Renata Louwers has a hard time getting her blood drawn. The needle, the pinprick of pain, the viscous liquid flowing out of her arm 鈥� they make her queasy.
So, Louwers had to steel herself when her husband, Ahmad Khoshroo, developed metastatic bladder cancer four years ago at age 72.
Within months, as a tumor pressed on his spine, Khoshroo was taking heavy-duty opioids and Louwers was administering his medications. When he developed blood clots following a stay in intensive care, she injected a blood thinner into his belly.
Figuring out what to do as her husband鈥檚 eventually fatal disease progressed was a nightmare. Louwers remembers getting hastily delivered, easily forgotten instructions from hospital nurses and, later, limited assistance from a home health agency. 鈥淚t wasn鈥檛 much, and it was incredibly hard,鈥� she said.
Now, groups around the country are mobilizing to help family caregivers like Louwers manage medications, give injections, clean catheters, tend to wounds and perform other tasks typically handled in medical facilities by nurses or nursing assistants.
In December, 15 organizations joined a new national consortium, the , devoted to providing better training and instructional materials for family caregivers. Founding members include the AARP Public Policy Institute, the Family Caregiver Alliance, the United Hospital Fund and the Betty Irene Moore School of Nursing at the University of California, Davis.
This week, the alliance released a series of 10 short videos (five each in English and Spanish) designed to help caregivers deal with seniors who use canes or walkers and need help getting up or down stairs, into a wheelchair, or in and out of a tub or a shower.
Two of the videos deal with falls 鈥� the most common cause of injury among older adults.
This summer, nine videos on wound care will be added, including dealing with newly sutured wounds, bed sores, cellulitis and diabetic foot care, among other topics.聽By the end of the year, another 20 videos should be available.
Potential topics include nutrition, the use of specialized equipment such as nebulizers, feeding tubes and oxygen tanks, and a revised series on medication management 鈥� a topic profiled in for the alliance.
Organizations across the country will be free to put the videos on their websites. The goal is to disseminate them as widely as possible and 鈥渂ridge the gap between what family caregivers are expected to do and what we actually teach them to do,鈥� said Susan Reinhard, director of AARP鈥檚 Public Policy Institute.
That gap was highlighted in 2012, when AARP and the United Hospital Fund鈥檚 Families and Health Care Project published a on medical and nursing tasks undertaken by caregivers. It found that 46 percent helped patients who required specialized care, but few got adequate training.
After the study鈥檚 publication, AARP started compiling educational materials from around the country that addressed caregivers鈥� increasingly complex responsibilities. There wasn鈥檛 much available.
With the United Hospital Fund, AARP convened focus groups and asked people what would be helpful. Don鈥檛 overwhelm us with information; break the material into chunks focusing on concrete tasks, they said. And tell us a story that we can relate to, involving people like us 鈥� not doctors and nurses, they requested.
Ongoing research into what works, from family caregivers鈥� perspective, will be an integral part of the Home Alone Alliance. And while videos will be a core component of the consortium鈥檚 offering, they won鈥檛 be the only one.
鈥淚t may be that within certain Asian communities, a video isn鈥檛 the best approach 鈥� we may want to partner with Asian resource centers and do 鈥榯rain the trainer鈥� sessions about caregiving,鈥� said Heather Young, founding dean and a professor at the Betty Irene Moore School of Nursing at UC Davis.
In African-American communities, churches are a pillar of caregiving support and the focus may be on 鈥渉elping congregations build their capacity,鈥� Young said. 鈥淵ou can equip one person at a time all you want, but if there isn鈥檛 a broader context of support, a net around them, it鈥檚 very difficult to sustain the caregiving.鈥�
Meanwhile, alliance members are developing plans for disseminating materials. The Family Caregiver Alliance will incorporate them in a new online platform for caregivers, 鈥� a source of support and resources that is聽still under development.
FCA began producing videos for family caregivers about four years ago; its and have been watched by about 500,000 people to date. 鈥淲e鈥檙e going to a more visual information exchange society,鈥� said Kathleen Kelly, FCA鈥檚 executive director.
The U.S. Department of Veterans Affairs partnered with AARP in producing the alliance鈥檚 video series on mobility. It plans to post the videos on the VA鈥檚 聽and encourage their use by patients discharged from rehabilitation and those served through its home-based primary care program, said Meg Kabat, national director of the VA鈥檚 Caregiver Support program.
Recognizing the value of videos, the VA鈥檚 Office of Rural Health has created a and a five-part series on managing challenging behaviors associated with dementia. An extensive compilation of materials on various health conditions, , is also online, and another valuable resource for caregivers.
What鈥檚 missing from the current offerings is advice on dealing with older adults who are frail and have multiple conditions. Catherine Yanda鈥檚 91-year-old mother, Mary, is in this situation: She has end-stage dementia, sarcopenia, heart disease, incontinence, frequent skin tears and difficulty swallowing 鈥� a set of problems that Yanda has had to figure out how to manage, largely on her own.
鈥淚 learn what to do as it happens,鈥� said Yanda, who turns to FCA鈥檚 website for support and websites for nurses for information. 鈥淵ou go to whatever site helps you deal with the problem you鈥檙e trying to address. I鈥檓 lucky because I have the belief system that I can do it. But for some people, it鈥檚 just too much.鈥�
We鈥檙e eager to hear from readers about questions you鈥檇 like answered, problems you鈥檝e been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.
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