Monthly Archives: November 2016

Report on family caregiving in the US

Date
Posted by
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)

Date
Posted by

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

Big changes needed so we can spend our final months at home

Date
Posted by
Big changes needed so we can spend our final months at home

Though this article is focused on big changes that are needed to “make care at home possible during the last six months of life,” I thought it offered some good questions to consider, such as the tradeoffs between safety and independence.

According to this Kaiser Health News (khn.org) article, experts say these big changes are needed:

1- Reallocating resources to the home setting such as with house-call programs.

2- Clarifying priorities and discussing tradeoffs such as safety vs. independence.  “If staying at home at the end of life is a priority, this has to be communicated – clearly and frequently — to your family, caregivers, and physicians, said Dr. Thomas Lee, co-author of the New England Journal of Medicine study and chief medical officer at Press Ganey, a firm that tracks patients’ experiences with care.”

3- Taking advantage of services designed for people who need help at home, such as palliative care.  Check out the website getpalliativecare.org to find programs in your area.

4- Getting needed help.

5- Building community.  Consider enrolling in a “village” program.

Here’s a link to the full article:

khn.org/news/how-to-spend-your-final-months-at-home-sweet-home/

How To Spend Your Final Months At Home, Sweet Home
By Judith Graham
Kaiser Health News
November 10, 2016   

Robin

“Many Caregivers Spend $7K Annually Out of Pocket” (more for dementia caregiving)

Date
Posted by
“Many Caregivers Spend $7K Annually Out of Pocket” (more for dementia caregiving)

AARP conducted a study in July and August 2016 of nearly 2000 family caregivers.  Family caregivers whose loved ones had dementia had nearly $11,000 in out of pocket caregiving expenses (on an annual basis).  Family caregivers whose loved ones don’t have dementia had half as much out of pocket expenses.

Here are a few excerpts from the Kaiser Health News (khn.org) article on the AARP study:

* “Among the expenses caregivers cover are relocation costs for a caregiver or recipient; renovating homes with safety features such as wheelchair ramps and bathroom grab bars; assuming a loved one’s mortgages and other household payments; buying specialized equipment including wheelchairs, scooters and beds; covering insurance premiums; and paying for home care aides or respite services.”

* “Costs vary depending on the recipient’s age, independence and relationship to the caregiver, according to AARP. For example, attending to someone older than 50 costs more than assisting someone between 18 and 49, and caring for spouses leads to more out-of-pocket expenses than caring for friends or relatives. Household expenses account for the largest share of personal costs — 41 percent.”

* “The demands lead to life adjustments for caregivers: 45 percent reported they stopped taking vacations and 45 percent said they ate out less often to compensate for their extra costs.”

* “Many sacrificed personal essentials as well: 19 percent scaled back on their own doctor visits, 18 percent bought fewer groceries and 5 percent spent less on their children’s education.”

* “Caregivers surveyed reported that the time and energy they devoted to the task also affected their work lives. Nearly 1 in 3 reported changing hours, almost 30 percent took paid time off and 22 percent took unpaid time off.”

Here’s a link to the full article:

khn.org/news/study-many-caregivers-spend-7k-annually-out-of-pocket/

Study: Many Caregivers Spend $7K Annually Out Of Pocket
By Rachel Bluth
Kaiser Health News
November 14, 2016

Robin