“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:


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



Care partner communication at all stages of dementia – workshop notes

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association (alz.org/norcal) “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Here are his notes from the break-out session on “Care partner communication at all stages of dementia.”



Steven’s Notes

Care Partner Communication at all Stages of Dementia
Session by:  Alexandra Morris, Alzheimer’s Association
Alzheimer’s Association Circle of Care
December 2016


In early stages, where the diagnosis may be mild cognitive impairment, the person may be able to adequately express his/her thoughts, participate in and make decisions about future care but may also misinterpret what others say. People at this stage will have difficulty finding words, participating in/following conversations and struggle with decision-making or problem solving.  The care partner can connect with care recipient at this stage by using clear and straightforward sentences, leaving extra time for conversations (particularly responses), etc. Care partners should be especially careful to include the person in any conversation…related to future care decisions. Communicate in a manner that works best for the person (email, in-person, phone) and speak directly to him/her.


In mid-stage disease, language is reduced to basic words and sentences. The person receiving care is more likely to rely on tone of voice, facial expressions and body language to make a connection. At this stage, activities meaningful to the person with dementia are key to maintaining an emotional connection. Clues about cognitive changes include losing words (nouns go first), increasing trouble finding the right word and losing the train of thought or the thread of a conversation. Communication comes more through behaviors than words. Care partners can help by approaching from the front, saying who they are while calling the person receiving care by name. Care partners should move their level to match that of the care recipient, pay attention to tone of voice and take more time to let the conversation flow. Short sentences and basic words are best (one question at a time) and distractions should be limited. It is especially important to normalize experiences (for instance, if the care recipient is afraid, explain what is happening and show that you are not afraid).

Also at this stage, caregivers should join the care recipient’s reality. Keep respect and empathy in mind as you try to give the person multiple cues to help make and maintain a connection. Modeling behavior, keeping gestures fluid and overt (never sudden or coming from the side) repeating as necessary, avoiding “quizzing” about a topic and turning negatives into positives are great tools to help build trust. Writing things down, pointing them out or using photographs or pictures to convey meaning are also very helpful. One cue Ms. Morris mentioned is putting answers into your questions — “Would you like to wear the red shirt today?”  As verbal communication begins to decline, try and asses the care recipient’s needs (pain, bathroom, hunger, temperature, fear, boredom). People with dementia only receive half the pain medication needed compared to functional adults. In addition people with dementia are almost never treated for breakthrough pain (the person with dementia struggles to express this need so the care partner will need to always be alert to checking pain levels and advocating for patient comfort. Let the person with dementia know you hear his/her concern whether through words, behavior or both.


In late-stage disease, the care recipient uses body language and his or her five senses to make a connection. The person may still respond to familiar words, phrases, smells or songs. Pain is often chronic at this stage . If the care recipient is agitated, always check first for pain, then bathroom, food, temperature, etc. The care partner should reply in a similar manner using all five senses to make a connection:

Touch – feel different fabrics, identify shapes by touch, give lotion hand massages, identify items in a bag by touch, visit animals, sculpt, hold the person’s hand;

Sight – brightly colored pictures to look at together, photo albums, paint with watercolors, go bird watching, sit at an open window;

Sound – particularly music (and personally meaningful music-the movie Alive Inside shows this very movingly), traditional or native language music, poems, whistling, singing and humming are all helpful;

Smell – baking (cookies are always great), aromatherapy with essential oils, flowers, grass clippings, fragrant lotions for hand massages;

Taste – favorite foods, popsicles, flavored drinks, ice cream.

At all stages of disease the care partner needs to understand and accept what can’t be changed. The person receiving care retains a sense of self, despite the many losses caused by dementia. You are visiting their world — join them there to make a connection. Always treat the person as an adult, worthy of respect and empathy. Try and decode what need the person is trying to express and help meet that need with soothing and calming words and actions. Recognize the effects of our moods and actions on the person receiving our care.

“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.



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.


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

— United Spinal Association Spinal Cord Resource Center

— AARP HomeFit Guide

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

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

“Aid-in-Dying Laws Don’t Guarantee That Patients Can Choose To Die” (KHN)

This Kaiser Health News (khn.org) article is about local healthcare providers around California refusing to participate in the state’s End of Life Options Act, which went into effect in early June 2016.

The article states who is eligible to use the End of Life Options Act:

“Patients eligible for aid-in-dying laws include terminally-ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify they meet the qualifications.”

I am aware of a couple of Californians who used lethal medications to end their lives before the act (working with hospice agencies), and perhaps six Californians who have used the End of Life Options Act to end their lives.  Some families have had to search hard for physicians and hospice agencies willing to assist.  One family had to relocate in order to succeed in obtaining a prescription for lethal medication.

In our local support group, the two requirements that have often made people ineligible for the prescription are:

* must be capable of self-administering the medication.  Not all those with PSP, CBD, MSA, or LBD are physically capable of this.

* must be mentally capable of making their own healthcare decisions.  Not all those with PSP, CBD, MSA, or LBD are capable of this.  LBD is, by definition, a type of dementia.  PSP and CBD both have forms of the disease that include dementia. And those with PSP, CBD, or MSA may be unable to communicate verbally or in writing to demonstrate that they are mentally capable.

If a family contacts me about this, I generally refer them to Compassion & Choices, compassionandchoices.org.

According to this article, Compassion & Choices has a search tool where you can enter in your zip code and find a provider willing to “honor end-of-life wishes.”  See:


The full article is below.



Aid-in-Dying Laws Don’t Guarantee That Patients Can Choose To Die
Kaiser Health News
By JoNel Aleccia
January 26, 2017

In the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs —  but only, he says, because too few others would.

Shavelson, director of a Berkeley, Calif. consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers refused to participate in the state’s End of Life Options Act.

“Those are the ones who could find me,” said Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”

Across California — and in the five other states where medical aid-in-dying is now allowed — access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.

Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.

In Colorado, where the nation’s latest aid-in-dying law took effect last month, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.

Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers willing or able to dispense the lethal drugs for 100 miles, said officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.

“That’s why we still have active access campaigns in Oregon, even after 20 years,” said Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”

In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.

“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”

The stance was also devastating for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.

“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”

Kevin Fitzgerald, Schiller’s son-in-law, described the obstacles she faced in a local news story.

Schiller’s hospice turned down her request, and she couldn’t find a local referral, forcing Linda Fitzgerald to scramble to fulfill her mother’s last wish.

“I thought it was going to be very simple and they would help us,” said Linda Fitzgerald. “Everything came up empty down here.”

Opponents of aid-in-dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.

“People consider it a breaking of professional integrity,” said Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.

But the decisions can effectively isolate entire regions from access to laws overwhelmingly approved by voters, advocates said.

In California’s Coachella Valley, an area that includes Palm Springs, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid-in-dying, officials said.

“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.

Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.

“All we have done is say it can’t be done in our facility,” he added.

In practice, however, the decision has had a chilling effect, said Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.

“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”

Patients eligible for aid-in-dying laws include terminally-ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify they meet the qualifications.

Many individual doctors in California remain reluctant to participate because of misunderstandings about what the law requires, said Dr. Jay W. Lee, past president of the California Academy of Family Physicians.

“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee said, adding that doctors have a moral obligation to address end-of-life concerns.

There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.

“They don’t want to be known as the ‘death docs,’” said Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.

Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.

At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.

Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.

Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs and on Aug. 17, ate a half-cup of applesauce mixed with Seconal, a powerful sedative.

“Within 20 seconds, she fell asleep,” Fitzgerald recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

“Nursing Home Residents Gain New Protections” (NYT)

This post will be of interest to those who have family members in nursing homes.

This recent New York Times article reviews the state of nursing homes and regulations affecting nursing homes.  Surprisingly, the Centers for Medicare and Medicaid Services do not require minimum staffing at nursing homes.

Here’s a link to the full article:


Nursing Home Residents Gain New Protections
New York Times
Paula Span
Jan. 27, 2017


“I’ve had it up to here! Coping with stress while caregiving” – Webinar Notes

This Thursday, I listened to Janet Edmunson’s webinar titled “I’ve had it up to here! Coping with stress while caregiving.”  The recording is available, and it’s well worth 45 minutes of time.

I’ve jotted notes below while listening to the webinar.  Janet’s main suggestion is to use the 4As to cope with your stress.

There were fewer than 60 participants nationally in the webinar so there weren’t many questions.  I’ve included the small Q&A below.

You have to register for the webinar first and then you can link to the recording.  See:




Robin’s Notes from

“I’ve had it up to here! Coping with stress while caregiving”
Webinar by
Janet Edmunson, M.Ed., Affirm Yourself, affirmyourself.com
January 26, 2017

Quotation by Erma Bombeck:  “If life is a bowl of cherries, what am I doing in the pits?”

What is stress?  Response of the body to any demand or stressor made upon it.  We have a lot with caregiving.

The body’s response to stress if “fight or flight.”  Body systems rev up – heart rate goes up, blood pressure goes up, muscles tighten to prepare for action.  Fight = angry, argumentative.  Flight = withdraw socially, watching TV excessively, drinking too much alcohol.

Stress response happens in amygdala.  Theory that stress response triggers inflammation, which triggers heart disease, etc.

When stress becomes chronic (one crisis after another), it can cause long-term health problems.

Stress is different for us all.  Stress starts for our unique perceptions.  Stress begins with us.

To combat the response, we must be aware of our perceptions and try to have a more realistic view of them.

First activity:  write down what specific things are stressing you lately.

Symptoms of caregiver stress (according to Alzheimer’s Association – but these apply to caregivers of those with any condition):  denial; anger; social withdrawal; anxiety; depression; exhaustion; sleeplessness; irritability; lack of concentration; health problems (muscle tension; headache; stomach problems; heart attack; stroke).

“Stress makes us stupid.”  Our brain loses focus when concentrating on the stress.

These symptoms are red flags that are alerting you that you need to do something about this stress level.  It can’t wait.

Add:  behavioral issues; how you think and feel as well as physical issues.

4-A model for coping with stress:

Phil Sweet’s article was helpful in developing this webinar.  (She found it by googling “4 As.”)


Avoid unnecessary stress.  Some stressors we should not avoid.

– Learn to say “no.”  Caregiving or household tasks can be delegated to others.  If you get overwhelmed, you may feel resentful.

– Avoid people who stress you out.

– Control your environment.  Example – turn off the evening news if it makes you anxious.  Example – avoid traffic if it stresses you out.  Example – if you don’t like grocery shopping, try grocery delivery or ask friends to help you with grocery shopping.

– Stop time wasters.


Alter the situation if you can’t avoid the stressor.  Change the way you communicate and operate in your daily life.

– Be more assertive.  Don’t be a passenger.  Anticipate and prevent problems.  Set “care limits” by being assertive.  Example – insist on professional caregivers even when husband pushed back.  Example – insist on respite time even when care recipient disagrees.

– Express your feelings.  May be impossible if dealing with someone with dementia or executive function.  Use “I” statements.  Example – “I feel frustrated with XYZ.  Is there something we can do?”

– Be flexible and willing to compromise.  Especially true if you always want to be in control.

– Manage your time better.  Poor time management adds to your stress.  Constantly prioritize your tasks and even your relationships.  Drop the unimportant tasks and relationships off your to-do list.  Task:  write down 3 things you want to do more of, and write down 3 things you could do less of.  This gives you an idea of what’s most important and what can be dropped off the list.


Important study on happiness:  only 10% of happiness is due to external circumstances (money, etc).  50% is how we see the world based on our heredity (optimistic, pessimistic).  Still leaves 40% – we can control with our own attitudes and choices.  We can choose our responses!

Adapt means changing yourself.

– Reframe problems.  Try to view stressful situations from more positive perspective.  Example – be thankful for the patience you are learning.  Example – to cope with Charles’s yelling, think about why Charles was yelling rather than responding emotionally to the yelling.

– Look at the big picture.  Can you say “oh well”?

– Adjust unrealistic perfectionism.  Example – to-go food rather than home-cooked meals.

– Focus on the positives.  Think about what you appreciate in life.  At the end of each day, ask yourself “what went well?”  Savor these positives.

Question:  Was it a bad day?  Or was it a bad five minutes that you milked all day?


– Don’t try to control the uncontrollable.  We couldn’t change the fact that Charles had a neurological condition but we could change our attitude about that and give Charles the best life possible.  Look for meaning or gifts that struggles bring.  If you look, you will find something!

– Accept mistakes.  Usually not the end of the world.  Or ask for forgiveness.

– Learn to forgive.  Maya Angelou changed the word to “give for”; she gave something good to someone else.

– Share your feelings.  Join a support group, talk to a friend, or meet with a professional therapist.

5th A sometimes used – ADOPT

– Make time for fun and relaxation.

– Exercise.  Can affect stress hormones.  Can act as an anti-depressant.

– Eat well.  Keeps you strong.

– Get enough sleep.  Make this a priority.  If you can’t get to sleep, try deep breathing, counting, song lyrics (with visualization), read, jot down worries, etc.


What of these suggestions will you adopt?

Quotation by Terri Guillemets:  “Stress if the trash of modern life – we all generate it, but if you don’t dispose of it properly, it will pile up and overtake your life.”


Q:  I am dealing with a bad attitude 24×7.

A:  Could ask “what’s going well?” to try to get a care recipient to appreciate positives.

Get professional help.  If not, at least find a friend who is willing to let you dump on them.

Avoid the home.  Bring someone in to sit with spouse, if needed.

Q:  Spouse is combative and resists caregivers.

A:  Don’t take it personally.  Your well-being is as important as spouse’s.

Are there ways to get help that wouldn’t be direct caregiving?  Examples – housework, grocery shopping, yard work.

Sometimes care recipients soften up when it comes to having caregivers in the home.

Need to find support for self.

Tuesday, September 19, 4pm CA time – “Feel empowered while caregiving”

Instructions for moving a patient from bed to wheelchair

Here are instructions in the US government’s medical encyclopedia for moving someone from a bed to a wheelchair.  The instructions assume the person can stand on at least one leg.

Online friend Vera James recently posted this link to an online MSA support group.



Moving a patient from bed to a wheelchair

Follow these steps to move a patient from bed to a wheelchair. The technique below assumes the patient can stand on at least one leg.

If the patient cannot use at least one leg, you will need to use a lift to transfer the patient.

Think through the steps before you act, and get help if you need it. If you are not able to support the patient by yourself, you could injure yourself and the patient.

Make sure any loose rugs are out of the way to prevent slipping. You may want to put non-skid socks or shoes on the patient’s feet if the patient needs to step onto a slippery surface.

The following steps should be followed:

1.  Explain the steps to the patient.

2.  Park the wheelchair next to the bed, close to you.

3.  Put the brakes on and move the footrests out of the way.

Getting a Patient Ready to Transfer
Before transferring into the wheelchair, the patient must be sitting.

Allow the patient to sit for a few moments, in case the patient feels dizzy when first sitting up.

The following steps should be followed when getting ready to transfer a patient:

1.  To get the patient into a seated position, roll the patient onto the same side as the wheelchair.

2.  Put one of your arms under the patient’s shoulders and one behind the knees. Bend your knees.

3.  Swing the patient’s feet off the edge of the bed and use the momentum to help the patient into a sitting position.

4.  Move the patient to the edge of the bed and lower the bed so the patient’s feet are touching the ground.

Pivot Turn
If you have a gait belt, place it on the patient to help you get a grip during the transfer. During the turn, the patient can either hold onto you or reach for the wheelchair.

Stand as close as you can to the patient, reach around the chest, and lock your hands behind the patient or grab the gait belt.

The following steps should be followed:

1.  Place the patient’s outside leg (the one farthest from the wheelchair) between your knees for support. Bend your knees and keep your back straight

2.  Count to three and slowly stand up. Use your legs to lift.

3.  At the same time, the patient should place their hands by their sides and help push off the bed.

4.  The patient should help support their weight on their good leg during the transfer.

5.  Pivot towards the wheelchair, moving your feet so your back is aligned with your hips.

6.  Once the patient’s legs are touching the seat of the wheelchair, bend your knees to lower the patient into the seat. At the same time, ask the patient to reach for the wheelchair armrest.

If the patient starts to fall during the transfer, lower the person to the nearest flat surface, bed, chair or floor.

Alternative Names
Pivot turn; Transfer from bed to wheelchair

American Red Cross. Assisting with positioning and transferring. In: American Red Cross. American Red Cross Nurse Assistant Training Textbook. 3rd ed. American National Red Cross; 2013:chap 12.

Timby BK. Assisting with basic needs. In: Timby BK, ed. Fundamentals of nursing skills and concepts. 10th ed. Philadelphia, PA: Wolters Kluwer Health: Lippincott Williams & Wilkens; 2013:unit 6.

Review Date 10/29/2015

“Everything You Need to Know About Caregiving for Parkinson’s Disease” – Book Review

Brain Support Network volunteer Denise Dagan recently read the book “Everything You Need to Know About Caregiving for Parkinson’s Disease,” and shared a short review.



Denise’s Review of

“Everything You Need to Know About Caregiving for Parkinson’s Disease”
by Lianna Marie, published 2016

This book is #6 on Caring.com’s list “8 of the Best Books About Caregiving” published in 2016.

The author is a fellow caregiver, Lianna Marie.  Her mother has had Parkinson’s for 25 years.  The writing style and organization is direct, no-nonsense, concise, and comprehensive.  The font is even a bit bigger and double-spaced for older eyes.  I quite enjoyed the short, thoughtful, quotes from famous people at the beginnings of each chapter.

My criticisms would be that it seems not to go into depth on any topic, but wait until you get to Part 5, “Getting Practical: Caregiving for Parkinson’s.”  Here’s where we get to the meat of this book.  Also, it’s a tad repetitive, but she’s emphasizing some points, and topics do overlap.  Finally, she only cites [only two websites as sources of online information].

The organization is in nine parts:

1. Caregiving 101 – only nine pages, but they spell out the practical burdens of caregiving and ask you to consider whether you should take on the task.

2. What to Expect – You’ve said, “Yes.”  Now, you need a plan.  Get documents in place, make a budget, set boundaries, and get help.

3. Emotional Aspects – Notice this loop: “…you get stressed out from your caregiving duties, which then makes your loved one stressed out, causing them to lose mobility, which leads to both of you being more stressed out, and so on.”  Avoid the loop by taking her advice.  I also like that she talks specifically about guilt, and resentment in this section.

4. General Caregiving – “Caregiving is a process of trial and error.  You will make mistakes from time-to-time, but learning from them is the key.”  This section briefly discusses some things not usually covered in a caregiving book, like, How to help when help isn’t wanted, What not to do when caregiving, and What to do when no one will help.  I yearned for more detail on that last topic, but a book can’t solve such complex problems, and it does get you thinking along the right lines.

5. Parkinson’s Caregiving – The meat of the book begins by giving a heads-up for early, mid, and late stage Parkinson’s caregiving issues, while subsequent sections get into specific tips on Home safety, Mobility, Preventing falls, Freezing, Medications, Hallucinations, Weight loss, Drooling & dry mouth, and Swallowing.  Her advice is spot-on.

6. For Spouses – Unique to this section is setting boundaries.  Friends, family, even doctors and nurses may say, “Don’t worry, the wife/husband will do it,” but everyone has limits and it’s okay to express that you’re completely overwhelmed.  Also of interest is a discussion of anger and resentment, even how Parkinson’s may affect your sex life.

7. Getting Help – In addition to the usual respite and housing options, this section addresses disability benefits and how to pay for caregiving costs with web links to US, UK, Canada, and Australia government aid sources.

8. Caring for You – You can’t be there for your family if you don’t put your own self-care first.  In finding the will to make time for your own self-care  you may have to overcome personal barriers, like negative thinking, feeling selfish, or hollow promises (like, “I’ll never put you in a home.”).  Uniquely, this section includes tips on how to avoid caregiver weight gain.

9. Tough Caregiving Decisions & Issues – She saved tips on the biggest issues for last:  When is it time to take away the care keys?  Convincing someone they need in-home care. The dreaded nursing home decision.  Keeping the peace in the family.  Parkinson’s and dementia at once.  Anticipatory grief.

Caregiver Resources – US, UK, Canada, and Australia  caregiver organizations, financial resources, housing help, online caregiver resources, online forums/support groups.

Helpful Gadgets for People With Parkinson’s – grabbers & reachers, LaserCane, Medical Alert System, fall detectors, handheld massagers, big button cell phone, automatic pill reminders, and Skype.

– Denise

“Worker Bees, Watchers & Talkers~ Which Kind of Caregivers Are You?”

Barbara Karnes, RN, is a well-known hospice nurse.  She has a website (bkbooks.com) that posts questions from healthcare workers (often hospice staff) and Barbara’s answers.

In Monday’s post, the question is about the main caregiver getting burned out and becoming irritable.  In Barbara’s response, she said that there are different roles to be played within a family – worker bees, players, watchers, talkers, etc.  We get stuck in those roles and burn-out is common, especially among worker bees.
At our caregiver support group meetings, we also see a lot of worker bees. Perhaps Barbara’s suggestions will help.
Here’s a link to the Q-and-A:


“The Right Way to Fall” (New York Times)

Here’s another interesting article from Tuesday’s New York Times about the “right way to fall.”  Apparently young kids are the best fallers because they have no fear or embarrassment; they don’t try to catch themselves.

The article mentions seeing a physical therapist to assess your weaknesses and prescribe home exercise for strength and agility.

Besides working with a PT or a fitness instructor knowledgeable about neurological disorders, note that there are also lots of fall prevention classes taught in many communities.  “A Matter of Balance” classes address the fear of falling.  For a list of fall prevention classes in Northern Caifornia, see:


Falling tips given by the NYT article are:

* “The number one thing to remember … is to protect your head. So if you find yourself falling, pivot to your side and tuck in your head.”

* “The other thing to avoid … is ‘foosh,’ an acronym for ‘falling onto outstretched hands.’ If you do that, all the force of impact will be concentrated there, raising the risk of breaking your wrist.”

* “Instead, if you feel yourself falling, experts said you should bend your elbows and knees and try to take the hit on the fleshiest parts of your body, like the side of your thigh, buttocks and shoulder.”

* “The key is to not fight the fall, but just to roll with it, as paratroopers do.”

* “Difficult as it may sound as you’re hurtling toward the ground … experts said it’s important to relax as you fall. You’re less likely to hurt yourself if you soften up all your muscles and exhale.”

Note that quite a few of the comments called this “hogwash!”  So “reader beware.”

Here’s a link to the full article — you be the judge!


The Right Way to Fall
New York Times
By Kate Murphy
Jan. 24, 2017