Category Archives: Caregiving – General

Developing a “care map” (notes from caregiver conference session)

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Developing a “care map” (notes from caregiver conference session)

This post may be of interest to caregivers who might like to develop a “care map.”

Avenidas, the senior center in downtown Palo Alto, recently organized a caregiver conference.  One of the breakout session speakers was Rajiv Mehta, director of Atlas of Caregiving, on the topic of “Technology’s Impact on Caregiving.”  Though one objective of the session was to learn how technology help keep everyone in the care network in sync, that didn’t seem to be the actual content of the session.

The session focused on developing a care map, described as a “care ecosystem — who you care for, who else cares for them, and who cares for you.”  The process of drawing a care map is described in this 6-minute video:

Brain Support Network uber-volunteer Denise Dagan attended the breakout session and shared her notes, which include instructions for drawing a care map.  See below.

Robin

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From Denise:

By the title of this information session you would think it was going to introduce attendees to various high-tech gadgets and apps that facilitate caregiving, but no.  The speaker, Rajiv Mehta, Director of Atlas of Caregiving, introduced us to a decidedly low-tech gadget made with a pencil and paper, the Care Map.

First, he asked us to think of caregiving like an iceberg.  There’s a few people you can see doing the daily caregiving, but there are many more people who play important roles whom you don’t see much of, but who are crucial to the well being of the person needing care.  At least, that is the way it should be, if you have all available resources in place.

Rajiv believes visualizing the demands on a primary caregiver using the Care Map is crucial because the burden of care will only increase as baby boomers age, and Medicare continues its mandate to reduce spending waste.  Even when caregivers do have help, logistics can be challenging.  A Care Map can help plan logistics, too.

A brief survey of attendees show most people communicate and coordinate with friends and family using 3-ring binders, phone, email, texting and WhatsApp, facebook, Skype, FaceTime, and Google Hangouts, CaringBridge and Lotsa Helping Hands community care calendar websites.  Even with all these tools, resources can be underutilized or missed, altogether.

The idea of the Care Map is to get an overview of everyone involved in an individual’s caregiving community, offering a 30,000-foot-view.  By looking at the big picture, one can see:

– Who is indispensable?  What would happen if they suddenly became ill or injured?

– Are those involved aware of one another’s involvement?  Might things run more smoothly if they were organized? The household wouldn’t have too many casseroles, and someone would be fetching the dry cleaning, perhaps.

– Can responsibilities be divided according to expertise and distance from the person needing care.  Does a family member live across the country, and specialize in taxes, for instance.

– What is each person’s impact? Some people who believe they are helpful, are actually stressful to the primary caregiver and/or the person needing care.  Can that be remedied?

A Care Map can also change perspective because of what you don’t see:

– Have you forgotten to include anyone important to the person needing care?

– Are you taking anyone for granted, making them feel overburdened?

– Are there family members or friends who could be involved, but may not know help is needed.

– Are there professional services that could be helpful?  A geriatric care manager, grocery delivery, etc..

– What changes have occurred since last time a care map was drawn?  They should be updated periodically to illuminate resources that have ben dropped, but should be restarted, for example.

Drawing a care map is useful to the people immediately involved in a caregiving situation, but it can also be a powerful method of communicating the whole situation to professionals in identifying resources that are being underutilized.  Share it with your physician or nurse practitioner, a geriatric care manager, or social worker to make sure you have all the support in place that you, and the person you’re caring for, need.

Rajiv showed a sample care map.  Draw your own Care Map.  Simple instructions are below:

1. Draw a symbol for the person needing care and everyone living in the household with him or her (including pets).

Place a circle (or, better yet, a house) around them, and label everyone inside.

2. Do the same for the primary caregiver(s), if they live separately (as in the sample diagram).  If they live with the person needing care, leave enough space between everybody for labels and arrows.

3. Add thick arrows between the primary caregiver(s) and the person needing care.  Note, arrows point in the direction of care and some people care equally for each other, as in the sample diagram.  Thick arrows indicate involvement in another’s care more than once, daily.

4. Begin adding other people involved in the life of the person needing care.  Be sure to include day programs, doctors, support groups, religious organizations, and in-home health aids, along with friends, and family.  Remember to leave space for labels, arrows and anyone you forget in the first draft.

Note: Locate people on the paper according to driving distances; nearby being 20 minutes away with the next, middle distance, being 2 hours travel time, and far away being more than 2 hours.  Add circles to indicate those distance guides, when you have everyone listed.

5. Add thin arrows for those involved daily with the person needing care, dashed arrows for those involved weekly, and dotted arrows for those involved occasionally.  Be sure to include any thick arrows for primary caregivers in other households, so you don’t overburden them with help requests for your person needing care.

6. If you find someone with a dotted arrow, or no arrow, consider their skills and availability, then present them with a specific help request.  Starting with small favor or errand is more likely to garner their continuing assistance.

7. Use your Care Map to make sure all your caree’s needs are met by coordinating skills and availability among their friends, family, spiritual and medical community, as well as commercial services.  Share your Care Map with  people who may be able to spot gaps between needs and resources.

Here is a link to a 6-minute demonstration video:

Good luck!

– Denise

“Slow Medicine Movement” (notes from keynote)

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At the late October 2016 Avenidas Caregiver Conference, the keynote speaker was Lisa Krieger, reporter with the San Jose Mercury News.  Her topic was the “Slow Medicine Movement.”  The description was:  “legislative and policy efforts to improve caregiving, palliative medicine, and our final years.”

Ms. Krieger authored a thought-provoking series in late 2012 on the “cost of dying” at the end of life in the SJMN.  You can find a link to a BSN blog post about the series and Ms. Krieger’s eight “cures” to reduce suffering and the cost of dying here:

www.brainsupportnetwork.org/eight-cures-to-reduce-suffering-and-cost-of-dying-sjmn-12-29-12/

Brain Support Network volunteer Denise Dagan attended the Avenidas Caregiver Conference in late October 2016.  Denise shared these notes from Ms. Krieger’s keynote address.

Robin

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Notes from Denise:

Sadly, Ms. Krieger went through the care of her father without the information and assistance available at the kind of conference at which she was speaking.  She recounted how she had no awareness of palliative or hospice care, advance directives or POLST forms.  Nor did she realize the exorbitant cost of the treatment options the hospital was offering her dad.  Treatments she knew were not the right choice for a man with dementia, but which doctors looked disappointed with her for rejecting.  Only after she had sent them all away did someone suggest hospice, in the last few days of his life.  But, it was the $323,000 bill for a 10-day hospital stay that really sent her over the edge.  As a journalist, she felt she had to write about it.

In her initial research she was impressed with Dennis McCullough’s concept of slow medicine in his book, “My Mother, Your Mother: Embracing ‘Slow Medicine,’ the Compassionate Approach to Caring for Your Aging Loved Ones.”  He found that seniors with access to intense medical intervention did no better than those without such resources because medical technology has, “blurred the line between saving a life and prolonging a death.”

“Slow Medicine,” he says, “is shaped by common sense and kindness, it advocates for careful anticipatory “attending” to an elder’s changing needs rather than waiting for crises that force acute medical interventions—thereby improving the quality of elders’ extended late lives without bankrupting their families financially or emotionally.”  Essentially, he’s talking about palliative care and hospice services, advance directives and POLST forms — the very things Ms. Krieger didn’t know about during her caregiving journey.  But, she’s telling us about them, now.

The second half of Ms. Krieger’s talk was about recent updates and expansions to family caregiving support both in California and nationally.  Although she did not specify, she mentioned seeing recommendations to Congress from the National Academy of Sciences on the subject.  Here are a few things she did specify.

Medicare finally reimburses doctors for a single care planning meeting with seriously ill patients and their families so doctors don’t lose out financially for taking the time to provide information about treatment options, possible outcomes, and answer questions.  If there’s one thing Ms. Krieger wished she’d had, it was medical data on outcomes of the treatment options being offered her father.  Today, that data is available but, excepting for this one billing-approved meeting, doctors are paid for each procedure or test, not talk or explanations.  There is a bill being debated in congress to further expand Medicare’s coverage of the care planning process, but it needs support to get passed.

Recent changes to the California Care Act include provisions that require hospitals to identify a caregiver upon admission to whom the hospital may disclose medical information about the patient, and train in post-hospital care during the discharge process.

California recently increased its paid leave to 60% percent of a person’s salary (capped at $1,100 per week) starting in 2018, and created a new classification for low-income workers, who make about $20,000 or less, to receive 70% of their regular pay, so more people could afford take advantage of the benefit.

The California Task Force on Family Caregiving was recently established “to examine issues relative to the challenges faced by family caregivers and opportunities to improve caregiver support, review the current network and the services and supports available to caregivers, and make policy recommendations to the Legislature.”

The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719/H.R. 3099) would require the Secretary of Health and Human Services to develop, maintain and update an integrated national strategy to recognize and support family caregivers.  This also needs support to get passed.

There is a movement afoot that started in 1994 proposing to change Social Security benefits to reflect child-care years out of the paid work force, that is now being expanded to include Social Security quarters credit for those who leave work to care for a family member in the case of long term illness.  Unfortunately, this is still in conceptual stages.

Finally, there is a push to educate young people about the need for compassionate caregiving and to elevate the status and pay for caregivers so that young people are more likely to consider it as a career path.  After all, the young people today will be our caregivers tomorrow.

– Denise

 

Report on family caregiving in the US

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Report on family caregiving in the US

The title of this article in Huffington Post is “Everything That’s Wrong With Caregiving In America Today.”  The author describes a recent report of family caregiving in the US by the National Academies of Science, Engineering, and Medicine.  The article highlights seven ways in which “public policy lags woefully behind today’s reality” for caregiving.  Here are a few excerpts:

* “You can’t care for the patient without caring about the caregiver. And nobody cares about caregivers.”

* “Caregivers have told us how they lose themselves and life becomes entirely centered on the patient. … Instead of delivering ‘patient-centered’ care, health-care providers should adopt ‘family-centered’ models that include making sure that caregivers don’t lose their identities ― or minds.”

* “Caregiving can actually kill you. … Family caregivers were found to have lower physical well-being, higher stress levels, higher rates of chronic disease, and greater risk for depression, social isolation and financial losses than their non-caregiving counterparts.”

* “Caregivers are daughters, sons, and spouses. They are not skilled nurses. … Caregivers do what nurses used to. They deal with feeding and drainage tubes, catheters, dialysis ports and other complicated medical devices; they perform wound care, deliver injections, test and record glucose and blood pressure; they perform personal hygiene tasks for their patients and prepare dietician-directed meals. They do a whole bunch of other things that they never in a million years would have thought they would be asked to do and many of those tasks are extremely unpleasant.”

* “Until you’ve become a caregiver, you just have no idea what it entails these days.”

* “Caregivers are often unwilling participants and most always voiceless ones.”

* “The Health Insurance Portability and Accountability Act (HIPAA) law protects a patient’s privacy and can mean the doctor doesn’t have to talk to family caregivers.”

Here’s a link to the article:

www.huffingtonpost.com/entry/this-is-everything-thats-wrong-with-caregiving-in-america-today_us_57e2e78ce4b0e80b1b9fff6e

This Is Everything That’s Wrong With Caregiving In America Today
Public policy lags woefully behind today’s reality.
By Ann Brenoff  
The Huffington Post    
September 22, 2016

Robin

 

Key questions to ask or key info to share about future care (caring.com article)

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This post may be of interest to those who haven’t yet talked with their family members about end-of-life care.

Dayna Steele, who writes on caring.com, has a list of five things to do after a neurological diagnosis.  One item on her list is:  talk with your loved one about his or her future care preferences.

In fact, as Ms. Steele points out, we should all write down our future care preferences, whether we have a neurological diagnosis or not.  She suggests wrapping up the answers to give as a holiday gift to our family and close friends.  Among the list of future care questions are these that I don’t see very often in such lists:

* How should we approach taking your driving privileges away and making other transportation arrangements when we know it’s time?

* If your home needs to be sold, do you have any specific instructions?

* If you can no longer take care of your pet(s), what is the vet contact information and where would you like your pet(s) to go?

Here’s a link to Ms. Steele’s list of future care questions:

www.caring.com/articles/questions-end-of-life-care

Having “The Talk”: Key Questions About End-of-Life Care
By Dayna Steele, Chief Caring Expert
Caring.com
Last updated: Nov 09, 2016

And here’s a link to Ms. Steele’s list of five things to do after a neurological diagnosis:

www.huffingtonpost.com/dayna-steele/things-to-do-after-alzheimers-diagnosis_b_12685680.html?

The First 5 Things To Do After An Alzheimer’s Diagnosis
The Huffington Post
By Dayna Steele
November 5, 2016

Robin