Charlie Robinson's Blog

FLORIDA NURSING HOME CARE COSTS JUMP AGAIN

You've noticed it at the grocery checkout and at the gas station, but did you realize how much nursing home costs have gone up? Probably not unless you have a loved one in a nursing home. According to Genworth Financial at www.genworth.com, here are the Florida State Median Annual Care Costs in 2012: Nursing home costs between $78,475 and $84,552 a year. Assisted living apartment could be as much as $33,000. If you choose to stay at home (and can afford it), you may pay from $38,896 to $41,184 annually for aides and services. If you apply for Medicaid, our state government has recognized how expenses have gone up by increasing the average monthly private pay nursing facility rate from $5000 to $6880 per month in February 2012 under the Florida Administrative Code. You could transfer or gift $6880 and face only one month penalty. A certified Elder Law attorney can help you put in place a life plan that will make full use of current regulations and laws. This is not something you want to put off until crisis hits.

 

A CRY FOR HELP

The following is a story about a fictional family called the Darlings. Dad died three years ago. He left Mom a substantial estate, including valuable real estate, stocks and bonds. Mom has been declining in health and mind.

She loves email and keeps in touch with grandchildren, nieces and nephews. She enjoys the photos they post. She also likes to look up Bible questions and medical advice on the internet.

One day she gets an email from an unknown financial advisor. Then he calls her on the phone to tell
her about an exciting privately managed fund she can buy into. Only a limited number of people will be offered this golden opportunity. He tells her not to talk with anyone about this “can’t-lose-investment”. She mails check to him. She gets a couple of checks from the investment in the following months, but later the fund folds and she loses entire $20,000 of the investment.

Three months later: Mom gets a phone call from person claiming to be friend of son traveling in Africa volunteering with Doctors Without Borders…son fell ill and needs $5000 today to get home for emergency care … Mom wires money immediately as directed. Later when talking to her daughter in law in Indiana she learns her son is safe at home, never went to Africa or anywhere.

Family members: Mom lives in Florida. Married Doctor son lives in Indiana has two children; nmarried
Chemist son lives in Georgia; Divorced daughter teacher lives in California, has three children; Married daughter lives in South Carolina, has two children; Unmarried daughter lives in New York, fashion director for large department store.

Family learns about scams and lost money, and call conference with Mom. Doctor son says track down callers and sue. Chemist son wants to close checking account and open new one where only he can issue checks. Teacher daughter argues they must allow Mom to be independent. Unmarried daughter agrees for independence but says someone must check finances regularly. Mom says she wants to stay in her home and get help to come in when she needs it.

The doctor son has talked by phone with his brother and sisters about a live-in caregiver, assisted living facility, moving in with one of the family members, selling her home, or selling other real estate, but finds no agreement on what to do or how to proceed. At this point the married daughter in South Carolina calls Mom’s estate planning attorney in Florida and explains their dilemma. The attorney suggests calling in an elder and adult family mediator and the attorney sends her a list of
certified mediators. The South Carolina daughter calls her siblings to tell them of her conversation with Mom’s attorney. The doctor offers to interview by phone the listed mediators. He recommends one of the elder and adult family mediators who appeared to have extensive experience in similar family situations. They all agree to pursue this option and to participate in the mediation procedure and ask the doctor son to make the arrangements which he does.

By telephone conference with Mom and all siblings, the Mediator explains basic process of arbitration including the normal steps in building a consensus: Initially the Mediator will talk with each
individually, in confidence, by phone. During these interviews the Mediator will attempt to learn what are the priorities, the concerns, interests, opinions, and personal feelings of each one, and how each sees the outcome of this mediation for their Mom.

The Mediator will sort out the negative and positive comments and prepare a brief list emphasizing
the positive ideas put forward containing the elements that will bind the parties together. Many times it takes real effort to find common ground on which to proceed. He also proposes the ground rules for a round-table conference with all participants including Mom, such as no disparaging remarks about each other, or complaints about past grievances, or reasons for pushing an agenda based on some kind of revenge or getting even.

This concludes the first step … getting the right people to the table and learning
what each participant sees as the dominant issue. Next the Mediator summarizes the issues.

ELDER MEDIATION

THE GREAT GENERATION DIVIDE

Bringing together two or three generations to come to a satisfactory and viable plan for eighty-year-old parents is no easy task. Certainly it is not an easy task for many family members each having their own agenda and no one strong enough to arbitrate. Perhaps one sophisticated son or
daughter will acknowledge that they need a mediator, and seek out an Elder and Adult Family Mediator for help.

Conceding that all the sons and daughters want the best care for their parents, the solutions to promoting such quality of life are diverse. Finding the one or two best ideas from among the possibilities suggested by the family takes the expertise of the mediator. But first, the mediator will seek to fully understand the values, the ambitions, the fears and concerns of each party.
Finding common interests among the parties in a safe environment where everyone has their say will lead the way to options that take into account some of those commonalities. Then they can brainstorm the options, considering, evaluating, prioritizing until one plan becomes clear to all present.

Many times these differences are battled out in court, where there is always a “winner” and a “loser”. In mediation, you are most likely to have a win-win solution.

As a Court Certified Mediator, I will discuss how elder mediation works in future posts.

WHY DO YOU NEED LONG TERM PLANNING?

One of the core services my office provides is long term care planning. Often families do not understand what is meant by a “long term care plan”. They have their Will and maybe Trust and their Living Will, Health Care Surrogate and Durable Family Power of Attorney. They have their retirement savings, bank accounts, properties, perhaps their stocks and bonds. They believe they have done all the “planning” necessary. What they are missing is a viable plan to take care of them in the event of incapacitation such as a chronic illness, stroke, ALS, Parkinson’s, or Alzheimer’s disease. We all like to believe ‘this won’t ever happen to me.’ But the fact remains, the very real danger is out there, as the following survey shows:

The original content of the following article is from the Alzheimer's Reading Room http://www.alzheimersreadingroom.com.

The MetLife Foundation Alzheimer’s Survey “What America Thinks,” conducted by Harris Interactive, found that most people are not preparing for the strong possibility that they or their family members will develop Alzheimer’s, despite significant fear of the disease. When asked which of five major diseases they fear most, Alzheimer’s disease was second (31%) behind cancer (41%), but far ahead of heart disease (8%), stroke (8%) and diabetes (6%). The survey was conducted by telephone with 1,007 adults in September 2010; it follows similar research from 2006, the year of the 20th MetLife Foundation awards presentation.

The current study found:

• 44 percent of adults have family members or friends with Alzheimer’s disease.
• Nearly a quarter (23%) of adults are extremely or very concerned that they may someday provide care for a loved one with Alzheimer’s, an increase from 18% in 2006.
• Only 18 percent of adults say they have made any plans for the possibility of getting Alzheimer’s disease, compared to 12 percent in 2006. Fewer than half of all adults claim to have talked to their families about Alzheimer’s disease (41%).
• Thirty-three percent have considered what care options would be available to them in the event of AD; 44 percent have designated who would take care of them. Slightly more than one in five (21%) adults claims to have made any financial arrangement for the possibility of AD onset.

Call my office for more information on long term care planning.

See my website: www.charlie-robinson.com.

LONG TERM CARE PLANNING

MOST AMERICANS DON'T PREPARE FOR LONG TERM CARE PLANNING, SURVEY SAYS.

Nearly eight out of ten Americans acknowledge the increasing need for long term care (LTC) planning, yet nearly half (45%) aren't sure how they will address future LTC needs, according to a study released by Northwestern Mutual Life Insurance Company.

The study also found that almost two-thirds of people believe the cost of providing LTC services will rise faster than the return on their savings, and that slightly over half believe that long term care costs will double in the next 14 years. Yet, less than one-third are currently saving for future LTC needs.

"There is a clear disconnect between what Americans understand about long term care needs and the steps they've taken to prepare," said Steve Sperka, Northwestern Mutual vice president of long term care. "In order to create flexibility and options in retirement, people need to address long term care risk as part of financial security planning."

Northwestern Mutual's survey was conducted online by Harris Interactive from October 11-13, 2011, and comprised 2,194 American adults ages 18 and older. According to the survey, an estimated 27% of women report that they have been a caregiver compared to 22% of men. Additionally, two-thirds of women polled said that they're more likely to report that the physical demand of caregiving is their biggest challenge versus less than 50% of men. Compounding the issue is the fact that women, on average, live five years longer than men, according to data from the Centers for Disease Control. Despite this fact, the study showed that fewer women are saving for their future needs (24% for women vs. 32% for men).

"There is no doubt that long term care is a pronounced issue for women, who tend to live longer and are more likely to provide care during their lives," Sperka added. "This just amplifies the importance of planning for women, in order to maintain control over their finances and lifestyle through retirement."

See my website www.charlie-robinson.com for more information on long term care planning.

FLORIDA MEDICAID 2012

MEDICAID 2012

MEDICAID QUALIFICATIONS 2012 during and after Application Process

• Medicaid applicant available asset limit in 2012 is $2000.
• Medicaid applicant gross income limit in 2012 is $2094.
• Community Spouse available asset limit in 2012 is $113,640.
• Home Equity Exemption in 2012 is $525,000.
• Assets below the Medicaid limit one day of the month of application.

MEDICAID APPLICANT

During Application: Asset Limit under $2000---Income Limit under $2094

After Approval: Asset Limit under $2000 ---Income Limit under $2094.

COMMUNITY SPOUSE

During Application: Asset Limit under $113,640---Income Limit No Limit

After Approval: No Limit---Income Limit No Limit

Qualifications for Florida Institutional Care Program (ICP) Medicaid

• Appropriately placed in a nursing home.
• Determination by personal physician.
• Evaluation done by CARES unit of Department of Elder Affairs (DOEA).
• Assets for Medicaid applicant under $2,000 one day of every month of Medicaid benefits.
• Income for Medicaid applicant under $2,094 or a Qualified Income Trust (QIT) in place and funded.
• Gross income includes any deductions such as Medicare Part B premium deduction from Social Security.
• Qualified Income Trust must be established and gross income deposited in QIT account the first month of qualification.
• Income must be deposited into QIT account each month.
• Under no transfer penalty.
• A transfer of assets for less than market value to somebody other than a spouse causes a period of ineligibility.
• Application for Medicaid benefits is not made until all of the abovfe criteria have been met. Applying too soon may cause additional disqualification for benefits.

See my website: www.charlie-robinson.com for details.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

GRANNY DUMPING FOR PROFITS

Florida’s most vulnerable elders are going to be dumped literally out in the cold so that managed care organizations can make a profit.

Hello.  I’m Charlie Robinson an Elder Law Attorney in Clearwater, Florida.  I am a Board member and past President of Area Agency on Aging of Pasco-Pinellas, Inc., Board Member of Florida Council On Aging , Vice-Chair of the Dept. of Elder Affairs Advisory Council, past Chair of the Florida Bar Elder Law Section and daily advocate for Florida’s senior citizens.  The following is my testimony at the public hearing before the Agency for Health Care Administration June 15, 2011, on the Florida Medicaid reform legislation passed in 2011:

Florida is poised to place thousands of long term care patients at risk of literally being left out in the cold without services. 

Florida’s current system is unsustainable. We have 60,000 plus on waiting lists for senior services. Our AAA averages over 2,000 people on waiting lists for Pasco and Pinellas alone. I strongly believe that the legislation passed as HB 7107 is going to make our problems worse, not better. The recession has added many to the Medicaid rolls and our current system will break at some point and that point is not far away. Any one of several challenges can break our system. Alzheimer’s disease without a cure can break the system. The runaway instance of autism in children can break our system. The baby boomers cannot expect the services that have been delivered under the current system with the age tsunami that is coming soon.

Our challenge is to design a new system that works. That is not what is happening in Florida. We are taking a system that has been deemed a failure by every neutral organization that has studied the six year Managed Care Demonstration project in Broward, Duval, and the rural counties around Duval. What do you do when it is clear that the experiment is a bust? You choose a different population, in this case elders, and you make it statewide. This is like the retailer logic that “We will lose money on every sale but make it up in volume.”

Based on budget concerns in difficult economic times, Florida has passed legislation that will provide bonuses to managed care organizations for dumping Florida’s seniors out of nursing homes.  Remember years ago when family members were accused of granny dumping into nursing homes. Now we will see granny dumping out of the nursing home. These provisions incentivizing discharge from nursing homes will cause life-threatening harm to Florida’s most fragile and vulnerable citizens.  It creates a profit incentive for managed care organizations to discharge long term care patients from skilled nursing facilities and can only be described as “Granny dumping for profit.” Even worse yet, granny may have to get on a brand new waiting list to access services that don’t meet her care needs in the community.

According to the May 27^th 2011 edition of HealthNews Florida, Florida HMOs enjoyed $675 million dollars profit in 2010.

Florida’s Medicaid Reform legislation replaces the current level of care, which is determined by the verifiable criteria based on activities of daily living and level of cognitive impairment, with ambiguous need for care criteria that appear to be based on vague and indeterminate risk assessments.  Managed care companies will be paid bonuses for evicting the elderly from nursing homes based on vague, arbitrary need for care determinations.

Protections and grievance procedures to prevent these evictions and other egregious violations by managed care plans, if they exist, are inadequate and insufficient to protect Florida’s most fragile and vulnerable citizens. 

The irreparable harm that will be brought upon Florida’s most defenseless citizens by this scheme is made even more deplorable when other provisions in Medicaid Reform are taken into account.  There is no validated data to track inappropriate denials of coverage or fraud in this system so Granny dumping for profit will go undetected by the minimal regulatory system.  Further, the at risk citizens who will be evicted, can be dumped into unsafe environments with no services and no funding available for life-saving services because Florida’s Medicaid Reform states there is no right or guarantee for home and community based services despite the profit incentive to managed care organizations to put them there.  These vulnerable elders can then be subjected to share of cost requirements for services that exceed their income, making necessary and life-saving care beyond their reach. 

This scheme was passed on the hope of saving money for Florida’s tax payers.  There is no evidence that Florida’s tax payers will save money with this scheme to dump Florida’s elders for profit.  However, there is ample proof in Florida, including a recent expose that grabbed national attention, that there is little or no protection for Florida’s most helpless citizens whose last hope and only safety net is Florida’s Medicaid program and the life-saving services it funds.

The Nursing Home Diversion program experience is a terrifying model for the new managed care program. Diversion does not pay a penny for room and board. Some assisted living facilities accept granny’s retirement income as her room and board charge but they don’t have to do so. We have seen many situations that work exactly like this 1,2,3 example:

        The ALF charges $3,000 per month, allocating their bill as $1,000 for care and $2,000 for room and board. Diversion provider pays approximately $1,000 per month to the ALF out of the capitated rate of $1,600. Granny’s assets are under $2,000 and her only source of income is her Social Security check of $1,000 per month. That leaves her $1,000 short of the ability to pay her share of cost to the ALF. If there is not a family member able to pick up $1,000 per month shortfall, granny is on the street. If she is married and her husband pays the $1,000 difference, he is being impoverished. It is rare in these economic times that the adult children, struggling financially in their own right, are able to make up the shortfall.

Given the imminent, irreparable danger to and the inadequate safeguards, funding and protections for dual eligibles, those persons qualified for both Medicare and Medicaid  and Florida’s elderly who need long term care, combined with inadequate resources and lack of experience to address the special healthcare needs of these fragile and vulnerable citizens , they must be excluded from this experiment.

Instead, let us challenge our best, brightest, and most experienced Floridians to work together designing a new system that will start with more commitment to the aging services community to provide home-based services and get rid of the waiting lists. The inability to receive community based care results in more nursing home admissions.

We don’t need managed care gatekeepers to add to the expense burden. Florida should be the living laboratory to figure out how to handle the age wave to provide innovative solutions. This managed care fiasco is a big step backwards for a Florida that can’t afford to drive in reverse much longer.

 

JAN'S STORY

 JAN’S STORY by Barry Petersen

 “Have the courage to read this book with an open heart and mind, talk about it, and interrupt the silence.” 

-Lisa Snyder, NSW, LCSW, Director, Quality of Life Programs, UC-San Diego Shirley-Marcos Alzheimer’s Disease Research Center

  Jan was 55 years old when diagnosed with Early Onset Alzheimer’s Disease.  Barry and Jan were living in Tokyo at the time.  Barry knew nothing about the disease that was about to destroy their life together. 

 Jan and Barry Petersen were the perfect couple.  Both were news journalists for CBS in Seattle when they met, fell in love, and married.  Barry became an award-winning CBS News Correspondent.  Jan continued her news reporting in Japan when Barry was offered a job as the CBS Tokyo correspondent.  Jan traveled with him to Moscow, Beijing, Sarajevo and London as well.  They were very popular wherever they lived and enjoyed entertaining.

  After Jan was diagnosed with Alzheimer’s, Barry kept a record of their personal day by day venture into this unknown world.  For a time, Barry was a sole caregiver, trying to keep his job and take complete care of Jan.  What makes this story different from many others I have read is Barry’s recognition of his own needs as her 24/7 caregiver and how he adapted to getting on with his life.  Until he reached out to a friend, he had no idea that many areas have excellent community care services available.  I will be describing some of our local senior agencies and their care services in future postings

 

 

 

ALZHEIMER PRAYER

Please don’t ask me to remember,

And don’t try to make me understand.

Let me rest and know you are with me

And kiss my cheek and hold my hand.

I am confused beyond your concept,

Also, I am sad and sick and lost.

All I know is that I really need you,

And to be with me at all cost.

Please don’t lose patience with me,

And don’t scold or curse or cry.

I can’t help the way I’m acting,

And can’t be any different though I try.

Please just remember that I need you,

And that the best of me is gone.

Please don’t fail to stand beside me,

And Love me till my life is done.

Reprinted with permission from author C.F.Davan, Jr.

He is the caregiver for his wife Martha.

This is what she would say to him.

TEN SIMPLE SOLUTIONS FOR CAREGIVERS

The last article posted to this Blog, “Why You Need to Change”, introduced the reader to Jo Huey, author of the book “Alzheimer’s Disease: Help and Hope”. It described three of her ideas of changes caregivers might make: Never Argue, Always Agree; .Never Ask the Patient to Remember, Always Reminisce; Never say, “I told you”, Always Repeat and Regroup. In this post we will outline more solutions proposed by Huey.

TEN ABSOLUTES

ABSOLUTELY NEVER

1. ARGUE instead AGREE

2. REASON instead DIVERT

3. SHAME instead DISTRACT

4. LECTURE instead REASSURE

5. SAY “REMEMBER” instead REMINISCE

6. SAY “I TOLD YOU” instead REPEAT/REGROUP

7. SAY “YOU CAN’T” instead DO WHAT THEY CAN

8. COMMAND/DEMAND instead ASK/MODEL

9. CONDESCEND instead ENCOURAGE/PRAISE

10. FORCE instead REINFORCE

©Jo Huey

NEVER REASON; ALWAYS DIVERT

If we are going somewhere, we normally give a reason, i.e.  “I’m going to the grocery because we need milk and bread.” Or, “I’m going to the Mall to look for a new pair of shoes.” We often explain why we read a particular book, or made that remark to your mother-in-law. Jo Huey says, “As a society, we talk in a manner that includes reasons for everything.” And when we speak to a person with Alzheimer’s Disease (AD) we assume we need to give even more reasons for why they must do this or that because they have trouble understanding. But the exact opposite is true. The more explanation we give them the more confused they become. In Huey’s example of reasoning, she explains to the AD patient why they must take a bath right now by giving them a sequence of events: “We’re going to take a bath because you have an appointment with the doctor, and then we are going to lunch with Judy. If we have time we’ll go shopping as you need new shoes.” Giving the reasons for taking a bath is very frustrating to the AD patient and often makes no sense at all to them. They simply cannot follow a plan and are lost from the beginning. As a result, the first thing, taking a bath, becomes a major barrier.

Read how cleverly Huey diverts the patient: “Please come in here with me. Oh, I know you aren’t going to take a bath. Let me help with that shoe. Oh, I know you aren’t going to take a bath. Just slide this off over your arm. Oh, I know you aren’t going to take a bath. How does this water feel, it seems warm enough. Oh, I know you aren’t going to take a bath. Just step right in here.” Continue to repeat their objection and move forward by diverting their attention to one task at a time, i.e. “Let me help with that shoe”.

For a trip away from the house, you need to plan but not out loud. Again take on one task at a time: first eating breakfast, and while the patient is eating, get everything ready for the bath and lay out clean clothes. When clean and dressed, suggest that it would be nice to go for a ride and if they ask, you could say we’re going downtown, to the parking garage, and then up to the third floor of the building. If they like going to see the doctor, tell them, but if they don’t, then you leave that out. Huey says if they are not cooperative with the doctor, the doctor needs to observe this behavior. Listen to what the patient says to the doctor and if it is not accurate, make the point with the doctor yourself but do not talk about the patient to the doctor in front of them. Be honest with the patient but keep everything as simple as you can.

NEVER SHAME, ALWAYS DISTRACT

We mistakenly assume that the person with AD does not get their feelings hurt. This is far from the truth. True they have problems with memory, perception, and reasoning, but their emotions are not impaired. If you observe closely you see that they are more sensitive to you, to what you say, and to how you say it. It is important to remember that how they understand what you said and how they feel about it are two very different aspects of the patient. As their understanding wanes, their feelings intensify.

The patient feels shame and embarrassment even when you very kindly point out their mistakes and correct them. Especially in front of others. An elderly lady was leaving the auditorium in the crowd but not moving fast enough for her daughter, who said to her mother “I knew you couldn’t get down those steps. This is the last time I’m ever taking you to a performance.” The mother looked like she was going to cry she was so embarrassed. How much easier it would have been to quietly help her mother, and then say something about the great performance they both enjoyed. If the daughter was her mother’s caregiver, she needed to keep good feelings going as they will both need them as the disease progresses.

NEVER LECTURE, ALWAYS REASSURE

Jo Huey gives this example: “You have got to go back to bed and get some sleep. You have been up half the night. Why on earth did you empty these drawers? Who is supposed to clean up this mess? I suppose tomorrow you will want to sleep all day and we won’t be able to go to Carole’s house and help with the children. I am just too tired to deal with this so you have to get in bed and go to sleep right now....etc.”

Ms. Huey says what she could have said was: “I can’t sleep either. Let’s go to the bathroom. I need something to drink (give them a drink). Try to lie down again (pat the bed). No? How about some cookies and milk? Try to lie down again (sit beside the bed and pat the bed). Doesn’t it feel good? (Stay until settled or asleep, rub their hand, forehead, arm).”

Did lecturing the patient do any good? No. Did reassuring him by little things like bathroom trip, a bite to eat, rubbing the back or arms or maybe even legs? Probably. Reassurance is more likely to be successful than a scolding.

NEVER SAY “YOU CAN’T”, ALWAYS SHOW THEM WHAT THEY CAN DO

No one likes to be told that you can’t do something. Hearing those words may ‘get your back up’ and you’re more determined than ever to do it. A person with Alzheimer’s Disease feels the same way when they hear those words “you can’t put your shoe on over the other; you can’t put your sweater on your legs; you can’t put two shirts on over each other; you can’t go outside, you can’t go home because you’re already home.” What you can do is show them where their arms go in the sweater, that the shoe goes on the other foot, and agree with them “I want to go home too.”

The task of dressing can be very confusing to the person with AD. Huey says: “Just imagine how you must feel to not even know how to get dressed anymore.” If you get dressed and your spouse says “You aren’t going to wear that are you?” You defend yourself; you strike back at the person who made that remark...that’s the normal response. Huey on page 74 says: “I would suspect that the person with AD spends most of their time in this state of frustration and anger because the world constantly looks at them askance and reinforces with negative verbal terms that they have done yet another thing wrong. They can’t keep track of what is wrong or what to do but they can keep track of the feeling that they are inadequate and you are reinforcing that inadequacy and you become The Enemy.” You want to stay away from that designation at all costs.

NEVER COMMAND OR DEMAND ALWAYS ASK OR MODEL

Excerpt from “Alzheimer’s Disease: Help and Hope” page 78:

I had spent one of those 4-hour stints that seemed like 24 in the doctor’s office with a little lady with Alzheimer’s Disease. We, my little lady patient and I, had finally finished, we had made it through the Dr. appointment and had finally gotten into the elevator and out of the car to Go Home! We were both exhausted and so Done with the entire day. We got to the car, opened the door and you guessed it, RIGIDITY SET IN. ....She had one leg in the car, the other on the ground, one hand on the top of the door opening, the other on the door and her arms and legs became locked in a state of rigidity. If you have experienced this scenario you know that this frozen state is nearly impossible to change. She apparently became frightened as I was trying in vain to get some body part, like a hand or a leg, to release so we could get into the car. She leaned out her sweet little head and began to pitifully yell, “Help, Help, I am being taken to be killed.” ... I have to admit that I knew I would soon be in jail and the only thing I could think to do in my overtaxed state was to hide. I literally ducked behind her, sat down in her seat, and she sat on top of me, which released the rigidity. I was able to slide out from under and get her to move her other leg into the car and we went HOME! I realized that what I had done was modeling what she should do and surprisingly she did it.

The author shows you again why you need to CHANGE. All the things you want the patient to do throughout the day can be successfully accomplished if you will SHOW them by doing it yourself first. When you command or demand, the patient “models” you anyway and “demands” not to do what you want. Whenever you can, try to show the person what you want them to do. Life will be much easier!

NEVER CONDESCEND, ALWAYS ENCOURAGE OR PRAISE

Watch out: talking about an AD person as though they were not there, as if they were deaf and dumb, is condescending and insulting, and is one of the first lessons caregivers need to learn. The patient feels they are invisible and becomes angry. Speak directly to them in a normal voice. If you are relaying information to another person, try including the patient by putting your arm around them and making them a part of the idea, such as: “Mary and I kind of had a bad day today; the arms of that sweater just weren’t where they were supposed to be; the car door got in our way and we had a hard time getting in; and the doctor didn’t give clear instructions either.” Then if you have specific information the other caregiver needs to know, write it down. There is no question about what you want them to know, and the patient isn’t disturbed by what you write.

The AD patient needs to be encouraged to do for themselves as much as they can without your help. Don’t try to feed a person who can still feed themselves, even if it is a little sloppy. Let them get dressed as best they can. Say things like, “That was great, Helen. You did just fine.”

NEVER FORCE, ALWAYS REINFORCE

Suppose the patient needs a bath, and the caregiver says “Now you are going to take a bath because you haven’t had one for two weeks. You must come in here right now and get ready. Hurry up, I don’t have all day.” The patient doesn’t want you to undress them and balks. Here’s how Jo Huey “reinforces”: “I know you already took a bath, come right in here.” Or, “I know you don’t want a bath, let’s take off this shoe.” Or, “I know you don’t want a bath, this lady is helping, and it will be O.K.” If you can’t get them to take off clothes, or let you remove clothes, then remove what you can and put him or her in the shower and keep talking about how good that warm water feels. If you have to get in the shower with them to soap and rinse, that will reinforce as well. Huey has many ideas on encouraging the patient to bathe or to eat, on inappropriate language, on incontinence, and on toileting.

What if they take something that doesn’t belong to them? Trade the item with something else, be patient and kind, be relaxed. Have a ‘bag of tricks’ always ready to distract them. Trying to reason doesn’t work but kindly words might.

Throughout her book Jo encourages the caregiver to take care of themselves. Too often the tireless, devoted caregiver does not live as long as the patient!. Accept help from others. Have regular times during the day to get away from the patient, and scheduled days completely out of the house. Maintain some portion of your normal life. Then you will be a much better helper for the AD person.