Monthly Archives: July 2016

Self-Care Assessment Worksheet

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At a Parkinson’s caregiver-only support group meeting last Friday, Susan Weisberg, the social worker/facilitator, shared this “Self-Care Assessment Worksheet.”

Caregivers don’t tend to practice self-care as they feel reluctant about making themselves a priority.  As many caregivers share at support group meetings, practicing self-care means you are in fact ensuring that you are able to provide better care for your loved one.

I like the broad definition of self-care that comes across in this worksheet.  For example, “making time for reflection” can be an aspect of self-care for many.  Feel free to add other examples of self-care that are meaningful to you.

When you’ve completed the worksheet, consider if there are any patterns.  Recognize that there may be some areas you are especially active in while there may be other areas you yourself feel you could try.  The worksheet instructions suggests choosing “one item from each area that you will actively work to improve.”

The worksheet is from “Transforming the Pain: A Workbook on Vicarious Traumatization,” by Saakvitne, Pearlman & Staff of TSI/ACC, published in 1996.  You can find it online at many websites, including here:

See:  www.ecu.edu/cs-dhs/rehb/upload/Wellness_Assessment.pdf

Robin

“When Dressing Is a Challenge” – adaptive clothing (WSJ, 7-7-16)

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Since this article is from the Wall Street Journal, it has more of a business and fashion industry angle than a resource slant.  But I still learned about some adaptive clothing now available.  Products include:

* MagnaReady:  men’s and women’s shirts with hidden magnetic closures and decorative buttons; magnaready.com

* CareZips:  pants with three zippers, positioned to avoid pressure sores; carezips.com

* ABL Denim:  jeans for chair-bound people with higher rear waistbands to avoid pants creeping down; abldenim.com

* Wal-Mart:  sells both ABL Denim jeans and Silvert’s adaptive pants (silverts.com)

There may be a charge to view the full article.  See:  http://www.wsj.com/articles/a-new-range-of-clothing-for-people-with-disabilities-1467829553

Robin

Medicare and Medi-Cal recipients unaware of “advance care planning” benefit

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This article, in Kaiser Health News (a news arm of the Kaiser Family Foundation), the author notes that most Medicare recipients and most Californians with Medi-Cal do not know that they are now eligible for a new health care benefit: “advance care planning” discussions with doctors. Such discussions can include those whom you want to speak for you if you are incapacitated and what your medical wishes are.

Medicare recipients can have an unlimited number of conversations with their doctor.  Medi-Cal recipients can have this conversation twice a year with their doctor.  Other insurance plans may cover these discussions.

The executive director of the California State University Institute for Palliative Care believes that anyone over 18 should have this discussion with their physician and should complete an advance care directive.

Amazingly, I’m helping a local family today with brain donation where the intended brain donor (who has Lewy body dementia and lives in a care facility) has NOT identified a healthcare power-of-attorney nor has she completed an advance care directive. At minimum, I believe we should all have a document identifying our healthcare agent.

The Institute for Palliative Care director recommends the “Five Wishes” form, which I recommend as well. We have completed this form within our family. See fivewishes.org.

There are lots of other California-specific resources online as well for completing an advance care directive or a healthcare power-of-attorney document.

See: khn.org/news/advance-planning-for-your-end-of-life-care/

Ask Emily
Advance Planning For Your End-Of-Life Care
Kaiser Health News
By Emily Bazar
July 7, 2016

Robin

Is Parkinson’s and parkinsonism on the increase?

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An interesting study was published in JAMA a couple of weeks ago. The authors, from Mayo Rochester, state: “Our study suggests that the incidence of parkinsonism and PD [Parkinson’s Disease] may have increased between 1976 and 2005, particularly in men 70 years and older. These trends may be associated with the dramatic changes in smoking behavior that took place in the second half of the 20th century or with other lifestyle or environmental changes. However, the trends could be spurious and need to be confirmed in other populations.”

If the increase in parkinsonism and PD were due to improved diagnosis, then we would likely see this effect in both men and women. But the researchers found an increased incidence in men especially.

There is research (albeit controversial), both in PD and in PSP (progressive supranuclear palsy), that smoking may suppress symptoms. Indeed, my father’s PSP symptoms began *after* he quit smoking. Another local support group member had the same experience. The rate of smoking has decreased more rapidly in men than women in the US.

Alzforum compares the rise of incidence in parkinsonism and PD with the opposite findings for dementia: “This finding is in stark contrast to a measurable decrease in Alzheimer’s disease in Europe and the United States, which researchers attribute to healthier lifestyles of late.”

Copied below is the link to the short Alzforum summary of the JAMA research paper and related papers, and the full Alzforum summary. And copied below is the link to the JAMA paper abstract.

See: www.alzforum.org/news/research-news/rising-tide-parkinsons

A Rising Tide of Parkinson’s?
Alzforum
July, 8 2016

Also see: www.ncbi.nlm.nih.gov/pubmed/27323276

JAMA Neurology. 2016 Jun 20.
Time Trends in the Incidence of Parkinson Disease
Savica R, Grossardt BR, Bower JH, Ahlskog JE, Rocca WA.
Mayo Clinic, Rochester, Minnesota.

Robin

“How to Get the Best Care From the Hospital Nursing Staff” (Wall Street Journal, 7-4-16)

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This recent Wall Street Journal article offers advice to families in interacting with hospital nursing staff:

  • Buy candy, cookies, fresh fruit, or a treat for the nursing staff.
  • “Even more important than candy is to ask questions when you don’t understand something, and ask how you can help with your loved one’s care.”
  • Be an active participant in your loved one’s care. “Family members should never feel too intimidated to question a nurse’s actions if they suspect an error or safety risk.”
  • Don’t challenge medical expertise, such as demanding an increase in pain medication above the prescribed dose. “When families get stressed they sometimes go outside their role. They want to determine care or start trying to dictate things. You have to trust the doctor had reasons, or the nurse knows when to increase the dose.”
  • Offer guidance on your loved one’s preferences that will make caring for them easier, such as taking medication with yogurt.
  • Rather than confronting the nurses, quietly seek out the nurse manager and express your concerns.

See the full article: www.wsj.com/articles/how-to-get-the-best-care-from-the-hospital-nursing-staff-1467649623

Life / Health / The Informed Patient
How to Get the Best Care From the Hospital Nursing Staff
A family’s rapport with the nursing staff can improve the care a patient receives; tips for cultivating the relationship that go beyond baking brownies
Wall Street Journal
By Laura Landro
July 4, 2016

Robin