHugh reports that a family close to her and caring for a child with disabilities made her aware of the unremitting tasks that claim the parents’ attention. This was the inspiration for Caregifted. I am inspired by the creativity that McHugh and her colleagues have brought to the organization. Fund raising includes an auction of art works and a literary review. Additionally, the organization is producing a documentary on long term caregivers entitled Unsung. Snippets of the film footage can be viewed here. By any measure, McHugh has been successful as a poet and academic, yet she decided later in life to offer a service very little related to her earlier career path. This endeavor illustrates to me that, regardless of stage in life, we can all find ways to collaborate with like-minded others and apply our talents to improve lives and make a unique contribution.
April 16th this year is National Healthcare Decisions Day (NHDD), which is a day to think about and prepare or update your advanced directives for healthcare. It’s a great gift to your family and friends to let them know your wishes in case of health crises in which you may not be able to speak for yourself. It’s comforting to you to know that you’ve discussed the circumstances and interventions that would fit with your values and desires for your future. It reduces family discord to have a designated patient advocate who has a written document with your decisions about treatment. It’s also hard to think about and talk about such frightening eventualities.
There is a website about NHDD that helps make it easier to undertake those conversations and to execute the relevant documents. It lists a number of websites in which to find state-specific advanced directives forms. It also has links to many sites that help facilitate family conversations about health crises and each person’s wishes, including some card games and a phone app to store advanced directives for yourself and loved ones.
The American Bar Association’s Commission on Law and Aging also has a number of helpful resources on preparing advanced directives and serving as a patient advocate. There’s a guide to completing a universal health care power of attorney form, a guide to making medical decisions for another, and a toolkit that invites you to think about the various factors involved in coming to a decision about your possible care if you were faced with a serious medical condition.
Try not to put it off again this year. My colleagues in the senior ER are begging us all to help them to help us and our families go through such harrowing experiences in a way that honors the person at risk and helps us all have greater peace of mind.
Sue Sweeney, Chair, Department of Aging Studies, Madonna University
This is the year for the decennial White House Conference on Aging. However, the Older Americans Act, which traditionally has outlined the Conference process, has not been reauthorized and the President’s budget has not been approved. As a result, there are very little structure and no additional funds for the 2015 Conference.
Ms. Nora Super is the Executive Director of the Conference. Her background includes more than twenty years experience in aging policy and community outreach. The four themes that have emerged from community input, so far, are Retirement Security, Healthy Aging, Long-Term Services and Supports, and Elder Justice. There is a blog for the Conference at http://www.whitehouseconferenceonaging.gov/blog/ A number of regional forums are also scheduled. The closest one to SE Michigan is the conference in Cleveland, OH on April 27th.
The Administration is using social and electronic media as much as possible to receive grass roots input and conduct informational meetings. Everyone can participate by going to the web site and signing up to receive notices of events, such as webinars, and opportunities to participate. You can also provide your thoughts and/or a story about your experience with aging or aging services, such as Medicare, Social Security, or in-home services, by submitting them through the following link: http://www.whitehouseconferenceonaging.gov/submissions/register.aspx
Here’s the contact information if you have specific questions:
Aging touches everyone. I encourage you to participate in this opportunity for civic engagement at a time when our society includes the greatest proportion of older adults in history.
Sue Sweeney, Chair, Department of Aging Studies, Madonna University
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