Category Archives: Living with a Neurological Condition

“Details of the Heart” (requests made by a person with health issues)

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One of our local support group members, Marty, sent me information on this blog post today.  Within this blog post is a list called Details of the Heart.  This list was created by a geriatric care manager, Stacey Gordon, for a client named Ann.  Ann used this list in screening potential candidates for a home care aide.  Ann needed to hire an aide to help her in the last year of her life.  The list addresses what was important to Ann in an aide and caregiving companion — “open communication, sensitivity, fairness and patience.”

“Ann so related to the list of ‘Details of the Heart’ she recited it aloud to potential caregivers to gauge their reaction. Once she hired her caregiver, she revisited the details throughout the caregiving process.”

Many of the nine items on the “Details of the Heart” list are
appropriate for anyone — whether they are hired aides, family
members, or friends — who wants a caring relationship with another person who may have health issues.

I’ve copied the list below from Stacey Gordon’s blog post.  I think
that’s the key to the blog post but if you’d like to read the entire
post, see:

www.huffingtonpost.com/stacey-gordon/end-of-life-conversation-caregivers_b_2547547.html

Robin

 

“Details of the Heart”
by Stacey Gordon
Posted: 01/30/2013 6:56 am
Huffington Post

1. Please make eye contact with me, and look at me often. Don’t ever make me feel invisible.

2. Please ask me before you touch my body, especially in sensitive places.

3. Please have a tremendous amount of patience with me.

4. Please tell me when you are worried about me, and why. Don’t tell others first.

5. Please help me keep my mind active. Talk to me, read to me, engage me on topics that interest you and ask me about my interests.

6. Please remember that I am an adult, and ask me to choose how to plan my days.

7. Please call me if you will be late, or if you are sick and help me
by calling one of our substitute caregivers. Remember that I cannot be left alone.

8. Please know that I will respect your privacy and I would like you to respect mine.

9. Please know that I thank you for caring for my body and my heart.

 

Leapfrog Group’s Hospital Ratings

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In a recent article in the Wall Street Journal on how patients are receiving better treatment in hospitals and from doctors, the organization Leapfrog Group is mentioned in a short paragraph:

Vetting a Hospital Gets Easier
Data on hospital quality and safety has been available online for some time, but not in a very user-friendly way. This year, the Leapfrog Group, a coalition of public and private purchasers of employee health coverage, graded hospitals, from A to F, based on measures of patient safety. Some hospitals got poor grades and took issue with the methodology, which was subsequently altered slightly. Leapfrog CEO Leah Binder says it is “the toughest standard-bearer and provides the most complete picture of a hospital’s quality and safety.” The list of 1,200 hospitals, released Dec. 4, ranks only 89 of them as top facilities. Patients can use a free website or a mobile app to compare hospitals based on overall safety or based on selected procedures such as heart bypass surgery.

You can search by state, city/state, zip code, and specific hospital. Here’s a link to the ratings of California’s hospitals:

www.leapfroggroup.org/cp?frmbmd=cp_listings&find_by=state&city=&state=CA&cols=oa

Unfortunately, lots of hospitals “declined to respond.”

Robin

How-to videos – getting out of bed, walking with a walker, etc.

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This series of how-to videos was recently produced by CurePSP (psp.org).  These videos are not specific to progressive supranuclear palsy (PSP) but are applicable to anyone coping with a movement disorder.  The videos are available on CurePSP’s YouTube site:

www.youtube.com/user/CurePSPHowTo

CurePSP gave me a bunch of DVDs of these videos for our October 2012 atypical parkinsonism symposium.  I just got around to watching one of the DVDs.

There are 41 videos in the series.  The videos are divided into those which show someone how to do the activity on his/her own and show someone (family member, caregiver, aide) how to help with this activity.  The videos are short — 30 seconds to a couple of minutes.  The activities are broken down into small segments such as walking with a rolling walker and turning with a rolling walker.

Some of the 41 topics include:

* Getting Out of Bed
* Walking with a Rolling Walker
* Walking with a Cane
* Approaching a Chair
* Common Mistakes When Getting Out of a Chair
* Correctly Getting Out of a Chair
* Using the Power Stance – when brushing your teeth, for example
* Getting into Bed without a Handrail
* Getting Dressed
* Grooming Techniques
* Getting Up From a Fall

There are also some videos with strengthening exercises, upper body exercises, and flexibility exercises.  (My father’s physical therapist and occupational therapist gave my father the same exercises.)

Robin

“Cost of Living Longer” (WSJ 10-26-12)

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The basic point of this Wall Street Journal article on “The Cost of Living Longer” is:  “People who identify the specific services their loved ones need, haggle aggressively on price and explore alternative-care options can save money—or at least get more care for the money they do spend, experts say.”

One alternative-care option mentioned in the article is “buying a medication-monitoring system rather than pay for a nurse to do so, a service that costs $347 a month on average, according to MetLife. The website e-pill.com offers several different choices.”

One care option not mentioned in the article is home care.  The article’s author seems to not be aware that there’s a difference between “home care” and “home health (care).”  The term “home health” refers to a skilled need from a healthcare professional.  The term “home care” refers to hands-on personal care and light housekeeping.  There are lots of home care agencies out there; they are not closely regulated like the home health agencies are.

IMPORTANT!  When considering options for home care agencies, home health agencies, adult day care, assisted living facilities, care consultants and geriatric care managers, look in to the organizations or individuals who attended educational conferences on the disorder of interest.

Here’s a link to the article:

online.wsj.com/article/SB10001424052970203937004578079184108523030.html

FAMILY FINANCES
Wall Street Journal
The Cost of Living Longer
By Kelly Greene
October 26, 2012, 5:12 p.m. ET

Robin

“The Most Important Conversation You’ll Ever Have”

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Many of you have heard of Ellen Goodman’s “Conversation Project,” which is an attempt to get families to share their wishes about the end of life. This is a good article in O Magazine (oprah.com) with a question and answer with Ms. Goodman.

www.oprah.com/relationships/how-to-talk-about-dying-ellen-goodman-the-conversation-project

The Most Important Conversation You’ll Ever Have
No one wants to bring up dying, but talking with your loved ones about the final stage—theirs and your own—is essential.
O Magazine
September 17, 2012