“H” from Chicago, I heard you when you joined a lively discussion over hospice at home here a couple of weeks ago and asked, “where can family members get the training to do all the nursing tasks?”
In the comments section, many readers wrote in to say that caring for relatives at the end of their lives was a duty and a privilege. Others said they were unprepared for the physical and emotional burdens of doing so.
Your question stood out because of its practical character. Do caregivers have to figure out how to handle all these complicated medical issues on their own? Or is some help out there?
For an answer, I called two of the authors of “Home Alone: Family Caregivers Providing Complex Chronic Care,” put out by the United Hospital Fund and the AARP Public Policy Institute. That study recently made headlines by reporting that 46 percent of the nation’s 42 million caregivers handle medical and nursing tasks such as giving injections, caring for wounds or administering I.V.s.
Susan Reinhard, senior vice president and director of the AARP Public Policy Institute, sighed when I reached her, and said “this is a huge gap,” referring to a notable absence of available training in demanding caregiving tasks.
To the extent training exists through local agencies on aging, disease-specific organizations or social service groups, it deals mostly with so-called “activities of daily living” — helping someone bath, dress, eat, or use the bathroom — not the demands of nursing-style care, Ms. Reinhard observed.
Really, this kind of training should be the responsibility of health care providers, but doctors and nurses often give only cursory, unsatisfactory explanations of complex tasks that fall to caregivers, said Carol Levine, director of the Families and Health Care Project of the United Hospital Fund.
That leaves the burden on caregivers to be assertive and ask for help, these experts agreed. If someone is hospitalized and ready to return home, they suggest asking a nurse or another provider “show me what you are doing so I can learn how to do it,” and then asking “now, watch me do it and tell me if I am doing it wrong or right.”
Don’t give up after the first time if you feel awkward or uncomfortable. Ask to do the task again, and ask again for feedback.
No videos or written manuals, can substitute for this one-on-one, hands-on instruction. If you don’t get it to your satisfaction before a loved-one is ready to go home, don’t sign the form that says you have been given instructions on what to do, Ms. Reinhard advised. The hospital is legally obligated to ensure that discharges are safe, and this operates in your favor.
The same goes for the pharmacy: don’t sign that sheet that the pharmacist hands you indicating that you have been adequately informed about the medications you are purchasing. If you are concerned about the number of prescriptions, what they are for, their possible side effects and whether all are necessary, ask the pharmacist to sit down with you and go over all this information. Again, don’t leave until you are satisfied.
Often, caregiving tasks will change as someone with a chronic condition like Parkinson’s disease or heart failure becomes more frail. Should this happen, consider calling a home care agency and asking for a nurse to come out and teach you how to administer oxygen or help transfer someone safely from a bed to a wheelchair, Ms. Reinhard said.
You may want to videotape the session so you can view it several times; most of us don’t pick these skills up right away and need repeat practice, Ms. Levine said.
Be as specific in your request for help as possible. Rather than complaining that you are overwhelmed, say something along the lines of, “I want to make sure I know how to clean this wound and prevent an infection” or “I need to know what texture the food should be so I can feed mom without having her choke,” Ms. Levine suggested.
Her organization has prepared comprehensive materials for caregivers called “Next Step in Care.” While the focus isn’t on nursing-style caregiving tasks, three might be useful: a self-assessment tool for family caregivers, a medication management guide, and a guide to hospice and palliative care.
Other helpful materials are few and far between. Ms. Levine’s staff identified a $24.95 American Red Cross training manual for family caregivers that has a DVD explaining the mechanics of transfers and a few other complicated tasks. Also, some videos are available for free at www.mmlearn.org, a Web site that says its mission is to provide caregivers with online training and education.
Asked about model programs, Ms. Reinhard said she knew of only one: the Schmieding Home Caregiver Training Program in Arkansas, operated by the Donald W. Reynolds Institute on Aging of the University of Arkansas for Medical Sciences. The Schmieding program trains family caregivers as well as professional caregivers who work in people’s homes or nursing homes.
On the family side, it offers eight hours of instruction in “physical needs” associated with caregiving — managing incontinence, skin care, turning someone regularly in bed, using adaptive equipment, transfers from a bed to a wheelchair, helping patients remain mobile, and more. Classes are offered at five sites and four more are planned in the next several years, said Robin McAtee, associate director of the Reynolds Institute on Aging. If people, churches or senior centers want the instruction, which is free, Schmieding nurses will take the program to them. One-on-one instruction for tasks is also available on request.
A separate eight-hour program is available for caregivers dealing with dementia, who have additional concerns.
At a Web site called Elder Stay at Home, Schmieding sells a package of materials (three DVDs and a booklet, for $99) summarizing the content of its family caregiver training program. Separately, it has begun selling its curriculum for paid caregivers, and programs in California, Hawaii and Texas are among the first buyers. The University of Arkansas for Medical Sciences also has received a $3.7 million innovation grant from the government to expand the caregiver training program more broadly and develop online training materials.
Ms. Reinhard said AARP would like to see Schmieding-style programs rolled out across the country and begin to offer structured, reliable support to caregivers now providing nursing-style care in homes with little or no assistance.
Editor’s Note:
Correction: An earlier version of this post contained an incorrect spelling of the first name of the director of the Families and Health Care Project of the United Hospital Fund. She is Carol Levine, not Carole Levine.
