My mother was diagnosed with pulmonary fibrosis when she was in her 70s, and for several years she did fairly well. Toward the end, as she became progressively weaker, she was fortunate in that several of her children lived nearby and ensured she had the care she needed. With only one of my six siblings out of state, someone was always available to help. And as luck would have it, two of us were nurses.
My sister and I took charge of getting the appropriate equipment, using the "right terms" that enabled reimbursement, talking-and arguing when necessary-with the various agencies to get what our mother needed. Our siblings would call us if they had any concerns or questions about care. And when we were unsure of the answer, we could call on our collective "nurse network" for help.
I realize how fortunate we were to be able to give my mom such good care in her final days. I also realize that so many families are unprepared to do the same for their loved ones. Either through lack of resources or information, or for numerous other reasons, many family members are ill-equipped to manage the care of loved ones. And when an ill family member is unable to express discomfort or explain how they feel, family caregivers may worry that they will miss important symptoms.
This month's original research, "New Acute Symptoms in Older Adults with Cognitive Impairment: What Should Family Caregivers Do?," reports on the actions family caregivers of cognitively impaired Veterans Health Administration patients took when they discovered a new symptom or change in their family member. Often these caregivers did not seek advice from a health care provider until the issue became pressing. In many instances, the action they took-and the advice they received when they sought help-was to go to the ED. While many family members were admitted, many were treated and sent home; further, many of the patients' presenting health problems were considered preventable.
There are approximately 43.5 million adults who provide unpaid care to a family member, and many are providing complex medical and nursing tasks-from medication administration via injections and tube feedings to wound and ostomy care. They often do so with minimal training and are literally home alone, trying to do the best they can. Clearly, we need to make sure family caregivers are prepared prior to discharge-that they understand their family member's diagnosis and what that means for ongoing care, how to provide care, and what changes signal the need for professional intervention.
The authors note, "If caregivers have a clear understanding and awareness of their loved ones' existing symptoms, they'll be better prepared to recognize changes and new symptoms. Early recognition makes it more likely that the patient can be treated in place and trips to the ED can be avoided."
It's a challenge-for both nurses and caregivers-to prepare caregivers for their new duties, often in a very short time span. I often wonder if it's really possible to do this-and even if it is, should that be our goal?
I've come to learn a lot about what family caregivers do, both from my own experience and through AJN's collaboration with AARP's Public Policy Institute-and now, in partnership with its Home Alone Alliance, we provide resources to help family caregivers (go to https://journals.lww.com/ajnonline/Pages/caregivercollection.aspx). But are we asking too much of family caregivers? Is it too much to ask an adolescent boy to change dressings after his mother's breast surgery? Or a 90-year-old spouse to manage his wife's ostomy care and gastrostomy-tube feedings?
My mother did not need complex wound care or gastric tube feedings, but fortunately for her, my sister and I could have administered them. Why should care for those seriously ill at home be left to chance? We need to find a better way to support families and to remove the burden of providing complex nursing care from their untrained shoulders. In the interim, the best we can do is to ensure they're prepared.