Category Archives: Caregiving – General

“Some say that illness is morally improving, others that there is nothing good about being sick.”

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“Some say that illness is morally improving, others that there is nothing good about being sick.”

This is a long essay from the online website Aeon (aeon.co) about whether having an illness can be a positive thing or if its always a negative.  The author, Ian Kidd, a philosophy professor, thinks that “we can find a balance between bright-siding and despair.”

Professor Kidd says:

“What I want to show is that illness can be edifying, for certain people – conducive to the cultivation and exercise of various virtues. If this is right, then it is indeed a life-transforming process that genuinely contains some good.”

He also says:  “It would be a terrible failure of empathy to demand that everyone explore the character-building possibilities for illness.”

And one more quotation:

“Empathy is, in fact, the virtue most people lack, according to [philosopher Havi] Carel – especially the obliviously healthy, who take the cooperation of their body for granted. Cultivating empathy for the experience of illness means learning to think about it ‘from the inside’, from within the lived body of someone who is unwell, rather than treating that condition as a mere biological or medical problem. This means trying to see the perspective of a person battling, not only against disease, but also against others’ lack of understanding of its relentless demands – bodily, psychological, emotional and social.”

Obviously, I thought this was a thought-provoking essay.  See what you think!

Here’s a link to the essay:

aeon.co/essays/can-there-be-anything-good-in-the-experience-of-illness

Being ill, living well
Some say that illness is morally improving, others that there is nothing good about being sick. Can philosophy adjudicate?
Aeon
Ian J Kidd
November 8, 2016

On the Aeon website, there are lots of comments to the question “What lessons have you learned by being ill?”

Robin

“Who Will Care for the Caregivers?” (NYT)

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“Who Will Care for the Caregivers?” (NYT)

In September, October, and November 2016, we posted several articles about the National Academies of Science, Engineering, and Medicine’s report on family caregiving.  The report looked at the state of family caregiving in the US, where 40 million people give assistance daily to a relative or neighbor.  “Assistance” includes all aspects of caregiving such as meal preparation, bathing, toileting, dressing, medication management, and transportation.

You can find the report “Families Caring for an Aging America” here:

www.nationalacademies.org/hmd/Reports/2016/families-caring-for-an-aging-america.aspx

Today’s New York Times has an article about by a physician, Dr. Dhruv Khullar, summarizing the September 2016 report.  I didn’t find a lot new here but it never hurts to re-state the needs of family caregivers.

Dr. Khullar says:

“[The report] suggests that society’s reliance on this ‘work force’ — largely taken for granted — is unsustainable. … In 2015, there were seven potential family caregivers for every person over 80. By 2030, this ratio is expected to be four-to-one, and by 2050, there will be fewer than three potential caregivers for every older American.”

The problems identified include:

* “This volunteer army is put at great financial risk. … One in five report significant financial strain.”

* “Even worse, perhaps, is the physical and emotional toll of extended caregiving. Family caregivers are more likely to experience negative health effects like anxiety, depression and chronic disease. One study found that those who experienced mental or emotional stress while caring for a disabled spouse were 63 percent more likely to die within four years than noncaregivers who were also tracked.”

* “As overworked and underappreciated as family caregivers are, health systems, under pressure to reduce costs, increasingly rely on them to manage illness at home.”

Some approaches that the medical community can take to support and educate family caregivers include:

* Medical professionals should list the family caregiver on the patient’s medical record.

* Medical professionals should engage family caregivers in “important decisions about a patient’s treatment plan.”

* Part of accomplishing the treatment plan is assessing the abilities of the family caregiver and anticipating challenges they may find.  One assessment tool mentioned is the “Next Step in Care” by the United Hospital Fund.  (See nextstepincare.org)

* “Having counseling and support services available to caregivers, as well as respite programs to temporarily relieve them of their responsibilities, could also help.”

* “[Clinicians] could be trained in how best to educate family caregivers, and to better meet their emotional and physical needs. A nurse might demonstrate how to turn a patient in bed without risking back strain. Or the right way to deliver an insulin injection — how to pinch the skin, what angle to insert the needle — and what signs to look out for if blood sugar levels get too low.”

Here’s a link to the NYT article:

www.nytimes.com/2017/01/19/upshot/who-will-care-for-the-caregivers.html

The Upshot
Short-Handed
Who Will Care for the Caregivers?
New York Times
Dhruv Khullar
Jan. 19, 2017

Robin

“Finding Your Voice as a Patient Advocate: A Bed’s Eye View”

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“Finding Your Voice as a Patient Advocate: A Bed’s Eye View”

Local Brain Support Network member Denise shared this article from the March/April 2009 issue of the North Carolina Medical Journal.  It was written by Tiffany Christensen, who has cystic fibrosis.  Tiffany offers advice and insights to those coping with a long-term illness.

Tiffany addresses being a “medical advocate” and an “emotional advocate.”  She notes that:

“Perhaps the greatest irony of illness is that, in today’s complicated health care system, when a patient is at their worst is exactly when they need to be at their best.” 

So the patient can either learn to become his/her own medical and emotional advocate or find others who can perform these roles.

Denise was particularly impressed with Tiffany’s comments about caring for one’s emotional state, not only from the patient’s point of view, but also the care partner’s.  Tiffany writes:

“When I was gravely ill with chronic rejection, I sought out the counsel of a therapist. I have never made a wiser choice in my life. There are so many intense emotions that come with illness: feeling like you have lost your identity, the uncertainty of tomorrow, the deep loss of purpose. I was surprised to find that my family and friends were not the sanctuary for these emotions I once imagined they would be. They love me deeply, but we immediately began to protect each other from our pain; we all worried about burdening the other with heavy emotion. Being an emotional advocate might mean being the ‘safe person’ for someone experiencing a health crisis. It might be the patient herself setting boundaries with those activities or individuals which cause them undue stress. It could be as simple as creating a visiting schedule to avoid the exhaustion that can come from having too many visitors when you are trying to recover. Emotional advocacy goes hand in hand with medical advocacy; I have found it nearly impossible for one to succeed without the other.”

Tiffany offers three steps for dealing with a medical decision you find overwhelming, rushed, or with which you are unclear or uncomfortable.  These steps are:

1. Slow down the conversation.  Say “I’m sorry, I’m feeling overwhelmed.  Can I take a moment?”

2. State your concerns and ask for clarity.  Make the professional’s recommendation into a dialogue, not a decree.

3. Propose your solution, such as asking for a second opinion, or going with the least invasive procedure, first.

Here’s a link to the article:

classic.ncmedicaljournal.com/wp-content/uploads/NCMJ/Mar-Apr-09/Christensen.pdf

Finding Your Voice as a Patient Advocate: A Bed’s Eye View
North Carolina Medical Journal
Volume 70, Number 2, March/April 2009
by Tiffany Christensen

Happy advocating!

Robin

 

“On Living” – new book by hospice chaplain

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“On Living” – new book by hospice chaplain

Massachusetts hospice chaplain Kerry Egan has written a book about her talks with the dying titled “On Living.”  Next Avenue (nextavenue.com) recently talked with Kerry Egan about her book.

The interviewer asked:  What message do you hope people take away from the book?

Here is part of Kerry Egan’s answer:

“People who are dying and people who are caring for people who are dying are just normal human beings.  In our culture we have such a fear of death, and that bleeds over to people who are in the process of dying. And how very awful it must be to be doing this frightening thing — not everybody is frightened, but some are — and really want your friends and family to be with you. You’re lonely and you don’t feel good and you’re sick and you want the people you love to be with you and they’re afraid of you.  I hope people reading the book will come to this realization that there is nothing to be afraid of when people are dying. … And the caregivers of people who are dying are not saints or angels. They are just regular people, too, who also need you. If you’re afraid, that’s fine, but get over it and show up.”

Here’s a link to the Next Avenue article:

www.nextavenue.org/hospice-chaplain-talks-dying/

Hospice Chaplain Writes About Her Talks With the Dying
What she heard was unexpected, the ‘On Living’ author says
Next Avenue
By Emily Gurnon, Health & Caregiving Editor
January 11, 2017

Robin

Article about a woman who lost her mom to PSP and her dad has re-married

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Article about a woman who lost her mom to PSP and her dad has re-married

A local Brain Support Network member just sent me a link to this un-dated article.  It might’ve been posted in December 2016.  It’s on the website “BLUNTmoms” (bluntmoms.com).  It’s an article by a woman who lost her mom at the age of 61 to PSP (progressive supranuclear palsy) about four years ago.  Her dad got re-married about 18 months ago.

The daughter admits she wasn’t very happy about the dad re-marrying.  But then describes a sweet story about everyone attending the state fair in October, with the new wife being very engaged with the daughter’s children.  The daughter says:

“Watching her with my children that day at the fair, I was overwhelmed by an aching sadness for the grandmothering my mom never got to do. But I also marveled at how life offers new beginnings, for all the premature endings. I felt gratitude for this woman who brought my dad back from the brink of despair. And I saw the beauty in the opportunity life has given this woman to bond so deeply with these children…especially my baby, my mom’s namesake.”

Here’s a link to the full article:

www.bluntmoms.com/holiday-season-celebrate-joy-memories-alike/

This Holiday Season Celebrate Joy And Memories Alike
Written by Joanna McFarland Owusu (guest author)
Blunt Moms
Mid-December(?) 2016 

Happy reading,
Robin