The Unsung Heroes of Hospice Are Family Caregivers

Nurses who find their vocation in hospice may be among the most understanding people on earth. As a nurse who has helped many, perhaps hundreds of patients transition into palliative care and hospice, I thought that I would be prepared to handle placing my father into home hospice after a stroke. At 90, my father had vascular dementia due to chronic infarctions. The call from his provider informing me that he had had an embolic stroke with a hemorrhagic component was not completely unexpected. After his anticoagulation was reversed, I knew that he was likely to have another stroke soon.

Walking the tightrope: daughter, nurse, caregiver.

I guess that’s the curse of the nurse. No false hope for me. As the nurse in the family, I walked the tightrope of caregiver, support person, and grieving daughter. The help from the hospice team was extraordinary, but the overall care and responsibility was placed on the family. It was a bit of a shock to me. I can’t imagine how families without members in health care manage.

My father did not pass his swallow test, and he had left-sided paralysis; however, he was initially able to communicate, with some effort. In fact, the priest who saw him on the first day was obviously curious as […]

2021-01-14T11:15:10-05:00January 14th, 2021|family caregiving, family caregiving, Nursing|2 Comments
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Caregivers Home Alone-And Needing Our Support

Family caregivers performing complex care.

When my mother needed care at home in her final days, she was fortunate in that two of her daughters were nurses who were familiar and comfortable in providing her care. We were fortunate in that she did not require complex care like tube feedings or IVs or ostomy care or wound care or dialysis. But many people do, and must rely on family members to do these complex tasks.

I remember how I felt as a nursing student when I had to administer one of these complicated interventions. I remember being anxious, my hands sweating as I desperately tried to recall the list of instructions I had looked up the night before.

And yet I had an instructor with me to walk me through it. Family caregivers have no such support and often don’t even get adequate instruction beforehand.

Family caregivers need more than recognition.

November is National Family Caregivers month and I can’t think of a group more in need of recognition. But while naming a month in their honor is nice to increase awareness of the more than 40 million family caregivers in this country, they need much more than that. Specifically, they need more in the […]

2019-11-18T11:16:45-05:00November 18th, 2019|family caregiving, family caregiving, Nursing, Patients|1 Comment
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Sickle Cell Disease: Complications and Nursing Interventions

Our cover photo this month features three-year-old twins Ava and Olivia. Both have sickle cell disease. In this tender shot, one twin is comforting her sister during treatment at Akron Children’s Hospital in Akron, Ohio.

How much do you know about sickle cell disease (SCD)?

Did you know:

  • that children with SCD can experience “silent strokes” that become clinically evident only as progressive neurocognitive deficits?
  • that renal complications account for 16%-18% of overall mortality?
  • or that SCD-induced priapism in boys and men is not only excruciatingly embarrassing and often painful but may require emergency treatment?

Recognizing common complications.

“Two of the greatest challenges faced by clinicians caring for patients with SCD are the lack of evidence-based guidelines…and the underuse of the few recognized disease-modifying therapies.”

In “Understanding the Complications of Sickle Cell Disease,” a CE feature in this month’s AJN, Paula Tanabe and colleagues provide us with readable and practical information about the complications of SCD.

If, like me, you are not an expert in SCD, this article is an excellent primer on how to recognize the most common complications of the disease, what treatments that are available, and where […]

2019-06-03T08:22:06-04:00June 3rd, 2019|family caregiving, Nursing, patient experience|0 Comments
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When Family Caregivers Are Unsure

Those who care for ailing family members are often faced with new symptoms or with changes in a loved one’s condition. They have to decide if it’s a natural progression of the disease and “just” another thing to manage, or if it signals a serious problem like a urinary tract infection, pneumonia, or a COPD exacerbation that needs to be addressed. Often, they end up in the ER, in some cases needlessly.

The authors of the original research CE article in this month’s issue, “New Acute Symptoms in Older Adults with Cognitive Impairment: What Should Family Caregivers Do?,” write:

“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.”

Are caregivers being adequately prepared?

As I write in the March editorial, with over 43.5 million adults providing care to family members, we need to ensure they are prepared to do so by the time their loved one is discharged from the hospital

These caregivers provide complex care—from injections and ostomy care to managing ventilators and tube feedings—and according to surveys conducted by AARP, they […]

2019-03-04T07:29:14-05:00March 4th, 2019|family caregiving, family caregiving, Patients|0 Comments
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Is This Child in Pain?

When the child is nonverbal.

Nurses regularly assess patients’ pain. It’s a much more difficult task when the patient is unable to articulate what they’re feeling or even where they hurt. How much more difficult is it when the patient is a nonverbal child with a complex medical history?

In this month’s AJN, Brenna Quinn and colleagues share their research on pain in these children. They define “children with medical complexity” as “those having a cognitive-chronological age mismatch, profound developmental delays, limited or no verbal abilities, and multisystem diagnoses, and who are completely dependent on others for care.” These kids tend to experience pain more frequently (often, daily or weekly), and are more likely to be hospitalized than are neurotypical children.

A ‘wide range of pain-associated behaviors.’

While it is often harder to assess pain in children than in adults, most children have a narrow range of “pain behaviors” that are easily identifiable. This isn’t true of children with medical complexity; some may even seem, from their expressions, to be laughing when they are in pain.

“More than 40 pain assessment tools have been developed for use in infants and children who cannot provide self-report. Despite the availability of these tools, the evaluation of pain in children with medical complexity remains challenging, […]

2018-08-13T08:09:58-04:00August 13th, 2018|family caregiving, Nursing, Patients, pediatrics|0 Comments
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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