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

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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

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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.

“Medicare’s Coverage of Therapy Services Again Is In Center of Court Dispute” (KHN)

Incredibly, Medicare officials and consumer advocates are back in court again over the denial of therapy services (PT, OT, ST) to Medicare patients.

Here are some highlights from yesterday’s Kaiser Health News article:

* “Four years after Medicare officials agreed in a landmark court settlement that seniors cannot be denied coverage for physical therapy and other skilled care simply because their condition is not improving, patients are still being turned away. … The settlement affects care provided by a trained professional in a patient’s home, nursing home or the provider’s private office that is medically necessary to maintain the patient’s condition and prevent deterioration.”

* “Several organizations report that the government’s initial education campaign following the settlement has failed.”

* “‘We still regularly get calls from people who are told they are being denied coverage,’ said Peter Schmidt at the National Parkinson Foundation, based in Miami. Denials sometimes occur because physical therapy providers use a billing code that still requires the patient to show improvement. Although Parkinson’s is a degenerative brain disease, Schmidt said physical therapy and exercise can help slow its progress.

* “‘There was a long-standing kind of mythical policy that Medicare contractors put into place that said Medicare only pays for services if the patient could progress,’ said Roshunda Drummond-Dye, director of regulatory affairs for the American Physical Therapy Association. ‘It takes extensive effort to erase that.'”

Here’s a link to the full article:

khn.org/news/medicares-coverage-of-therapy-services-again-is-in-center-of-court-dispute/

Medicare’s Coverage Of Therapy Services Again Is In Center Of Court Dispute
Kaiser Health News
By Susan Jaffe
January 30, 2017

Robin

 

“How To Make A Home Much More Friendly To Seniors Using Wheelchairs Or Walkers” (KHN)

This Kaiser Health News (khn.org) article from last week is about how the housing industry has NOT  accommodated those who use wheelchairs, walkers, crutches, or canes.

Two basic features that enhance accessibility are mentioned:
* entrances without steps
* extra-wide hallways or doors

And the term “usability” is introduced.  These are features that allow someone to carry out activities of daily life “with a measure of ease and independence.”

The author, Judith Graham, asked experts about issues mobility-challenged adults encounter.  Experts listed these areas of key concern in the home:

* getting inside:  wheelchair ramps
* doors (width)
* clearance for wheelchairs
* kitchen:  for meal preparation if using a walker or wheelchair
* laundry
* bathroom

Some remedies are offered along with a list of resources.  Of the resources mentioned, this checklist looks particularly useful:

The National Association of Home Builders aging-in-place remodeling checklist and certified-aging-in-place specialist program

The full article is copied below.

Robin


khn.org/news/how-to-make-a-home-much-more-friendly-to-seniors-using-wheelchairs-or-walkers/

How To Make A Home Much More Friendly To Seniors Using Wheelchairs Or Walkers
By Judith Graham
Kaiser Health News
January 26, 2017

When Dan Bawden teaches contractors and builders about aging-in-place, he has them get into a wheelchair. See what it’s like to try to do things from this perspective, he tells them.

That’s when previously unappreciated obstacles snap into focus.

Bathroom doorways are too narrow to get through. Hallways don’t allow enough room to turn around. Light switches are too high and electrical outlets too low to reach easily. Cabinets beneath a kitchen sink prevent someone from rolling up close and doing the dishes.

It’s an “aha moment” for most of his students, who’ve never actually experienced these kinds of limitations or realized so keenly how home design can interfere with — or promote — an individual’s functioning.

About 2 million older adults in the U.S. use wheelchairs, according to the U.S. Census Bureau; another 7 million use canes, crutches or walkers.

That number is set to swell with the aging population: Twenty years from now, 17 million U.S. households will include at least one mobility-challenged older adult, according to a December report from Harvard University’s Joint Center for Housing Studies.

How well has the housing industry accommodated this population?

“Very poorly,” said Bawden, chair of the remodelers division at the National Association of Home Builders and president of Legal Eagle Contractors in Bellaire, Texas. “I give them a D.”

Researchers at the Harvard center found that fewer than 10 percent of seniors live in homes or apartments outfitted with basic features that enhance accessibility — notably, entrances without steps, extra-wide hallways or doors needed for people with wheelchairs or walkers.

Even less common are features that promote “usability” — carrying out the activities of daily life with a measure of ease and independence.

Laws that guarantee accessibility for people with disabilities go only so far. The Americans with Disability Act applies only to public buildings. And while the Fair Housing Act covers apartments and condominiums built after March 1991, its requirements aren’t comprehensive and enforcement is spotty.

We asked several experts to describe some common issues mobility-challenged seniors encounter at home, and how they can be addressed. The list below is what they suggested may need attention and has suggested alterations, but is not comprehensive.

Getting inside. A ramp will be needed for homes with steps leading up to the front or back door when someone uses a wheelchair, either permanently or temporarily. The estimated price for a five-to-six foot portable nonslip version: $500 to $600.

You’ll want to take out the weather strip at the bottom of the front door and replace it with an automatic door bottom. “You want the threshold to be as flat as the floor is,” Bawden said. Consider installing an electronic lock that prevents the need to lean in and insert a key.

Doors. Getting through doorways easily is a problem for people who use walkers or wheelchairs. They should be 34 to 36 inches wide to allow easy access, but almost never are.

Widening a doorway structurally is expensive, with an estimated cost of about $2,500. A reasonable alternative: swing-free hinges, which wrap around the door trim and add about 2 inches of clearance to a door.

Clearance. Ideally, people using wheelchairs need a five-foot-wide path in which to move and turn around, Bawden said. Often that requires getting rid of furniture in the living room, dining room and bedroom.

Another rule of thumb: People in wheelchairs have a reach of 24 to 48 inches. That means they won’t be able to reach items in cabinets above kitchen counters or bathroom sinks.

Also, light switches on walls will need to be placed no more than 48 inches from the floor and electrical outlets raised to 18 inches from their usual 14 inch height.

Older eyes need more light and distinct contrasts to see well. A single light fixture hanging from the center of the dining room or kitchen probably won’t offer enough illumination.

You’ll want to distribute lighting throughout each room and consider repainting walls so their colors contrast sharply with your floor materials.

“If someone can afford it, I put in recessed LED lights in all four corners of the bedroom and the living room and install closet rods with LED lights on them,” Bawden said. LED lights don’t need to be changed as often as regular bulbs.

Kitchen. Mark Lichter, director of the architecture program for Paralyzed Veterans of America, recommends that seniors who use walkers or wheelchairs take time in the kitchen of a unit they’re thinking of moving into and imagine preparing a meal.

Typically, cabinets need to be taken out from under the sink, to allow someone with a wheelchair to get up close, Lichter said. The same is true for the stovetop: The area underneath needs to be opened and control panels need to be in front.

Refrigerators with side-by-side doors are preferable to those with freezer areas on the bottom or on top. Slide out full-extension drawers maximize storage space, as can lazy Susans in the corner of bottom cabinets.

Laundry. Get a side-by-side front-loading washer and drier to allow for easy access, instead of machines that are stacked on top of each other.

Bathroom. When Jon Pynoos’ frail father-in-law, Harry, who was in his 80s, came to live in a small cottage in back of his house, Pynoos put in a curbless shower with grab bars and a shower seat and a handheld shower head that slid up and down on a pole.

Even a relatively small lip at the edge of the shower can be a fall risk for someone whose balance or movement is compromised.

Also, Pynoos, a professor of gerontology, public policy and urban planning at the University of Southern California, installed nonslip floor tile and grab bars around a “comfort height” toilet.

Cabinets under the sink will need to be removed, and storage space for toiletries moved lower. A moveable toilet paper holder will be better than a wall-based unit for someone with arthritis who has trouble extending an arm sideways.

“It really wouldn’t take much effort or expense to design homes and apartments appropriately in the first place, to make aging-in-place possible,” Pynoos said. Although “this still doesn’t happen very often,” he noted that awareness of what’s required is growing and well-designed, affordable products are becoming more widely available.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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Resources for Readers

Learn more about home modifications for older adults with mobility challenges from these organizations:

— The National Resource Center on Supportive Housing and Home Modification at the University of Southern California
www.homemods.org/

— United Spinal Association Spinal Cord Resource Center
www.spinalcord.org/resource-center/askus/index.php

— AARP HomeFit Guide
www.aarp.org/livable-communities/info-2014/aarp-home-fit-guide-aging-in-place.html

— The National Association of Home Builders aging-in-place remodeling checklist and certified-aging-in-place specialist program
www.nahb.org/en/learn/designations/certified-aging-in-place-specialist/related-resources/aging-in-place-remodeling-checklist.aspx

— The Paralyzed Veterans of America architecture program: [email protected], (202) 416-7645