Hi, I’m Liz, and this is a “living bibliography” of resources I’ve found for my “Things of this World” presentation at NeMLA 2011.  At present, this is rather haphazard, having grown out of my notes and thus guided largely by my own interests, but I will be crafting it to be more inclusive as we go along.  

I will also be including subject areas in case terminology escapes you as it does me.  (Sometimes, for instance, II may be looking for something on eldercare and completely overlook “ageism” as a category for relevant info.) Lists of caregiving lingo will have their own clearly labeled section.

Non-academic sources are perfectly welcome, and they have their own section at the bottom.  Also, if I can, I would like to find creative resources.  Art, craft, poetry, and so forth that help one understand or even cope with caregiving would be a great addition to this, as creativity helps heal that pesky mind-body gap that plagues academics especially.

If you have questions or suggestions, please email me at academic.caregiving@gmail.com.  You can also scroll to the bottom to find out more about the real person attached to this googledoc!

Academic Resources: Articles found on JSTOR

Pruchno, Rachel, Julie Hicks Patrick; Christopher J. Burant.  “African American and White Mothers of Adults with Chronic Disabilities: Caregiving Burden and Satisfaction.”  Family Relations. 46.4, Family Caregiving for Persons with Disabilities  (1997):335-346  (special issue?)

Cook, Judith A.,  Bertram J. Cohler; Susan A. Pickett; Jeff A. Beeler. “Life-Course and Severe Mental Illness: Implications for Caregiving within the Family of Later Life.”  Family Relations. 46.4, Family Caregiving for Persons with Disabilities  (1997): 427-436.

“Reciprocity, Elder Satisfaction, and Caregiver Stress and Burden: The Exchange of Aid in the Family Caregiving Relationship” National Council on Family Relations.

Stein, Catherine H., Virginia A. Wemmerus; Marcia Ward; Michelle E. Gaines; Andrew L. Freeberg; Thomas C. Jewell.  "Because They're My Parents": An Intergenerational Study of Felt Obligation and Parental Caregiving.”  Journal of Marriage and Family. 60.3  (1998): 611-622.

Starrels, Marjorie E., Berit Ingersoll-Dayton; Margaret B. Neal; Hiroko Yamada.  “Intergenerational Solidarity and the Workplace: Employees' Caregiving for Their Parents.”  Journal of Marriage and Family. Vol. 57, No. 3  (Aug., 1995), pp. 751-762

Bhattacharjee, Yudhijit. “Family Matters: Stopping Tenure Clock May Not Be Enough.”  Science, New Series. 306.5704  (2004):2031+2033

Martha Ackelsberg; Gayle Binion; Georgia Duerst-Lahti; Jane Junn; Laura Van Assendelft; Bang-Soon Yoon.  “Remembering the "Life" in Academic Life: Finding a Balance between Work and Personal Responsibilities in the Academy.”  PS: Political Science and Politics. 37.4 (2004): 879-883.

Fox, Greer Litton and Velma McBride Murry. “Gender and Families: Feminist Perspectives and Family Research.”  Journal of Marriage and Family.  62.4 (2000): 1160-1172.

Schnittger, Maureen H. and Gloria W. Bird. “Coping among Dual-Career Men and Women across the Family Life Cycle.”  Family Relations. 39.2 (1990):199-205.

Perna, Laura W. “The Relationship between Family Responsibilities and Employment Status among College

Academic Resources: Articles found on Project Muse

Overall, Christine. “Old Age and Ageism, Impairment and Ableism: Exploring the Conceptual and Material Connections.”  NWSA Journal.  18.1 (2006): 126-137.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia.  16.4 (2001): 17-33.

Allison, Juliann Emmons.  “Composing a Life in Twenty-first Century Academe: Reflections on a Mother's Challenge.”  NWSA Journal.  19.3 (2007): 23-46.

Mahowald, Mary Briody.  “Mother Time: Women, Aging, and Ethics (review).”  Hypatia.  17.1 (2002): 213-216.

Academic Resources: Articles found on Academic Search Premier (aka EBSCO)

Cooper, Joanne E.; Benham, Maenette K. P.; Collay, Michelle. “A famine of stories: finding a home in the academy.” Initiatives. 59.1 (1999): 1-18

Academic Resources: Forgot the database, whoops!

Guarnaccia, P.J. 2000. Multicultural Families’ Experiences of Caregiving. The Journal of NAMI

California. 11(2): 54-56

Milstein, G., P. J. Guarnaccia, and E. Midlarsky. 1995. Ethnic Differences in the Interpretation of Mental Illness: Perspectives of Caregivers. Research in Community and Mental Health 8:155-178.

Guarnaccia, P.J. 1998. Multicultural Experiences of Family Caregiving: A Study of African-American, European-American and Hispanic-American Families. In: H. Lefley, editor. Families Coping with Mental Illness: The Cultural Context. New Directions in Mental Health Services. San Francisco: Jossey-Bass. Pp. 45-61.

Academic Resources: Books

1. Women of academe : Outsiders in the sacred grove Nadya Aisenberg and Mona Harrington

2. Aging families and Caregiving edited by Sara Honn Qualls, Steven H. Zarit.

3. Forced to care : coercion and caregiving in America Evelyn Nakano Glenn.

4. The Family Track: Keeping your Faculties while You Mentor, Teach, and Serve ed. Constance Coiner and Diana Hume George

Non-Academic Resources: Sites

“Caregiving for the Caregivers”

http://orwh.od.nih.gov/pubs/Caregiving--FINAL%202-4-09.pdf

American Psychological Association Caregiver Briefcase

http://www.apa.org/pi/about/publications/caregivers/index.aspx

National Alliance for Caregiving

http://www.caregiving.org/

Family Caregiving 101 Message Boards

http://www.familycaregiving101.org/speak/

Non-Academic Resources: Books

1. The Emotional Survival Guide for Caregivers: Looking after Yourself and Your Family while Helping an Aging Parent, Barry J. Jacobs, PsyD

2. Strange Relation: A Memoir of Marriage, Dementia, and Poetry, Rachel Hadas

Caregiving Terminology (things to google if you’re going to do a quick and dirty search)

1. Ageism
2. Geronpsychology
3. ???

Social Services for US residents - what you will see, how to navigate, how to advocate

        This is a personally resonant section on what’s pretty much a 100% personal page.  I have experienced the stress of running a household on a very small budget, as well as the stress of having minimal outside support.  For years, I thought that this was normal.  Instead, one of the first things I should have done was investigate available governmental services.  Not all caregivers can hire help or maintain daily expenses out of pocket.  The stigma surrounding social services and public health must be destroyed if we’re to get anywhere with regards to caregiver recognition and support.  

The main site for the US Department of Health and Human Serivices (HHS.gov) has a bar across the top displaying its different categories of information and services.  The “families” tab is the most relevant and directs you to another page with sub-categories like Military Families, Health Insurance, and statistics.  The “financial assistance” category on this page contains links for child support, TANF, energy assitance, and more.  These are all fairly simple and more or less intuitively designed.  The Social Security Administration (socialsecurity.gov) contains a fact sheet on food stamps (“SNAP” as it’s called now).  

I’m stressing these assistance programs because, despite the prevailing rhetoric, they are not evil.  If you cannot afford basic necessities (even as an academic - yes, we have trouble, too!) you must see if you are eligible for a little help. There is no shame in this.  It does not make you a freeloader or a failure.  If you are, for instance, a cash-strapped student taking care of family, significant other, or children, you are entitled to have help - none of this should ever be “going it alone”!!!  So investigate social services and use whatever help you can get if you need it.

1. A blog post from the White House on its Middle Class Task Force’s iniatives for assiting caregivers:  http://www.whitehouse.gov/blog/2010/01/28/caring-caregivers
2. Administration on Aging: http://www.aoa.gov/  (from the Department of Health and Human Services)
3. Eldercare Locator: http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx
4. SNAP (food stamp) info: http://www.ssa.gov/pubs/10101.html
5.  

Caring for Body, Mind, and Soul: Creative work that helps

1. “Grief Calls us to the Things of This World” by Sherman Alexie

http://www.poets.org/viewmedia.php/prmMID/19508

1. “my father moved through dooms of love” by my man E. E. Cummings

http://www.poets.org/viewmedia.php/prmMID/15405

1. The Bonesetter’s Daughter by Amy Tan.  This novel explores an adult daughter dealing with the trials of her mother’s dementia and her family’s issues.  I particularly like Tan for her frequent work on mothers and daughters, and the redemption that she provides for her very real, very human characters.

About Me:

I’m a grad student at Rutgers, majoring in English.  I have personal experience with caregiving for ill, dying, and elderly family, all while pursuing my undergrad degrees.  This began as prep work for a presentation, but has quickly grown into a labor of love.  Whenever I “come out” about caregiving experience, I usually receive a wealth of stories from the people I’m talking with.  They will suddenly peer at me harder, sometimes with nervous laughter, and usually a breath released, and always a sad smiles...my interlocutors tend to show with their bodies, then say “Me, too....let me tell you how it was...let me share what I faced!”  It’s usually a relief to talk about this sort of thing, to break taboo about bodies, illness, death, and (most certainly) the charade of perfection that still hangs about our necks in academic circles.  

One thing I hear a lot, and say myself is “I wish I knew then what I know now”.  This sentiment has echoed so many times throughout so many conversations that I believe I am obliged to circulate some information about caregiving, grieving, academia, and the whole messy intersection of life and work.  This is a small, small part, but at least it’s out there, and hopefully it makes someone feel better about their situation.

 

Contact Me:

I don’t bite!  You may email at elizabethmreilly@gmail.com.  I’m also on academia.edu under my full name Liz Reilly (this is another great resource!).  Suggest, comment, question, share if you feel the need.  The more of “us” that talk, the better!