“8 Extraordinary Things You Need to Know About People With Chronic Illness”

The post is from late November 2016 on The Mighty (themighty.com), a website for those facing “disability, disease and mental illness together.”  It’s titled “8 Extraordinary Things You Need to Know About People With Chronic Illness.”  The eight things include:

1. People with chronic illness have a profound strength to manage life while in pain.

2. People with chronic illness tend to have an astute awareness of other people’s pain.

3. People with chronic illness may have a unique perspective on life.

4. People with chronic illness often don’t tell people when they are struggling.

5. People with chronic illness live a secret life of struggling.

6. People with chronic illness need you to check on them.

7. People with chronic illness can fail to follow through on commitments.

8. People with chronic illness need to know they are loved unconditionally, because you cannot place conditions on them.

The author encourages us to tell the people in our life with chronic illness how much we admire them.

Here’s a link to the post:

themighty.com/2016/11/being-sick-and-how-to-be-supportive/

8 Extraordinary Things You Need to Know About People With Chronic Illness
The Mighty
By Christine Carter
November 29, 2016

Robin

 

Caregiving Guidelines (six important points when providing care)

I haven’t visited this website, National Caregivers Library (caregiverslibrary.org), in awhile.  Someone on an UK-based online support group recommended it today.  It does have some good checklists.  In 2015, I mentioned their checklist called “Are You Grieving?”

Today, I came across their “Caregiving Guidelines,” which include six important points to keep in mind when providing care to a loved one:

1. Preserve dignity
2. Involve your loved one
3. Promote independence
4. Ask for help
5. Be an advocate
6. Take care of yourself

The short guidelines are copied below.

Robin

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www.caregiverslibrary.org/caregivers-resources/grp-caregiving-basics-topic/caregiving-guidelines-article.aspx

Caregiving Guidelines

Whatever the specifics of your situation, there are some important basic guidelines to remember when you provide care for a loved one:

1. Preserve dignity
2. Involve your loved one
3. Promote independence
4. Ask for help
5. Be an advocate
6. Take care of yourself

1. Preserve Dignity

Respect your loved one’s right to make decisions about his or her life, and help him or her maintain a sense of control and privacy whenever possible.

* Listen to what your loved one has to say, and pay attention to his or her worries and concerns.
* Provide help on your loved one’s terms, not yours. Tasks like dressing and bathing are personal and private.
* Encourage your loved one to retain as much control over his or her life as possible.
* Be understanding. Keep in mind that most people feel frustrated or unfairly burdened at some point.

2. Involve Your Loved One

The ability to make decisions is a basic freedom, so provide choices whenever possible—from where to live to which cereals to eat at breakfast to what to wear. Choices enable us to express ourselves. As your loved one’s options become more limited (through health losses, financial constraints, etc.), you may have to work harder to provide choices.

3. Promote Independence

Caregivers often take over when they shouldn’t. If your loved one is still capable of performing certain activities, such as paying bills or cooking meals, then encourage him or her to do so. Helping your loved one maintain a feeling of independence will make him or her feel better about being in a care-receiving situation.

* Encourage any effort at independence, no matter how small.
* Even if you can do something “quicker and easier” than your loved one, let him or her take care of it if possible.
* Avoid treating your loved one like a child.

4. Ask for Help

Many caregivers are so accustomed to providing help and seeing to another person’s needs that they don’t know how to ask for aid themselves. Take advantage of the help that’s available.

* Your family is your first resource. Spouses, brothers and sisters, children, and other relatives can do a lot to ease your caregiving burden. Let them know what they can and should do.
* Look to your church for aid and counsel. Make your minister or religious leader aware of your situation.
* Turn to caregiving support groups, or support groups for specific illnesses like Alzheimer’s or heart disease.
* Encourage your loved one’s friends and neighbors to provide what comfort they can.

5. Be an Advocate

Keep in mind you are a member of your loved one’s health care team, and that your role is as important, if not more important, that anyone else’s. In many cases, you may be the only one equipped to speak out on your loved one’s behalf or to ask difficult questions.

Chances are that none of the health professionals providing care for your loved one will know every aspect of his or her condition at the start. You may need to help with the exchange of information among physicians.

Prepare your loved one’s Personal Health History and take it with you as you accompany the care recipient to appointments. Make sure your loved one’s doctor is aware of what’s on it.

6. Take Care of Yourself

Providing care while holding down a job, running a household, or parenting can lead to exhaustion. If you do become exhausted or sick, you’re more likely to make bad decisions or take out your frustrations in an unfair way.

* Take advantage of opportunities for respite care.
* Refresh yourself for the “long haul.” Pay attention to what your body tells you.
* Be prepared for many potential lifestyle changes (work schedules, social life, money and resources) and evaluate your readiness.

©Copyright FamilyCare America, Inc. All Rights Reserved.

“How to help older adults eat more and gain weight”

Occasionally local support group members ask how the help their family member with a neurological disorder put on some weight.  My usual go-to answer is ice cream, the full-fat kind.

Recently I found a 2014 post on The Geriatrician blog (thegeriatrician.blogspot.com) on this topic.  Most interesting to me was that there are lots of “normal reasons” for losing weight, related to aging.  The advice from the geriatrician, Joshua Uy, MD, also includes eating more ice cream.  His list includes bacon, sausage, cheese, bread, candy, etc.

The short blog post is below.

Robin

——————————-

thegeriatrician.blogspot.com/2014/11/how-to-help-older-adult-eat-more-and.html

How to help older adults eat more and gain weight
The Geriatrician
Thursday, November 13, 2014

Older adults lose appetite and weight for a number of reasons.  And it drives families crazy and sometimes the patient themselves.  There’s a whole host of reasons and for every reason there’s a number of solutions and medications are always the option of last resort.

Without getting into it too much, there are “normal” and “abnormal” reasons to lose appetite.

Normal reasons have to do with the normal aging process:
Losing the sense of smell
Losing sensitivity of taste buds
Dentures (which cover taste buds)
Decrease digestion ability and speed which leads to early fullness

Abnormal reasons include
Medications (meds are always first for abnormal anything)
Dry mouth (and dentures that are not cleaned)
Dementia (leading to problems of coordination, attention, awareness)
Cancer
Congestive heart failure
and on and on.

What I wanted to do with this post is write about what I recommend as general recommendations for weight gain regardless of cause.  Ideally you remove the barrier/obstacle.  (i.e if there is a medication causing a side effect, then stop the medication).

Anyway, here are my tips….

To stimulate your appetite try changing the variety in your food.  Specifically change the
1.  Taste-Salty, sweet, bitter, sour, spicy
2.  Temperature-Hot or cold
3.  Texture-Crunchy, soft, chewy, liquid
4.  Smell (for taste issues)

Make sure your mouth is clean to improve taste
Make sure your mouth is moist
Eat with others

To increase calories
1.  No restriction on diet:  No limits on salt, sugar, fat, or carb restriction.  Eat anything you want:  Bacon, sausage, bread, ice cream, candy, cookies, cheese etc.
2.  Increase the calories in your food by adding:  Heavy cream, cheese, sugar
3.  Buy Carnation Instant Breakfast instead of Boost or Ensure because it is cheaper.  Drink them between meals, not with meals.

“When Looking For A Nursing Home, You May Get Little Help From Your Hospital” (KHN)

This rather frightening Kaiser Health News (khn.org) story from late December 2016 shows that just because a hospital discharge planner gives the family a list of skilled nursing facilities (also called nursing homes), rehab facilities, or home health agencies, the names on that list have likely not been vetted in any way by the hospital.

The woman discussed in the article had undergone hip surgery at California Pacific Medical Center (part of Sutter Health) in San Francisco in 2012.  The hospital encouraged the family to place the woman in skilled nursing facility affiliated with CPMC.  The woman died during a three-week stay at the facility.  The family sued and some parties have settled.

As noted in the article, families should look at Medicare’s Nursing Home Compare tool before making a decision.  The CPMC/Sutter facility where the woman died had a rating of one star out of five, meaning “much below average.”  The facility was closed in 2015.

Recently, a family contacted me with a long list of facilities given to them by the discharge planner.  A quick glance at Nursing Home Compare revealed lots of problems.

Another good resource in California is CANHR, California Advocates for Nursing Home Reform.  They also have ratings on their website.

You can find these rating tools for nursing homes online at:

Nursing Home Compare
medicare.gov/nursinghomecompare

CANHR
canhr.org/NH_Data

Since it seems that hospital discharge planners don’t inform families of these tools, you need to be aware of them and use them.

The article notes:

“The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.” 

And a representative of CANHR had this to say:

“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”

Unfortunately hospitals just want the patients out of the hospital.  It seems there is little concern for what’s next for the patient.

A Brown University professor said “that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.”

The article notes:

“Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.”

The full article is copied below.

Buyer beware!

Robin

———————————

khn.org/news/when-looking-for-a-nursing-home-your-hospital-may-offer-little-help/

When Looking For A Nursing Home, You May Get Little Help From Your Hospital
Kaiser Health News
By Jordan Rau
December 20, 2016

At age 88, Elizabeth Fee looked pregnant, her belly swollen after days of intestinal ailments and nausea. A nurse heard a scream from Fee’s room in a nursing home, and found her retching “like a faucet” before she passed out.

The facility where she died in 2012 was affiliated with a respected San Francisco hospital, California Pacific Medical Center, and shared its name. Fee had just undergone hip surgery at the hospital, and her family, pleased with her care, said they chose the nursing home with the hospital’s encouragement.

Laura Rees, Fee’s elder daughter, said she was never told that the nursing home had received Medicare’s worst rating for quality — one star. Nor, she said, was she told that state inspectors had repeatedly cited the facility for substandard care, including delayed responses to calls for aid, disrespectful behavior toward patients and displaying insufficient interest in patients’ pain.

“They handed me a piece of paper with a list of the different facilities on it, and theirs were at top of the page,” Rees said in an interview. “They kept pointing to their facility, and I was relying on their expertise and, of course, the reputation of the hospital.”

Fee had an obstructed bowel, and state investigators faulted the home for several lapses in her care related to her death, including giving her inappropriate medications. In court papers defending a lawsuit by Fee’s family, the medical center said the nursing home’s care was diligent. The center declined to discuss the case for this story.

The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.

Yet many case managers at hospitals do not share objective information or their own knowledge about nursing home quality. Some even push their own facilities over comparable or better alternatives.

“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”

Hospitals say their recalcitrance is due to fear about violating a government decree that hospitals may not “specify or otherwise limit” a patient’s choice of facilities. But that rule does not prohibit hospitals from sharing information about quality, and a handful of health systems, such as Partners HealthCare in Massachusetts, have created networks of preferred, higher-quality nursing homes while still giving patients all alternatives.

Such efforts to help patients are rare, said Vincent Mor, a professor of health services, policy and practice at the Brown University School of Public Health in Providence, R.I. He said that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.

“They’re giving them a laminated piece of paper” with the names of nearby nursing facilities, Mor said. For quality information, he said, “they will say, ‘Well, maybe you can go to a website,’” such as Nursing Home Compare, where Medicare publishes its quality assessments.

The federal government may change this hands-off approach by requiring hospitals to provide guidance and quality data to patients while still respecting a patient’s preferences. The rule would apply to information not only about nursing homes but also about home health agencies, rehabilitation hospitals and other facilities and services that patients may need after a hospital stay.

“It has a substantial opportunity to make a difference for patients,” said Nancy Foster, a vice president at the American Hospital Association.

But the rule does not spell out what information the hospitals must share, and it has yet to be finalized — more than a year after Medicare proposed it. The rule faces resistance in Congress: The chairman of the House Freedom Caucus, Rep. Mark Meadows, R-N.C., has included it on a list of regulations Republicans should block early next year.

The government has created other incentives for hospitals to make sure their patient placements are good. For instance, Medicare cuts payments to hospitals when too many discharged patients return within a month.

“Hospitals didn’t use to care that much,” said David Grabowski, a professor of health care policy at Harvard Medical School. “They just wanted to get patients out. Now there’s a whole set of payment systems that reward hospitals for good discharges.”

But sometimes hospitals go too far in pushing patients toward their own nursing homes. In 2013, for instance, regulators faulted a Wisconsin hospital for not disclosing its ties when it referred patients to its own nursing home, which Medicare rated below average. In 2014, a family member told inspectors that a Massachusetts hospital had “steered and railroaded” her into sending a relative to a nursing home owned by the same health system.

Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.

The Lowest Rating

Medicare’s Nursing Home Compare gave the nursing home where Elizabeth Fee died one star out of five, meaning it was rated “much below average.” The hospital’s case managers told Fee’s family that the nursing home was merely an extension of the hospital and that “my mother would receive the same excellent quality of care and attention,” said Rees, her daughter.

But state inspectors found shortcomings in seven visits to the nursing home between August 2009 and October 2011, records show. Inspectors found expired medications during two visits and, at another, observed a nurse washing only her fingertips after putting an IV in a patient with a communicable infection.

Just four months before Fee arrived, inspectors cited the nursing home for not treating patients with dignity and respect and for failing to provide the best care. One patient told inspectors that her pain was so excruciating that she couldn’t sleep but that nurses and the doctor did not check to see whether her pain medications were working.

“Nobody listens to me,” the patient said. “I was born Catholic, and I know it’s not right to ask to die, but I want to die just to get rid of the pain.”

Fee ate little and had few bowel movements, according to the state health investigation. Fee’s family had hired a private nurse, Angela Cullen, to sit with her. Cullen became increasingly worried about Fee’s distended belly, according to Cullen’s affidavit taken as part of the lawsuit. She said her concerns were brushed off, with one nurse declining to check Fee’s abdomen by saying, “I do not have a stethoscope.”

On the morning of her death, an X-ray indicated Fee might have a bowel obstruction or other problem expelling stool, the inspectors’ report said. That evening, after throwing up a large quantity of matter that smelled of feces, she lost consciousness. She died of too much fluid and inhaled fecal matter in her lungs, the report said.

Bills Of More Than $150,000

An undated photo of Elizabeth Fee as a fashion model. (Robert Durell for KHN)
An undated family photo of Elizabeth Fee as a fashion model. (Robert Durell for KHN)

In a court ruling, Judge Ernest Goldsmith of the San Francisco Superior Court wrote that Elizabeth Fee’s younger daughter, Nancy, “observed her mother drown in what appeared to be her own excrement.” Kathryn Meadows, the family’s attorney, said in a court filing that the nursing home’s bills exceeded $150,000 for the three-week stay.

Sutter Health, the nonprofit that owns the medical center and the nursing home, emphasized in court papers that Elizabeth Fee arrived at the facility with a low count of platelets that clot blood. Sutter’s expert witness argued that the near-daily visits from a physician that Fee received “far exceeds” what is expected in nursing home care.

The physician and his medical group have settled their part of the case and declined to comment or discuss the terms; the case against Sutter is pending. California’s public health department fined Sutter $2,000 for the violations, including for delaying 16 hours in telling the physician about Fee’s nausea, vomiting and swollen abdomen. Last year, Sutter closed the nursing home.

A week or so after Fee died, a letter addressed to her from California Pacific Medical Center arrived at her house. It read: “We would appreciate hearing about your level of satisfaction with the care you received on our Skilled Nursing Rehabilitation Unit, the unit from which you were just discharged.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. Coverage of aging and long-term care issues is supported by The SCAN Foundation.

“Delirium Makes its Own Mark on Cognitive Decline” (Alzforum)

A comprehensive study of delirium and neurodegeneration was published last month in the journal JAMA Psychiatry.  The researchers wanted to learn “whether delirium worsens neurodegenerative pathology that’s already in the brain, or causes decline through a separate process, or both.”  Note that researchers relied on donated brains of those who suffered from neurological disorders — some of whom also had suffered delirium.  (If you are interested in brain donation, Brain Support Network can help your family make those arrangements!)

An Alzforum (alzforum.org) article about this research makes several key points about how delirium can hasten neurodegeneration and how delirium should be prevented:

* “[Delirium] contributes to cognitive decline independently of Aβ, tau, Lewy bodies, or vascular disease. But combined with any of these pathologies, delirium can quadruple the rate of memory loss.”

* “Delirium hastens cognitive decline in patients who have Alzheimer’s disease and increases the risk for dementia in older people who become delirious after surgery.”

* The findings suggest “delirium and pathology interacted to accelerate decline even further.”

* The “findings are a call to take delirium more seriously.”

* A clinician not involved in the study “said this study had tremendous health implications. ‘This creates an amazing impetus for public health agents to focus on delirium prevention as a way to reduce the negative burden on brain health.’ Almost half of cases are preventable by simple, inexpensive methods, ensuring people get optimal sleep, pain medication, fluids, and exercise in the hospital, he said (Hshieh et al., 2015).”

Here’s a link to the Alzforum article:

www.alzforum.org/news/research-news/delirium-makes-its-own-mark-cognitive-decline

Delirium Makes its Own Mark on Cognitive Decline
Alzforum
03 Feb 2017

Robin