I’m lucky to have long-lived relatives: grandparents, parents, and their siblings have lived or are living well into their ninth and tenth decades. Yet, aging and the caregiving it entails come to each of us. At a post-workshop dinner among chief academic officers not so long ago, for example, everyone at the table (male and female) was dealing with eldercare along with their professional responsibilities. Eldercare affects faculty and staff colleagues, too, though eldercare support captures less campus attention than resources for childcare. The 2016-17 Higher Education Research Institute faculty survey noted 10-20% of peer comparison faculty reporting up to 8 hours per week devoted to eldercare, with smaller percentages reporting up to and beyond 20 hours per week. The topic has garnered mentions in coverage of college and university students’ multiple at-home challenges during the COVID19 pandemic. Demographic trends, resource constraints, and the disproportionate clustering of coronavirus cases in care facilities are likely to contribute to more eldercare demands in years ahead.
My goal in this essay is to share some things I have learned over the past academic year, one in which multiple events made eldercare a significant focus, with hope that the suggestions may be useful for the growing proportion of persons in our campus communities who are or will be addressing care of elders.
1. Learn about the relevant ordinances of your town, county, and state regarding family medical leave. While the federal Family and Medical Leave Act provides for twelve weeks, unpaid, job-protected leave, state and local laws–and campus policy–may provide stronger benefits. In my university’s state, for example, employees may take up to 12 weeks paid family leave; the city has more expansive eligibility definitions than the state. It is important to ask about how federal, state, and local provisions overlap (i.e., how they do or do not run concurrently) and gain clarity on how intermittent leave (i.e., non-consecutive periods of time away) might work for you. You can always speak confidentially to the benefits specialist at your campus to inform the leave request you might need to make to your supervisor, dean, or vice-president. Even if your becoming a primary care-giver is not a solution, you will need some time to respond to medical events and to engage the process of finding eldercare assistance.
2. Learn about the resources available through your campus’s employee assistance program (EAP). If you have explored your EAP website, you know that there is an abundance of information about a variety of topics, including personal wellness, access to legal or counseling resources, as well as childcare and eldercare. As with the help an EAP can provide regarding childcare availability, you can talk confidentially with a resource person who can clarify what kind of eldercare you are interested in (e.g., adult day care, assisted living, home health care, hospice care, nursing home, or retirement communities and senior centers). You do not need to provide any personal information about your family member in order to receive a concise list of support agencies and/or facilities with openings available in the specific time period and geography in which you are interested. In addition, the resource person can send an informative set of materials from reputable agencies that include definitions and costs, questions to ask, checklists to keep in mind in talking with providers, factors to consider in decision-making, and suggestions regarding moving a family member to a care facility.
3. Take advantage of the expertise of hospital social workers. If a stroke, fall, or other medical event precipitates your need to consider care assistance and your family member needs rehabilitative care, the hospital may well make a direct referral. You will want to be aware of the parameters (e.g., time limits, geography) or intersection of Medicare and other health insurance in this process. The social worker, for example, can identify agencies serving the town or county in which you need them. A distinction to know with respect to home care is between agencies that employ their staff members (such as, for example, Home Instead or Visiting Angels) and those that are referral or placement agencies for caregivers who work independently (such as, for example, Caregiver Connection or Choice); you or your family member may have a preference as to what type of employment relationship you wish to engage.
Three key factors to keep in mind: (a) there is very high demand for caregiver services, so it may take a few weeks to locate care support; (b) the first step in the process is a 60-90 minute assessment appointment, in which a case manager visits the home and talks with family members in order to facilitate a good caregiver match and outline a care plan; and (c) the initial match or matches might not work. The assessment conversation is detailed and potentially emotional, particularly for those of a generation or background where matters of home have been very private. The conversations are also very informative and, at least in my experience, case managers are empathetic and supportive resources. If an assessment meeting in the home is not feasible for the elder, the meeting with the case manager can take place at a nearby location.
4. If possible, make multiple, personal visits. (If that is not possible, know that there are persons with titles like “senior options counselor” – analogous to an insurance broker, paid by the community or home, so at no cost to you – who can assist with helping you to locate care. An example is rightfitsenior.com and www.caycare.com.) Depending upon urgency, you can also visit a location that does not have current openings, with the possibility to proactively join a waitlist there.
The visits are an important learning process. At the exploratory stage, you need not make appointments in advance but can just stop by for information; you can choose to share your own name and contact information, with only general information about the family member who needs care. Even with an impromptu arrival, you are likely to be welcomed, offered materials to take home, and given a look around to see the type of room available (e.g., single/private, single bedroom/shared bath, shared bedroom/bath, etc.), the program offered and other facilities at the care center, and the “feel” of the place and its staff-at-work. If you can, visit again, and–as you learn–test, and then trust, your feelings. Front office staff (titles vary: community relations director, marketing director, center director) tend to be very supportive and, should you establish strong learning connections, you might choose to stay in touch with them over several months’ time. By staying in touch, I learned about respite care, travel back-up options, and the relative importance of program offerings to memory care decision-making.
I also learned that a documented diagnosis by a geriatric specialist would be part of admission. Distinguishing what a geriatric psychologist as opposed to a geriatric medical specialist entails, as distinct from the role of the hometown primary care provider, and working through the processes of a large health care system can require patience. The specialists are also good sources for additional resource materials.
Given the impact of COVID19 on care for elders, some additional questions to consider include: (a) is the level of agency or facility staffing, personal protective equipment (PPE), and rapid testing sufficient to mitigate risk? (b) what is the agency or facility protocol for notification of staff or client/resident illness, testing and reporting, quarantine or lock-down? (c) when facility visiting is restricted, what are provisions for reducing isolation of residents (e.g., outdoor visit reservations, cold weather visit alternatives, visit restrictions lifted for persons under hospice care)? A helpful resource, irrespective of whether your elder has a dementia diagnosis, is available from the Alzheimer’s Association (https://www.alz.org/help-support/caregiving/coronavirus-(covid-19)-tips-for-dementia-care).
5. Even if I were not a communication studies professor, the adage would still apply: “Communicate, communicate, communicate.”
- Pay attention to how medical care providers talk to your family members. You might choose to nip age-ism in the bud if providers begin to talk with you rather than the spouse or life-partner about the person’s care. If cognitive, emotional, or physical issues mean that you need them to communicate with you, ask for an appropriate adjustment.
- Learn as much as you comfortably can about your family member’s legal, financial, and personal arrangements. Know where key documents (including POLST or other medical directives, and wills) are located; learn of their preferences regarding services, funeral home, and burial arrangements; and have appropriate power of attorney documents, keys to the home and safety deposit box, and computer passwords.
- Figure out how to keep siblings, or other key family members, in the loop. Consider: (a) preparing laminated “fluorescent” emergency cards with all family or other contact information for your parents’ home and car; (b) gathering and sharing a calendar of sibling “in town” or “out of town” dates, so that you know – at least for those within reasonable driving distance – who can respond in an emergency situation; (c) obtaining contact information for parents’ immediate neighbors, who can be crucial partners; and (d) sharing a spreadsheet of information about the care agencies or centers you visit, along with the EAP or other resources handouts, with key family members.
- Use social media. Unexpectedly, text messaging turned out to be very important in my parent situation – from alerts about visits to notes when a home care trial was going south, from details about health care appointments to daily check-ins, and much more. Longer emails may become crucial if a primary caregiver’s being homebound with the elder makes in-person conversations difficult. Since going into COVID19 lockdown in March, care centers have used platforms such as FaceTime to supplement telephone calls. You or a family member might start a video group, such as MarcoPolo, to strengthen connections and provide updates in fun ways. A shared Google or Instagram daily photo album is another way of just knowing everyone is okay.
- It is also very important to recognize that there is a grieving process that accompanies the onset of home care or the transition of a life-partner or parent moving into a care center; multiple forms of communication can help.
During my time as a dean, I was supportive of colleagues who let me know they were addressing eldercare issues. What I learned this year has taught me that I could have been a more effective dean with stronger knowledge of resources and processes. I hope that the sample list of resources below will be helpful to you and to your support of colleagues, family, and friends, if only to reinforce that you and they need not go it alone.
Eldercare is a hard process. Along the way, you will likely hear more stories of years past than you might have heard before: listen carefully, keep some notes, value them. Take moments to look together at photo albums, or picture books of places visited. Keep connected to family and friends. Take walks. Find joy: Fall 2019-Winter 2020 was quite beautiful in the Pacific Northwest; I took cell phone pictures on my walks, snuck in a few of my parents when they weren’t looking, and now treasure that little album. May you, too, find treasures amidst the challenges.
Resources
Alzheimer’s Association. “Choosing a resential care facility.” www.alz.org, 2015.
Assisted Living Federation of America. “Guide to Choosing an Assisted Living Community.” www.alfa.org/albrochure.
Boss, Pauline. “Navigating Loss Without Closure.” https://onbeing.org/programs/pauline-boss-navigating-loss-without-closure/. December 13, 2018.
Bowen, Patricia. “Ten Questions to Consider When Moving a Parent into Assisted Living.” www.GoldenYearChanges.com.
Carpenter, Molly. Confidence to Care: A Resource for Family Caregivers Providing Alzheimer’s Disease or Other Dementias Care at Home. Home Instead Press, 2013.
Chaudhuri, Saabira. “The 25 Documents You Need Before You Die.” Wall Street Journal, 2011; https://www.wsj.com/articles/SB10001424052702303627104576410234039258092.
“Complaints of a Dutiful Daughter.” Documentary film: https://vimeo.com/ondemand/138538.
Hodges, Marian O. and Anne P. Hill. Help is Here: When someone you love has dementia. Providence Health and Services – Oregon, 2014.
“In Touch® Tips for Moving your Family Member to Memory Care.” 2011.
National Center for Assisted Living. “Checklist for Consumers and Prospective Residents.” 2015, www.ncal.org.
National Institute on Aging. Understanding Memory Loss: What to do when you have trouble remembering. 2010.
Francine Russo. They’re Your Parents, Too!: How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy. Bantam, 2010.
Saavedra, Mary Jo. Eldercare 101: A Practical Guide to Later Life Planning, Care, and Wellbeing. Rowman and Littlefield, 2016.
U.S. Department of Health and Human Services, National Institutes of Health, National Institutes on Aging. Home Safety for People with Alzheimer’s Disease. 2010.
Wan, William. “Pandemic isolation has killed thousands of Alzheimer’s patients while families watch from afar.” Washington Post, September 16 , 2020. https://www.washingtonpost.com/health/2020/09/16/coronavirus-dementia-alzheimers-deaths/?arc404=true.
