Category Archives: Caregiving – General

Contemplative Caregiving (NYT, 1-11-13)

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This article is from a recent “New Old Age” blog in the New York Times.  It’s about contemplative caregiving — an approach advocated by Jennifer Block, who is a former director of the well-known Zen Hospice project in San Francisco.  Here are a few highlights from the short transcript provided by the NYT of the interview with Ms. Block:

“People are for the most part unprepared for caregiving. They’re either untrained or unable to trust their own instincts. They lack confidence as well as knowledge. By confidence, I mean understanding and accepting that we don’t know all the answers ­ what to do, how to fix things.”

“Also, we live in a fast-paced, demanding world that says don’t sit still — do something. But people receiving care often need most of all for us to spend time with them. When we do that, their mortality and our grief and our helplessness becomes closer to us and more apparent.”

“Another skill is to become aware of how much we receive as well as give in caregiving. Caregiving can be really gratifying. It’s an expression of our values and identity: the way we want the world to be. So, I try to teach people how this role benefits them. Such as learning what it’s like to be old. Or having a close, intimate relationship with an older parent for the first time in decades. It isn’t necessarily pleasant or easy. But the alternative is missing someone’s final chapter, and that can be a real loss.”

“I think every caregiver needs to have their own caregiver — a
therapist or a colleague or a friend, someone who is there for them and with whom they can unburden themselves.”

You can find the full NYT article here:

newoldage.blogs.nytimes.com/2013/01/11/taking-a-zen-approach-to-caregiving/

New Old Age: Caring and Coping
New York Times
Family Relationships
Taking a Zen Approach to Caregiving
By Judith Graham
January 11, 2013, 6:52 am

For further info, check out Ms. Block’s website (jenniferblock.org) and her new SF-based organization, Beyond Measure School for Contemplative Care (carebeyondmeasure.org).

Robin

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

“Shopping for the Right In-home Help”

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This article is from the Today’s Caregiver magazine (caregiver.com) and it’s on shopping for in-home help. I especially like the suggestion to write a job description.  Here’s a link to the article:

www.caregiver.com/articles/general/shopping_for_right_in_home_help.htm

Shopping for the Right In-home Help
By Eileen Beal, MA
Today’s Caregiver Magazine, caregiver.com
January 15, 2013

The full article is copied below.

The article recommends these two terrific resources:

#1 “A Family Caregiver’s Planner for Care at Home” by United Hospital Fund (available in English, Spanish, Chinese, and Russian)

www.nextstepincare.org/uploads/File/Guides/Care_Planner/Care_Planner.pdf

#2 “Hiring In-Home Help” by Family Caregiver Alliance

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407

Robin

www.caregiver.com/articles/general/shopping_for_right_in_home_help.htm

Shopping for the Right In-home Help
By Eileen Beal, MA
Today’s Caregiver Magazine, caregiver.com
January 15, 2013

When Mom and Dad are struggling to keep up with the chores, activities or medications that help them maintain their independence and health, the solution to their situation (and your concerns) could be as simple as bringing in someone to provide in-home care for a couple of hours a day.

But not before you and they have had a frank discussion about the kind of help, support and services they need – and will accept.  “You want them to feel they are a part of the decision-making process, that their wishes and wants are honored and respected,” says Mary Ellen “Mel” Roberts, LCSW, a certified care coordinator at Oklahoma City-based Elder Care Solutions.

Start by asking your loved ones (and yourself) the following questions:

* What days and times, and in what situations, might you need help?

* How much money is available to pay for outside resources, and will your insurance – including Medicare or Medicaid – cover any costs?

Home care vs. home health aide

Home care aides provide assistance with housekeeping and chores (meal preparation, shopping, errands, etc); socialization and companionship; and may also provide some personal care (bathing and grooming).  In some areas, they are called personal care assistants.

Home health aides – increasingly certified nursing assistants (CNAs) and/or state tested nursing assistants (STNA) – provide medically-related care (check blood pressure and glucose levels, dress dry wounds, empty colostomy bags, etc.); assist with therapeutic treatments prescribed by a physician; supervise medication administration; etc.

“The client’s needs and the aide’s skill-level determine what the aide’s [hourly] fee will be.  The more skills the aide has, the higher the cost,” says Debbie Adams, RN, the Director of  the Cleveland, Ohio-based Western Reserve Area Agency on Aging’s Community Services and Support Program.

Write a job description

Using the information you’ve gathered from discussing and assessing your loved ones’ needs, write a detailed job description.  Care expectations vary from client to client, so having everything in writing means everyone knows, and meets, expectations,” says Lucy Andrews, the nurse/CEO at Santa Rosa, California-based At Your Service Home Care.

A detailed job description doesn’t just “clarify expectations;” it should also influence whether to hire on your own or through an agency.

With an agency, the aide has been trained, screened and checked  – for everything from DUIs to TB –and bonded.  And they are supervised. “That,” says Adams, “includes surprise home visits.”

But there are other benefits, too.  “Clients have back-up if the scheduled caregiver can’t be there.  And an agency handles all the paperwork:  reimbursement forms, payroll, taxes, workers compensation, insurance,” says Andrews.

“And,” adds Roberts, “if you aren’t happy with the person, all you do is call the agency and say, ‘This isn’t working.’”

Hiring on your own means asking people you trust for word-of-mouth referrals and/or posting help wanted ads.  Increasingly, you can do that at on-line sites like the PHI National’s Matching Services Project (phinational.org/policy/resources/phi-matching-services-project).

And you’ll also be doing the screening, interviewing, supervision, scheduling and paperwork.   But, there’s an upside, too.  “It’s usually easier to partner with the person who’ll be coming in, and you will usually be paying less, too,” says Adams.

Do a thorough interview

If you decide to go through an agency, use the questions at the Eldercare Locator (eldercare.gov) to screen and vet the agency.  Then, use the following questions to interview the candidates they suggest and/or you find on your own:

* Can you provide me with your full name, address, phone number, current photo ID and Social Security number so that I can run a background – including credit – check? (If you’re interviewing an agency candidate, request contact information only.)

* Can you (your agency) provide me with copies of current documentation related to personal insurance, bonding, workers compensation, and your current health status (TB test, immunizations, etc.)?

* Can you (your agency) provide me with current documentation related to specific services (dementia care, CPR, etc.) you are trained/certified to provide?

* Can you (your agency) provide me with references related to past clients and employers.

* How long have you been providing care?

* Why did you leave your last position?

* What are your expectations if I hire you?

* What hours and days will you be available?

* What hourly rate do you expect, and how do you expect to be paid?

* How do you like to get feed-back and suggestions?

* What do you like and dislike about home care?

You should also ask situation-specific questions, such as: Since my mother is Jewish, can you prepare kosher foods?  Since my father doesn’t speak English well, what’s your competency in (fill in the blank)?  Since we get a lot of snow here, how reliable is your car?

In addition, download the United Hospital Fund’s “Home Care: A Family Caregiver’s Guide” (www.nextstepincare.org/uploads/File/Guides/Home_Care/Guide/Home_Care.pdf) and “A Family Caregiver’s Planner for Care at Home” (www.nextstepincare.org/uploads/File/Guides/Care_Planner/Care_Planner.pdf).

Both are full of tips and strategies for running a good interview, and for addressing the challenges that could come with employing an in-home caregiver.

Additional sources and resources

Web sites

AARP: Needs Assessment checklists
www.aarp.org/relationships/caregiving-resource-center/info-08-2010/gs_assessment_checklist.2.html

Family Caregiver Alliance: Hiring in-home help
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407

Family Caregiver Alliance: Handbook for long-distance caregivers
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1034

Books (all have excellent sections/chapters on hiring in-home care)

ElderCare 911: The Caregiver’s Complete Handbook for Making Decisions
www.preferredlifestyleservices.com/eldercare-911-book

The Caregiver’s Helpbook: Powerful Tools for Caregivers
www.powerfultoolsforcaregivers.org/book-store/

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, 3rd Ed
comfortofhome.com/bk/

Eileen Beal is a Cleveland, Ohio-based writer who has been writing about caregiver issues for more than a decade.  This article was written with the support of a MetLife Foundation Journalists in Aging Fellowship  grant administered through New America Media (www.newamericamedia.org) and the Gerontological Society of America (www.geron.org).

 

“At-home caregivers face challenges, sacrifice” (SJMN, 12-2-12)

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This post is about at-home caregivers.

Lisa Krieger, a journalist at the San Jose Mercury News (mercurynews.com), has been doing a wonderful series on the cost of dying.  Local Brain Support Network member Lana pointed out Lisa’s most recently installment in the series at the most recent caregiver support group meeting.  Lana noted that the most recent installment isn’t really about the cost of dying but addresses the physical, emotional, and financial toll on family caregivers in taking care of loved ones at home.  Others at the meeting who had also read the article said it was right on target.

The article mentions Barbara Gruenwald, another member of our local Brain Support Network group.  Barbara cares for her husband with Lewy Body Dementia.

There are two interesting graphics in the article, which are worth checking out online.  One graphic shows the relative cost of assisted living, nursing home, adult day services, home health aide, and homemaker services.  (I’m not really sure they meant to say “home health aide.”  I thought the industry called these “personal care aides.”)  This graphic shows what a great deal adult day services are.  I encourage you all to consider this.

The other graphic shows the ages of “informal caregivers.”  We see a very similar breakdown in our local support group — most people are in the 50-64 year old category, and the second most people are in the 35-49 year old category.  However, we don’t have many 18-34 year olds in our local support group.  We have lots of group members over 65 and some over 75.

If you go to the SJ Mercury News website, there’s a 9-minute video narrated by Lisa Krieger.  The video is not as compelling as the article.

Here’s a link to the article:

www.mercurynews.com/bay-area-news/ci_22102247/cost-dying-at-home-caregivers-face-challenges-sacrifice

Cost of Dying: At-home caregivers face challenges, sacrifice
By Lisa M. Krieger
San Jose Mercury News
Posted:   12/02/2012 05:16:55 PM PST

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