Cathy’s stroke: “Nobody noticed my husband”

                                   What to look for during a stroke

Guest post by Cathy Aumack-Bandy *

We all know someone who has had a stroke. For many, it’s a friend. For some, a relative. A spouse? A partner? A parent? Maybe even a child.

Stroke is one of those events that most people fear – and rightly so. Maybe it’s because so many times, it seems to come out of nowhere. It strikes a person down without warning. And, once it makes an appearance, stroke shows no mercy. It leaves much in its ruin. It changes people. It changes lives forever – and that’s even in the best case scenario. Continue reading “Cathy’s stroke: “Nobody noticed my husband””

Which patients does the “patient voice” represent?

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients.  Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Betty (Patient A) and Boop (Patient B).

Betty is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners after just a few short weeks of recuperation.

Boop, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, her physician fails to refer her to cardiac rehabilitation, she has little support at home from family, her cardiac symptoms worsen, repeat procedures are required, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack).  Continue reading “Which patients does the “patient voice” represent?”

“We are all patients.” No, you’re not.

by Carolyn Thomas  @HeartSisters

patientI read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*

The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

Continue reading ““We are all patients.” No, you’re not.”

When the ‘wrong’ family member gets heart disease

by Carolyn Thomas  @HeartSisters

I’ve come to learn that a common reaction to a heart attack is others’ utter shock that this could happen to “YOU, OF ALL PEOPLE!”  Women in particular report reactions like this because, generally speaking, we’re used to being the ones who take care of others, and to being the strong glue that holds our family life and relationships together.

How dare we get sick?

Dr. Wayne Sotile, in his very useful book Heart Illness and Intimacy: How Caring Relationships Aid Recovery, talks about the “family scramble” that can happen when somebody in that family is diagnosed with heart disease.  And few things can heighten the family scramble, he claims, like the “wrong” family member getting sick.  Continue reading “When the ‘wrong’ family member gets heart disease”

Caring for elderly parents: why daughters pay a heavier toll than sons

by Carolyn Thomas  @HeartSisters

At the Canadian Stroke Congress in Quebec City recently, researchers presented a review of 42 published studies that had looked at the effects of caregiving on adult children who take care of parents who have survived a stroke. More than half of the studies looked at daughters who served as caregivers.

Although this review focused on the care of parents who were stroke survivors, no woman I know with ailing parents of any diagnosis would be surprised at the review’s findings: that adult daughters suffer more than adult sons from poor relationships with aging parents who need their care.  Review author Marina Bastawrous of the University of Toronto explained:

“Adult daughters place greater emphasis on their relationships with their parents, and when those relationships go awry, it takes a worse toll on the adult daughters than the adult sons. Overall, the studies suggest that daughters suffer more than sons when they don’t get along with their ailing and elderly parents. The relationships rupture when there is less cooperation, less communication and more conflict. ”  Continue reading “Caring for elderly parents: why daughters pay a heavier toll than sons”