The Hidden Restraint – Part 2 – Living Environment

Not all those who wander are lost.

by Dr. Al Power, ChangingAging Contributor

Recently, I posted a provocative argument for considering locked doors as physical restraints.  I have received many comments about the post; and as promised, I am following up with a second installment (of three), in which I will give some guidelines for those who wish to take up the challenge.

Grab a cup of  your favorite beverage—this is not a short post. Unlocking doors is neither quick nor easy; otherwise everyone would be doing it. For those who cannot visualize how this can be done safely, much groundwork may need to be done before you can succeed.

In this installment, I’ll start with a few general comments, and then address issues around the person’s current living environment.

First off, it is important to emphasize that we will never succeed in this endeavor until we believe it is possible. Those who continue to embrace medicalized views that blame “wandering” and “exit-seeking” on brain disease will not have the insight to recognize the structural, relational, and operational factors that contribute to the situation. (Photographer Dewitt Jones once said, “People say, ‘I’ll believe it when I see it’; but I say, ‘You won’t see it until you believe it.’”)

So, as I mentioned in Part 1, it is best to start by imagining that people’s perambulations are not random but purposeful, even if that purpose is not immediately obvious to us. Let’s also drop the “wandering” and “exit-seeking” terminology, so as not to overmedicalize people’s actions. This is not simply a “BPSD” (Behavioral and Psychotic Symptoms of Dementia). When you see the person instead of the disease, you can see agency instead of confusion.

Second, keep in mind that every one of us walks every day, whenever and wherever we wish. So walking—inside and outside—is normal behavior. It can certainly relate to a person’s distress or indicate an unmet need, but often it is merely an expression of that which the rest of us take for granted.

Having said that, there are two broad topics we need to explore. One is to look at the attributes of our current care environment (structural, relational, and operational) that might cause a person to become distressed or express a need to go elsewhere. Until we address these, the number of people wishing to leave at any given time will make it much more challenging for us to accommodate them.

The second broad topic is to apply the use of design, technology, and operations to afford people the right to walk freely and safely when they wish to do so. That will come in Part 3.

Now, let’s go deeper, behind the scenes. Let’s look at the subtle factors that may underlie people’s desire to leave. Unless these are recognized, all the technology in the world will not suffice to provide a sense of well-being. This discussion will not be exhaustive, but will give enough examples to get you started on auditing your own community or home.

Let’s start with the structural design, which is easiest to visualize and is also a very important factor. And as I often do, let’s employ The Eden Alternative Domains of Well-Being™ as a framework. In my adaptation of this model, I use the following ordering of the seven domains: identity, connectedness, security, autonomy, meaning, growth, and joy. If these are truly universal human needs, then we can look to see how well the built environment succeeds in these areas.

People desire comfort and familiarity (identity, connectedness). When living with changing cognition, they particularly need an environment that is not overly stressful or challenging to navigate (security, autonomy). The environment also needs to support their continuing sense of purpose, ability to engage and evolve as a person, and desire to be happy and content (meaning, growth, joy). In many ways, most long-term living environments fall short.

The layout of many living areas is not what anyone would encounter in her/his own home: long hallways, with door after door after door. There might be a “memory box” outside one’s room, but how much does the person relate to what is placed inside it, among the sea of boxes along the wall? Is it at the appropriate height for someone standing or sitting in a wheelchair to see? And does one hallway look like another? 

A company in Netherlands is producing customized door overlays that resemble the outer door of the person’s previous home. Of course the attributes of the room behind the door also need to preserve one’s sense of home, in order for this to be successful.

What personal furniture and belongings do people have, and do these trappings continue to hold meaning for them? Did they give input in setting up the room to their liking? Is the person in a double room, which introduces another aspect foreign to our own homes? Is there anything outside the bedroom that holds meaning for the person, or will they feel ill-at-ease and disconnected in the public areas?

What about lighting and sound? A noisy or chaotic environment can cause distress and fuel the need to get away. Inappropriate lighting, color, and contrast can also confuse or disable people trying to navigate independently. (See Dementia Beyond Disease for a detailed discussion of these.)

All of the other intrusions of institutional living (overhead paging, nursing stations, med rooms and utility rooms in prominent locations, bed and chair alarms, crowded living areas, etc., etc.) should go without mentioning.

Look at all of these things very closely if you have a number of people who are constantly trying to leave—there is a good chance that you are causing their distress, not the dementia! (I’ll repeat that caution for the next two sections as well.)

Also, remember that it is not enough to fill a person’s room with trappings of a past life. This may only increase their desire to “get back home.” If we are to create home for people, we need to create that nurturing place within their new environment, or it simply reminds them of the old one they have lost. That means understanding how one’s identity evolves over time, and creating meaningful and individualized engagement and connections within the new living environment. Think of all the things that “home” means to a person—to what extent are we providing each of these?

Lastly, does your community look more like a luxury hotel or a fancy shopping mall than a home? It may look good on the website, but is it providing a sense of home for those who live there, or is it creating a sense of displacement—“I don’t belong here,” “I can’t afford this,” “I need to get home,” etc.?

Many structural changes can be made, short of tearing down the building and starting over. Examples include: breaking large living areas into smaller ones (using relatively low cost renovations, half-walls, creating households within neighborhoods, etc.); removing nursing stations and substituting a den, library, or sitting area with a desk; eliminating pages, intercoms, and alarms; attention to other aspects of noise, commotion, lighting, décor, and the color contrast on flooring or doorways.

And if you decide to renovate or build anew, stop building double rooms. I have never met a person outside the nursing home that would want to live in one if given the choice—you may well be building your own future home! The Green House Project has proven that we can have superior outcomes for the same or lower operating costs, using private rooms and en suite showers; and any potential cost savings in the construction of double rooms are outweighed by the loss of privacy, security, sleep quality, infection control, roommate conflicts, etc.

Are you getting the hang of this? Until we stop driving people away from their living areas, it’s hard to unlock the doors safely. On to relational and operational factors…

I have said many times that I truly believe that if we had dedicated staff assignments and used optimal communication and facilitation skills in our daily interactions, over half of the distress we see would disappear without any other interventions. My seminars and books devote a lot of time and ink to basic face-to-face interactions, because the way in which we relate with people can have tremendous effects on their well-being or ill-being, and their desire to stay or leave.

When our interactions do not recognize and support the person’s identity, and when we present people with lots of strange faces (either through staff rotation during care, or the appearance of people entering or cutting through the living area that don’t belong there), we erode familiarity and the trust that this is a place where they want to spend their days. When we erode people’s security (e.g., staff rotations, entering rooms unannounced, standing over people when we talk ) or autonomy (deciding for, doing for, not asking for input and guidance, not taking time to understand or be understood) people will naturally seek it elsewhere.

As implied by the above, relational factors can exist in the moment, but are also an outgrowth of the operations that underlie them, such as rotating staff assignments. (If you want to see the full reasoning behind my contention that 100% dedicated staff assignments “should be considered the standard of care”—and all the evidence behind that claim—see Dementia Beyond Disease.)

Examples of other operations that disrupt and distress people include: changing people’s rooms at our convenience; providing generic, diagnosis-driven activities that hold little meaning for the individual; following an organizational hierarchy that does not give hands-on staff the autonomy or flexibility to answer the needs of the moment; or trying to squeeze people’s unique rhythms into institutional schedules of waking, sleeping, and all the activities in between.

I will not revisit my arguments against segregated “memory care” here, but my books list a variety of ways in which such environments can further erode a person’s sense of well-being.

Before we wrap up, keep in mind that all of the above principles have counterparts in community-based living; in particular, the relational and operational aspects of daily life. Even a very familiar physical environment ceases to feel like home when one’s well-being is not supported in everyday life; and people’s desire to leave (even to say they want to “go home”) can be just as intense in their own houses. Dementia Beyond Disease discusses community-based living in much more detail.

Once again, until we have addressed all of the above factors—most of which would also bother any of us in our own living environments—we can’t even begin to consider brain changes as the causative factor for the person’s actions.

I think that’s a lot to chew on for now. Try auditing your own care environments—structural, relational, and operational—and see what else you can find. The path to unlocked doors may still be a long journey for your organization. But that’s all the more reason to start today, because—like other physical restraints—it will become the norm in time. Will you be ready?

In Part 3, we’ll talk about ways to begin to make the move to unlocked doors, and I’ll share a few stories.

About Dr. Al Power, ChangingAging Contributor:

Al Power is a geriatrician, author, musician, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities. You can follow his speaking schedule at http://www.alpower.net/gallenpower_schedule.htm

Reprinted from: http://changingaging.org/dementia/hidden-restraint-part-1/?utm_source=ChangingAging&utm_campaign=549c889a9e-hidden_restraint&utm_medium=email&utm_term=0_10c6c015a2-549c889a9e-57814809&mc_cid=549c889a9e&mc_eid=819b812096

The Hidden Restraint – Part 1 – Restraints

Imagine if we considered locked doors in memory care wards as restraints.

by Dr. Al Power, ChangingAging Contributor

Having given many seminars on restraint reduction 15-20 years ago, I am very familiar with how CMS defines a restraint. It’s any device, attached to or adjacent to a person’s body that prohibits freedom of movement.

So obviously a Posey vest fits the definition. But also a low chair from which a person cannot rise independently is also a restraint, even when not tied. The bottom line is that if you could move freely by yourself otherwise, and now you cannot, you are being restrained.

So by those criteria, what is another device adjacent to a person that prevents freedom of movement? How about…a locked door?

Now the Feds don’t define it as a restraint; but it fits the criteria. Imagine if in your quarterly QI reports you had to code every person behind a locked door as being restrained. How would that affect your profile?

Before you fill the comment box with questions about “How can we keep people safe without a locked door?” let’s consider a few other parallels with restraints.

Restraints were applied by well-meaning people (myself included 25 years ago) in order to protect people against falls and injury. The problem is, they didn’t do that. Subsequent studies showed that not only did restraints not prevent serious injuries—they also created severe emotional distress, due to the person being tied and feeling trapped. Furthermore, they took the focus away from understanding why the person wanted to move in the first place, thereby ignoring a host of unmet needs.

So it is with locked doors. While physical safety is always an important consideration, “security” comprises much more than physical safety—it also means emotional and psychological security, which includes such attributes as familiarity, trust, respect, dignity, privacy, and balance. The problem is that many things we do to increase physical safety help us to feel better, but actually decrease the sense of security felt by the person

.

So it is with the locked door. As I wrote in Dementia Beyond Disease:

Imagine that the person feels a need to leave because of one of a variety of reasons—that her children may need attention, that he has to go home from work, that she needs some exercise and fresh air, or simply that this place just does not feel like a place where he wants to stay all day. What will the reaction of each of these individuals be when confronted by a locked door? “You cannot go to your children,” “You cannot leave work,” “You cannot get any fresh air,” or “You must stay in this place that you do not like.

So once again, we have a staff-centered solution that actually decreases the person’s sense of security and increases both the level of anxiety and the very desire to leave as well! The person returns repeatedly to the locked door, bangs on the door, calls out for help, or otherwise expresses her distress. It is another self-fulfilling prophecy,  as the “special care unit” proves to be the home of the “most agitated residents.”

Like other restraints, the locked door also decreases staff members’ critical thinking skills. Once they know the person cannot leave, they stop thinking about why the person wanted to leave in the first place. I have a very simplistic way of looking at someone who tries to leave an area: she is either trying to find something that is not there, or else to get away from something that is there. The locked door satisfies neither of these concerns.

Furthermore, it is not always a sign of distress. It may be simply looking for exercise, fresh air, or a change of scene, as we all do. Once again, the limiting view of seeing such actions as “symptoms of dementia” pathologizes something we would all feel in that situation. I often ask people to imagine that they were spending several days to weeks in such a place and could not leave by themselves; how long could you last before you started to climb the walls??

This also explains why disguising the door as a bookshelf or other fixture is counterproductive. If there is a need or desire that leads the person to try to leave, this may hide the door, but does nothing to give them what they need. They may stop banging on the locked door, but you have done nothing to help their sense of well-being. You have focused on your tasks and ignored the person. There is no other way you can spin this.

Is it easy to operate without a locked door? No it’s not. It wasn’t easy to untie people back in the 1990s either. It took a lot of investigation, education, and operational shifts to meet people’s needs so that it could be done safely. But as the recent Facebook post by Dr. Bill Thomas shows, it can be done very successfully. And although this particular home had very few residents and enriched staffing ratios, many larger nursing homes and assisted living communities are succeeding without locked doors using the usual staffing compliment.

How do we get there? In Part 2, I’ll give you a road map…

About Dr. Al Power, ChangingAging Contributor:

Al Power is a geriatrician, author, musician, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities. You can follow his speaking schedule at http://www.alpower.net/gallenpower_schedule.htm

Reprinted from: http://changingaging.org/dementia/hidden-restraint-part-1/?utm_source=ChangingAging&utm_campaign=549c889a9e-hidden_restraint&utm_medium=email&utm_term=0_10c6c015a2-549c889a9e-57814809&mc_cid=549c889a9e&mc_eid=819b812096

Sleep Issues and Sundowning Part 2

Coping strategies for sleep issues and sundowning:

Keep the home well lit in the evening. 

Adequate lighting may reduce the agitation that occurs when surroundings are dark or unfamiliar.

Make a comfortable and safe sleep environment.

The person's sleeping area should be at a comfortable temperature. Provide nightlights and other ways to keep the person safe, such as appropriate door and window locks. Door sensors and motion detectors can be used to alert family members when a person is wandering.

Maintain a schedule.

As much as possible, encourage the person with dementia to adhere to a regular routine of meals, waking up and going to bed. This will allow for more restful sleep at night.

Avoid stimulants and big dinners.

Avoid nicotine and alcohol, and restrict sweets and caffeine consumption to the morning hours. Have a large meal at lunch and keep the evening meal simple.

Plan more active days.

A person who rests most of the day is likely to be awake at night. Discourage afternoon napping and plan more challenging activities such as doctor appointments, trips and bathing in the morning or early afternoon. Encourage regular daily exercise, but no later than four hours before bedtime

Try to identify triggers.

Limit environmental distractions particularly during the evening hours (TV, children arriving, chores, loud music, etc.).

Be mindful of your own mental and physical exhaustion.

If you are feeling stressed by the late afternoon, the person may pick up on it and become agitated or confused. Try to get plenty of rest at night so you have more energy during the day.

Share your experience with others.

Join ALZConnected, our online support community and message boards, and share what response strategies have worked for you and get more ideas from other caregivers.

If the person is awake and upset:

• Approach him or her in a calm manner.
• Find out if there is something he or she needs.
• Gently remind him or her of the time.
• Avoid arguing.
• Offer reassurance that everything is all right.
• Don't use physical restraint. If the person needs to pace, allow this to continue under your supervision.

Reprinted from:  http://www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp?WT.mc_id=enews2016_10_28&utm_source=enews-aff-28&utm_medium=email&utm_campaign=enews-2016-10-28

Sleep Issues and Sundowning Part 1

People with Alzheimer's and dementia may have problems sleeping or increases in behavioral problems that begin at dusk and last into the night (known as sundowning).

Causes

Nighttime restlessness doesn't last forever. It typically peaks in the middle stages, and then diminishes as the disease progresses.

Scientists don't completely understand why sleep disturbances occur with Alzheimer's disease and dementia. As with changes in memory and behavior, sleep changes somehow result from the impact of Alzheimer's on the brain.

Some studies indicate as many as 20 percent of persons with Alzheimer's will experience increased confusion, anxiety and agitation beginning late in the day. Others may experience changes in their sleep schedule and restlessness during the night. This disruption in the body's sleep-wake cycle can lead to more behavioral problems.

Factors that may contribute to sundowning and sleep disturbances include:

1. End-of-day exhaustion (both mental and physical)
2. An upset in the "internal body clock," causing a biological mix-up between day and night
3.  Reduced lighting and increased shadows causing people with Alzheimer's to misinterpret what they see, and become confused and afraid
4.  Reactions to nonverbal cues of frustration from caregivers who are exhausted from their day
5. Disorientation due to the inability to separate dreams from reality when sleeping
6. Less need for sleep, which is common among older adults

Talk to a Doctor

Discuss sleep disturbances with the doctor to help identify causes and possible solutions. Physical ailments, such as urinary tract infections or incontinence problems, restless leg syndrome or sleep apnea (an abnormal breathing pattern in which people briefly stop breathing many times a night) can cause or worsen sleep problems. For sleep issues due primarily to Alzheimer's disease, most experts encourage the use of non-drug measures, rather than medication. In some cases when non-drug approaches fail, medication may be prescribed for agitation during the late afternoon and evening hours. Work with the doctor to learn both the risks and benefits of medication before making a decision.

Reprinted from:  http://www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp?WT.mc_id=enews2016_10_28&utm_source=enews-aff-28&utm_medium=email&utm_campaign=enews-2016-10-28

Working With A Geriatric-Care Manager

When you're exploring a foreign country, a guide who knows the terrain well can help immensely. That's just as true when entering the foreign territory of caregiving. Here, a geriatric-care manager can provide invaluable assistance for individuals and families facing challenging care decisions.

Geriatric-Care Managers come from diverse backgrounds, from nursing and social work to gerontology. These professionals can help navigate the tangles of family dynamics, round up medical care and necessary services, keep medical personnel on the same page, and cut through the baffling red tape of private businesses and government bureaucracies.

Some of the tasks geriatric-care managers routinely undertake include:

• Evaluating needs
• Connecting people to helpful services, senior housing, and long-term care facilities
•  Bringing families together to discuss options supportively
• Hiring and monitoring home care personnel
• Communicating with specialists, hospital and home care staff, and family members to coordinate care
• Alerting families to financial, medical, or legal problems and suggesting ways to circumvent difficulties
• Helping with a move to assisted living, a nursing home, an Alzheimer's care unit, or other facilities.

Some geriatric-care specialists focus on assisting older people. Others have expertise coordinating care and services for people of all ages with disabilities or debilitating illnesses.

Although working with a geriatric-care manager may be costly, such expertise can often save money and regrets, especially if you are scrambling to arrange care from afar. The cost of a geriatric-care manager is usually borne by the client or family, rarely by long-term care insurance. If you plan to work with a geriatric-care manager, be sure to get a written agreement outlining the scope of services offered and costs. This document can also help you decide which tasks, if any, might be undertaken by family and friends to save money.

To learn more about Geriatric-Care Managers, or to locate a Geriatric-Care Manager, contact the National Association of Professional Geriatric Care Managers at 520-881-8008 or www.caremanager.org.

For more on developing plans and effective strategies for the hard work of caregiving, buy Caregiver's Handbook, a Special Health Report from Harvard Medical School.

 Republished from: http://www.health.harvard.edu/

Updated: September 26, 2016

Originally published: February 2015

Column: How to fight for yourself at the hospital -
and avoid readmission

By Judith Graham, KAISER HEALTH NEWS I September 01, 2016

Everything initially went well with Barbara Charnes' surgery to fix a troublesome ankle. But after leaving the hospital, the 83-year-old soon found herself in a bad way.

Dazed by a bad response to anesthesia, the Denver resident stopped eating and drinking. Within days, she was dangerously weak, almost entirely immobile and alarmingly apathetic.

“I didn't see a way forward; I thought I was going to die, and I was OK with that,” Charnes remembered, thinking back to that awful time in the spring of 2015.

Her distraught husband didn't know what to do until a longtime friend - a neurologist -insisted that Charnes return to the hospital.

That's the kind of situation medical centers are trying hard to prevent. When hospitals readmit aging patients more often than average, they can face stiff government penalties.

But too often institutions don't take the reality of seniors' lives adequately into account, making it imperative that patients figure out how to advocate for themselves.

“People tell us over and over, ‘I wasn't at all prepared for what happened’ and ‘My needs weren't anticipated,” said Mary Naylor, director of the NewCourtland Center for Transitions and Health at the University of Pennsylvania.

It's a mistake to rely on hospital staff to ensure that things go smoothly; medical centers' interests - maximizing efficiency and payments, opening needed beds, avoiding penalties - are not necessarily your interests, such as recovering as well as possible, remaining independent and easing the burden on caregivers.

Instead, you and a family member, friend or caregiver need to be prepared to ask plenty of questions and push for answers.

Here's what doctors, health policy experts, geriatric care managers, older adults and caregivers recommend.

Start planning now

Planning for a transition home should begin as soon as you're admitted to the hospital, advised Connie McKenzie, who runs Firstat RN Care Management Services in Fort Lauderdale, Fla. You may be too ill to do this, so have someone you trust ask your physician how long you're likely to be hospitalized and whether you'll be sent home or to rehabilitation afterward.

Ask if a physical therapist can evaluate you or your loved one at the hospital. Can you get out of bed by yourself? Walk across the room? Then discuss what difficulties might arise back home. Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? What kind of assistance will you require?

Request a consultation with a nutritionist. What kinds of foods will and won't you be able to eat? Does your diet need to change over the short term, or longer term?

Consider where you'll go next. If you or your loved one is going to need rehabilitation, now is the time to start researching facilities. Ask a hospital social worker for advice or, if you can afford it, hire a geriatric care manager (now called aging life care professionals) to walk you through your options.

Before being discharged

Don't wait to learn about the kind of care that will be required at home. Will a wound need to be dressed? A catheter need tending to? What's the best way to do this? Have a nurse show you, step by step, and then let you practice in front of her - several times, if that's what it takes.

Ann Williams watched a nurse give her 77-year-old mother a shot of Warfarin two years ago after being hospitalized for a dangerous blood clot. But when it was Williams' turn to give the injection on her own, she panicked.

“I'm not a medical professional. I've only given allergy shots to my cats,” she said.  Fortunately, Williams found a good instructional video on the Internet and watched it over and over.

Make sure you ask your doctor to sit down and walk you through what will happen next.  How soon might you or your loved one recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know if a trip back to the hospital is necessary?

If the doctor or a nurse rushes you, don't be afraid to say, "Please slow down and repeat that” or “Can you be more specific?” or “Can you explain that using simple language?” said Dr. Suzanne Mitchell, an assistant professor of family medicine at Boston University's School of Medicine.

Getting ready to leave

Being discharged from a hospital can be overwhelming. Make sure you have someone with you to ask questions, take good notes and stand up for your interests - especially if you feel unprepared to leave the hospital in your current state, said Jullie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over all the medications you'll be taking at home, if you haven't done so already. Bring in a complete list of all the prescriptions and over-the-counter medications you've been taking. You'll want to have your physician or a pharmacist go over the entire list to make sure there aren't duplicates or possibly dangerous interactions.  Some hospitals are filling new prescriptions before patients go home; take advantage of this service if you can. Or get a list of nearby pharmacies that can fill medication orders.

Find out if equipment that's been promised has been delivered. Will there be a hospital bed, a commode or a shower chair at home when you get there? How will you obtain other supplies that might be needed, such as disposable gloves or adult diapers? A useful checklist can be found at Next Step in Care, a program of the United Hospital Fund.

Will home health care nurses be coming to offer a helping hand? If so, has that been scheduled - and when? How often will the nurses come, and for what period of time?  What, exactly, will home health caregivers do and what other kinds of assistance will you need to arrange on your own? What will your insurance pay for?

Be sure to get contact information (phone numbers, cell phone numbers, email addresses) for the doctor who took care of you at the hospital, the person who arranged your discharge, a hospital social worker, the medical supply company and the home health agency. If something goes wrong, you'll want to know who to contact.

Don’t leave without securing a copy of your medical records and asking the hospital to send those records to your primary care doctor.

Back at home

Seeing your primary care doctor within two weeks should be a priority. “Even if a patient seems to be doing really well, having their doctor lay eyes on them is really important,” said Dr. Kerry Hildreth, an assistant professor of geriatrics at the University of Colorado School of Medicine.

When you call for an appointment, make sure you explain that you've just been in the hospital.

 Adjust your expectations. Up to one-third of people over 70 and half of those over 80 leave the hospital with more disabilities than when they arrived. Sometimes, seniors suffer from anxiety and depression after a traumatic illness; sometimes, they'll experience problems with memory and attention. Returning to normal may take time or a new normal may need to be established. A physical or occupational therapist can help, but you may have to ask the hospital or a home health agency to help arrange these visits. Often, they won’t offer.

It took a year for Barbara Charnes to stand up and begin walking after her ankle operation,  which was followed by two unexpected hospitalizations and stints in rehabilitation. For all the physical difficulties, the anguish of feeling like she'd never recover her sense of herself as an independent person was most difficult.

“I felt that my life, as I had known it, had ended," she said, "but gradually I found my way forward.”

‑ Kaiser Health News is 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.orglcolumnists to submit your requests or tips. KHN's coverage of late life and geriatric care is supported by The John A. Hartford Foundation.

Is It Worth Paying An Expert To Help You Navigate
The Health-Care System?

By JOSEPH F. COUGHLIN

There is a new cost in retirement and older age — navigating complexity. While managing finances in retirement can be a challenge — surviving the health-care and home-care system can make the most complex portfolio or financial advisor's Monte Carlo simulation look like a family board game.

When was the last time you had to go to the hospital? Had to organize the complexities of home care for a loved one? How well do you remember the experience? Parts of it are probably something of a blur. We're as helpless we can possibly be when sick, forced to give ourselves over into the hands of others. Sometimes, the best we can manage through the ordeal of illness is to simply try to keep our heads up.

Old age and chronic illness turn that period of vulnerability into a near-constant state of affairs. Often, older adults and their families can do but nothing but hope that they will be treated by the health-care system with their best interests in mind. Sometimes they won't be — not because doctors and nurses and therapists and administrative staff aren't doing the best work they possibly can to help patients, but because a hospital is a massive institution with an endless stream of work flowing through it, not just a place of healing, but an ever-whirring bureaucratic machine. Successfully navigating that complex system is critical to both your or a loved one's health outcomes as it is in managing the costs of health care.

The complexity of the health-care system plus our rapidly aging population has given rise to a new kind of health professional, the geriatric care manager (or GCM), now officially referred to as an Aging Life Care Professional. GCMs are advocates for older adults. They typically don't personally provide care themselves. Instead they collect and present information, help to design a care plan, and navigate the health care system to implement and facilitate that plan on behalf of the family that pays them. They are guides for families who must travel the sometimes-bumpy modern road of aging.

In this sense, a GCM is more like a lawyer or a financial advisor than a doctor. A GCM's value comes primarily from having a large repository of knowledge of a complex system, not necessarily any particular hands-on expertise. Further even from lawyers and financial advisors, there is no defined educational track (yet) for geriatric care management, and a GCM doesn't need a license (yet) to practice. Although experienced nurses appear to be leading the trek in the business of care coordination and management. Geriatric care management is part of the frontier of the burgeoning advanced service economy that is being driven by an aging population.

How much does navigation expertise cost? Effective expert knowledge never comes cheap. A GCM's time runs somewhere in the neighborhood of $125-$200 an hour. If you think of geriatric care management simply as help in picking out Dad's nursing home from a list, that may sound pretty steep, a luxury affordable only to those for whom money is no object. But there could soon come a time that navigating the depths of the health care system without a care manager will seem just as foolhardy as diving into the legal system without a lawyer.

GCMs work toward the holistic well-being of their older adult clients. At the same time, they provide a family with the information to make well-informed decisions about their elder's care. With the staggeringly high costs involved in making such choices, the difference between a well-informed and a clueless decision can be thousands of dollars, not to speak of the well-being of the care recipient.

Now for a one-question health care pop quiz: Do you know what a hospital case manager is? If you or your loved one winds up in a hospital bed, case managers are the ones who decide when you leave and where you'll go to next. They have the power to choose which rehab or assisted-living facility your parent will go to. Their number-one responsibility is to open up beds for the next round of sickly individuals.

They do their best to accommodate the specific needs of patients, but with the workload they face, it's inevitable that their recommendations will not always align with what the patient thinks is best, especially when that patient is an elderly adult with a difficult confluence of issues, preferences and needs.

This is just one example of why GCMs are so important, and perhaps one day will be indispensable. They represent the power of knowledge in a world where we live under the influence of large institutions and complex system that are sometimes too big for us to grasp – just when we may need them the most and ourselves too little for them to notice.

Reprinted from: http://www.marketwatch.com/story/is-it-worth-paying-an-expert-to-help-you-navigate-health-care-in-retirement-2016-08-12
Published: Aug 12, 2016 2:59 p.m. ET

Joseph F. Coughlin, PhD (coughlin@mit.edu) is Director of the Massachusetts Institute of Technology AgeLab. His research addresses how individuals, families, businesses and governments make decisions and plan for the new future of old age. 

The Decline of Tube Feeding for Dementia Patients

By Paula Span
THE NEW OLD AGE AUG. 29, 2016

Reprinted from: http://www.nytimes.com/

Dementia from Parkinson’s disease was taking its toll on Joan Jewell.

She could still respond to music, if a helper wheeled her to the Sunday concert at the Hebrew Rehabilitation Center in Boston, but she spent most of her time in bed. Sometimes she recognized family members; often she didn’t. She couldn’t say more than a few words. She had trouble swallowing.

Last year, her doctor pointed out that she was losing weight and that a feeding tube, surgically inserted through her abdominal wall, might help her regain a few pounds.

Her son James, who served as her surrogate decision maker, responded the way a growing number of family members do: He said no. The proportion of nursing home residents with advanced dementia who receive a feeding tube has dropped more than 50 percent, a new national study has found.

The researchers, analyzing federal nursing home data, reported that in 2000, nearly 12 percent of patients with this terminal condition had feeding tubes inserted within a year of developing eating problems. By 2014, the rate had fallen to less than 6 percent.

“It’s getting much less controversial” to decline a tube and rely on hand feeding, said Dr. Susan Mitchell, a geriatrician and senior scientist at the Harvard-affiliated Hebrew SeniorLife Institute for Aging Research. “This is becoming the prevailing wisdom.”

Dr. Mitchell has had a lot to do with that shift. As a young physician training in nursing homes, she wondered whether feeding tubes actually helped these bedbound elders. At the time, roughly a third of cognitively impaired nursing home residents were tube-fed.

She and a cadre of researchers, primarily from Harvard and Brown universities, have been methodically reporting their findings for 20 years, demonstrating in one article after another the drawbacks of artificial feeding for people in the final stages of dementia.

Change can come slowly in medicine, but it does come. In 2013, the American Geriatrics Society updated its recommendations against feeding tubes for older patients with advanced dementia. The Choosing Wisely campaign, which publishes lists of procedures and tests that patients and families should question, and the Alzheimer’s Association have taken similar positions.

Now, families and physicians seem to have gotten the sorrowful message: Dementia is a terminal disease. Eating and swallowing problems eventually plague almost everyone who has it. Feeding tubes don’t help. In fact, they can make matters worse.

Consider, first, how ill these patients are. Advanced dementia, as Dr. Mitchell and her colleagues define it, brings such profound memory loss that people don’t recognize family. They can’t speak more than five words. They’re incontinent. Sometimes they can’t turn over in bed unaided. “They’re dependent on others for all their day-to-day functions,” Dr. Mitchell said.

Even if an aide or relative patiently feeds them, “they may not know what to do with the food in their mouths.” When they try to swallow, they can aspirate food particles into their lungs and develop pneumonia. “For most people, that’s a very poor quality of life,” Dr. Mitchell said.

Feeding is such a primal activity, the first thing we do when someone is born and one of the last sources of pleasure as death approaches. Naturally, families can find it difficult to refuse a fairly minor surgical procedure that provides nutrition.

But a person no longer able to understand why a gastroenterologist is opening a small hole in her belly may find the insertion of a tube confusing and traumatic. The mush that flows through eliminates the taste of food and the social interaction of hand feeding.

Almost 20 percent of the time, the tube is blocked or dislodged within a year, requiring hospitalization. Dementia patients may also try to pull it out, leading to physical or chemical restraints (read: drugs).

Feeding tubes are also associated with an increased risk of pressure ulcers or bedsores, perhaps because they encourage inactivity or cause diarrhea; the ulcers heal more slowly than in people without tubes.

Perhaps the trade-off would be worth it to some families (since these patients can no longer make decisions themselves) if a feeding tube prolonged life. For others, that would be a good reason to refuse one.

As it turns out, though, feeding tubes don’t keep advanced dementia patients alive longer. Several studies led by Dr. Joan Teno, a geriatrician at the University of Washington who has often collaborated with Dr. Mitchell, show that they make no significant difference. After receiving a feeding tube, patients with advanced dementia lived a median of 165 days, and two-thirds died within a year.

Older adults nearing death still do receive feeding tubes, sometimes because families insist, sometimes because health care providers don’t offer enough information to help them decide. Stark racial differences persist: 3 percent of white nursing home residents with dementia had feeding tubes inserted in 2014, compared with 17.5 percent of black residents.

Feeding tubes remain more popular in certain kinds of nursing homes, too. For-profit nursing homes use them more than nonprofits, Dr. Mitchell’s research has shown, and bigger facilities more than small ones. In New England, fewer than 2 percent of residents are tube-fed. In parts of the South, the rate can run up to 10 times higher.

If you see such practices as indicators of a more aggressive approach to end-of-life care in general (Dr. Mitchell does), then you wonder if health care professionals spend more time talking to white families about their options. You wonder if higher Medicare reimbursement for tube-fed patients (and the labor costs of hand feeding) make nursing homes more apt to recommend tubes.

But more and more, you encounter people like the Jewells.

Joan Jewell had worked as a nurse in upstate New York and had cared for her husband as he died of Alzheimer’s disease. James Jewell, whom she encouraged to study medicine, is an internist at the nursing home where she lived.

Years before, when his mother could still contemplate such matters, “we had the what-if discussions,” Dr. Jewell told me.

Mrs. Jewell was clear. “She subscribed to the idea that quality of life was more important than being kept alive at all costs,” her son said. “And being able to do things for herself was part of her definition of quality of life.”

Despite her weight loss, then, he declined medical intervention. In February, Mrs. Jewell began refusing food altogether and soon slipped into a coma. Dr. Jewell and his children were with her when she died, at 89.

No Spouse, No Kids, No Caregiver: How to Prepare to Age Alone

A growing population of ‘elder orphans’ lack a built-in support system. What to do if you become one. 

By Anna Medaris Miller | Staff Writer Oct. 26, 2015, at 12:54 p.m.
Reprinted from www.health.usnews.com

When Carol Marak was in her 30s, she asked herself whose life she wanted: her brother's – the life of a successful and well-traveled businessman – or his wife's – the life of a woman whose career better accommodated raising three children.

The answer was a no-brainer: "My brother was in a position I wanted," says Marak, now a 64-year-old editor at SeniorCare.com who lives in Waco, Texas. Although she had been married and divorced earlier in life, at that point she had no kids and "made a very conscious decision" to keep it that way, she says.

Plenty of Marak's peers did the same thing. According to a 2012 study in The Gerontologist, about one-third of 45- to 63-year-olds are single, most of whom never married or are divorced. That's a whopping 50 percent increase since 1980, the study found. What's more, about 15 percent of 40- to 44-year-old women had no children in 2012 – up from about 10 percent in 1980, U.S. Census data shows. "My career was No. 1 in my life," says Marak, who worked in the technology industry for years.

But today, Marak and her single, childless contemporaries are facing a repercussion of their decision that never crossed their minds as 30-somethings: "How in the world will we take care of ourselves?" she asks.

Dr. Maria Torroella Carney, chief of geriatrics and palliative medicine at North Shore-LIJ Health System in New York, is asking the same thing. In research presented this year at The American Geriatric Society's annual meeting, Carney and her colleagues found that nearly one-quarter of Americans over age 65 are or may become physically or socially isolated and lack someone like a family member to care for them. Carney calls them "elder orphans."

"The risk of potentially finding yourself without a support system – because the majority of care provided as we get older is provided by family – may be increasing," she says.

The consequences are profound. According to Carney's work, older adults who consider themselves lonely are more likely to have trouble completing daily tasks, experience cognitive decline, develop coronary heart disease and even die. Those who are socially isolated are also at risk for medical complications, mental illness, mobility issues and health care access problems.

"You could be at a hospital setting at a time of crisis and could delay your treatment or care, and your wishes may not be respected [if you can't communicate them]," says Carney, also an associate professor at Hofstra North Shore-LIJ School of Medicine.

Take "Mr. HB," a 76-year-old New York man described in Carney's research as "a prototypical elder orphan." After attempting suicide, he arrived at a hospital with cuts on his wrist, bed sores, dehydration, malnutrition and depression. He lived alone and hadn't been in contact with any relatives in over a year. His treatment was complicated, the researchers report, in part because he was too delirious to make clear decisions or understand his options. He wound up at a nursing facility with plans to eventually be placed in long-term care.

But growing older without kids or a partner doesn't mean you're doomed – just as aging with kids and a partner doesn't mean all's clear. "We're all at risk for becoming isolated and becoming elder orphans," Carney says. You could outlive your spouse or even your children, find yourself living far from your family or wind up in the caretaker role yourself if a family member gets sick. Keep in mind that 69 percent of Americans will need long-term care, even though only 37 percent think they will, according to SeniorCare.com.

Plus, there's no way around the natural physical and mental declines that come with age. "Everybody has to prepare to live as independently as possible," Carney says. Here's how:

1. Speak up.

Marak wishes she had talked more with her friends and colleagues about her decision not to become a mom early on. That may have given her a jump-start on anticipating various problems and developing solutions to growing older while childless. She advises younger generations to  discuss their options openly with friends – married and single, men and women – before making a firm decision.

"We discuss our psychological issues with professionals. We discuss our money strategies with financial experts," Marak says. "Why not talk openly about family concerns and what it means to have or not have children? So many of us go into it with blinders on." 

2. Act early.
How early you start planning for your future health depends partly on your current condition – and your genes, says Bert Rahl, director of mental health services at the Benjamin Rose Institute on Aging. "If your ancestry is that people die early, you have to plan sooner and faster," he says.

But whether you come from a family of supercentenarians or people who have shorter life spans, it's never too soon​ to save for long-term care, whether it's by investing in a ​home, putting aside a stash for medical emergencies or "whatever you can do to have a nest egg," Marak says. "Life is serious, especially when you get old. Don't get to [a point]​ ​when you're 60 and now you're having to scramble to catch up."

Still not motivated? "Everybody wants some control in [their] life," Rahl says. "If you don't plan, what you're choosing to do is cede that control to somebody else – and the likelihood that they're going to have your best interests at heart is a losing proposition."

3. Make new friends and keep the old.​
Your social connections can help with practical health care needs, like driving you to the doctor when you're unable. But they also do something powerful: keep you alive, research suggests. In a 2012 study of over 2,100 adults age 50 and older, researchers found that the loneliest older adults were nearly twice as likely to die within six years than the least lonely – regardless of their health behaviors or social status.

Connections can also help ward off depression, which affects nearly 20 percent of the 65-and-older population, according the National Alliance on Mental Illness. "One of the things that keeps people from being depressed is to be connected," Rahl says. "The more social activities you have, the more friends, the more things you can do to keep your body and mind active – that's the best protection you have against mental illness."

4. Appoint a proxy.
Who is your most trusted friend or relative? "Identify somebody to help you if you're in a time of crisis, and revisit that periodically over your life," Carney suggests. Make sure that person knows your Social Security number, where you keep your insurance card, which medications you take – "the whole list of things somebody needs to know if they're going to help you," advises Dr. Robert Kane​, director of the University of Minnesota’s Center on Aging.

Before you start losing any cognitive capacities, consider designating that person as your durable power of attorney for health care, or ​the person who makes health care decisions for you when you're no longer able.

If no one comes to mind, hire an attorney who specializes in elder care law by asking around for recommendations or searching online​ for highly rated professionals. Unlike your friends, they have a license to defend and are well-versed in elder care issues. Most of the time, Rahl's found, "they're trustworthy and will do a good job for you."

5. Consider moving.

Marak is on a mission: "to create my life where I'm not transportation-dependent," she says. She's looking to move to a​ more walkable city, perhaps a college town where she's surrounded by young people and can stay engaged with activities like mentoring. She also hopes her future community is filled with other like-minded older adults who can look out for one another. "I want to … set up my life where I'm not living alone and isolated," she says.

Adjusting your living situation so that you can stay connected to others and get to, say, the grocery store or doctor's office is the right idea,​ says Carney, who cares for a group of nuns who live communally and has seen other adults create communities that act like "surrogate families," she says. "Think: Where do you want to live? What's most easy? How do you access things? How do you have a support system?"

6. Live well.
Marak is lucky: She's always loved eating healthy foods and walking – two ways to stay as healthy as possible at all ages. "Some of the foods that we eat are really, really bad for the body," she says. "That's one of the major causes of chronic conditions – and not exercising."

Keeping your brain sharp is also critical if you want to be able to make informed decisions about your health care, Rahl says. He suggests doing activities that challenge you – math problems if numbers trip you up, or crossword puzzles if words aren't your forte. "The old adage, 'If you don't use it, you lose it,' is 100 percent correct," he says.

5 out of 11 Signs Your Parent May Be Ready for Assisted Living
You can gather valuable information by looking for these clues

7. Around-the-House Signs
Look around the living areas. Sometimes the most obvious sign is hard to see because we become so used to it.

Look for:

Lots of clutter  An inability to throw anything away may be a sign of a neurological or physical issue. Obviously it’s more worrisome in a neatnik than in a chronic slob. Papers or pet toys all over the floor represent a tripping hazard.

Signs of lax housekeeping  Spills that haven’t been cleaned up are a common sign of dementia — the person lacks the follow-through to tidy. Keep an eye out for cobwebs, bathroom mold, thick dust or other signs of slackness. Physical limitations can mean your loved one needs housekeeping help or a living situation where this is taken care of for him or her.

Bathroom grime and clutter  A common scenario: Your loved one makes an effort to tidy up living areas but overlooks the bathroom. Or the guest bath is clean, but not the one the person uses all the time (the one off a bedroom, for example). Here you may see a truer picture of how your loved one is keeping up.

8. Pet-Care and Plant-Care Signs
Be sure to check out how the other living things in the home are faring. An ability to take care of pets and plants goes along with self-care.

Look for:

Plants that are dying, dead, or just gone  Most of us have seen plants go brown sometimes. Keep an eye out for chronic neglect, especially in a former plant-lover’s home.

Animals that don’t seem well tended   Common problems: dogs with long nails, cat litter boxes that haven’t been changed lately or dead fish in the fish tank. Poor pet grooming, overfeeding and underfeeding are other red flags.

9. Home-Maintenance Signs
Walk around the yard. Yard maintenance — or lack of it — can yield clues that your loved one isn’t faring as well at home alone anymore.

Look for:

Signs of neglect   Look for discolored siding or ceilings that might indicate a leak, gutters choked with leaves, broken windows or fences and dirty windows.

Newspapers in the bushes  Are papers being delivered but ignored? Sometimes people pick up those they can see on a driveway, but not ones that go off into the yard.

Mail piled up in the mailbox  Go out and check — it’s an indication that your loved one doesn’t even retrieve it regularly.

10. Signs from Friends and Others
Get the input of others who know your loved one in order to collect a fuller picture of reality. Gently probing about what others think isn’t nosy; you’re being loving, concerned, and proactive.

Look for:

Input from those in your loved one’s circle  Talk to old friends and close relatives to get their sense of how the person is faring. Listen for stories that hint that the person doesn’t get out much (“She doesn’t come over anymore.” “She quit book club.”). Pay attention to comments that indicate ongoing concerns (“Has he had that heart test yet?” “We were worried the day the ambulance came.”).

Medical insight  With appropriate permission, your loved one’s primary doctor may share your concerns about his or her patient’s safety at home — or may be able to alleviate those concerns or suggest where to get a home assessment.

A second opinion  A social worker or professional geriatric care manager visits older adults’ homes and does informal evaluations. While your loved one may initially resist the notion of a “total stranger” checking on them, try pitching it as a professional (and neutral) second opinion, or ask the doctor to “prescribe” it. Some people wind up sharing doubts or vulnerabilities with a sympathetic, experienced stranger that they’re loathe to admit to their own children or family.

11. Caregivers’ Signs
Finally, realize that some of the information you collect is intangible —it has to do with feelings and emotions, and the stress levels of everyone involved.

Look for:

How you’re doing  While this decision to remain in the home is not primarily about you — the son, daughter, grandchild, caregiver — your own exhaustion can be a good gauge of a decline in older adults’ ability to care for themselves. Keeping someone at home can require lots of hands-on support or care coordination, and this is time-consuming. If your loved one’s need for care is just plain wearing you out or if a spouse or children are feeling the collective strain of your caregiving activities, these are major signs that it’s time to start looking at other options.

Your loved one’s emotional state  Safety is crucial, of course, but so is emotional well-being. If someone living alone is riddled with anxieties or increasingly lonely, then that may tip the scales toward a move not solely based on health and safety reasons.

If your loved one has a full life, a close neighborhood and community connections and seems to be thriving, it’s worth exploring as many in-home care options as possible before raising stress levels by pressing a move from a beloved home.

If, on the other hand, your loved one is showing signs that living alone is a strain, it may be time for a talk. Broach the subject of where to live in a neutral way and you may find that your loved one harbors the same fears for current and future safety and security that you do. Find out what your loved one fears most about moving and about staying before launching into your own worries and what you think ought to be done.

Copyright Caring.com, 2013

Reprinted from: http://www.nextavenue.org/11-signs-might-time-assisted-living/ Article: 11 Signs Your Parent May Be Ready for Assisted Living  by Paula Spencer Scott; July 11, 2016; published on Caring.com

This is the second of 2 segments posted

Reprinted from: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

FRAYING AT THE EDGES Part 6
By N. R. KLEINFIELD

SHE WAS FOLDED into a chair in the living room, working her way through a cup of coffee. She sat arched toward her husband, the two of them talking through the afternoon’s changing light.

The apartment was a pin-neat one-bedroom, its windows offering sweet views that went a long ways. The black leather couch and rug were new. Her idea. She didn’t want Mr. Taylor stuck replacing tattered trappings once she could no longer pitch in. Everything with her was do it now.

Ms. Taylor told him: “I find when you can’t remember something but you feel something about it, you take your mind out of it and let your feelings get to it. If you get frustrated and angry, that’s the worst thing because you have this emotional interference. At Memory Works, they said a couple of weeks ago if it sounds like something or feels like something, say it. I was trying to find a word and I thought it felt like hamster, and I said it.”

“Makes sense,” Mr. Taylor said.

It happened that her days spanned strings of triumphs and losses, the ratio vacillating. “I totally forgot the gutter man was coming to Connecticut,” she said. “I wrote it down. But I forget to keep looking. I arranged for a man to come to replace a broken window and I was out. He was supposed to be there in five minutes. I was 20 minutes away. Fortunately he was late.”

Their toaster ovens differed in their two homes. The Connecticut one had no timer to shut it off. She would leave things in it. Once a bagel caught fire. They bought a model with a timer.

“It’s not just the two being different from each other,” she said. “It’s each one being different every day. Operating a car, finding the buttons, gets me mixed up. I can’t figure out how to turn on the air-conditioner. I’ll put my coffee down and go to the bathroom and come out and make coffee all over again. And then wonder, Where’s my mug?”

Applying her makeup, she would overlook an ingredient — the lipstick, say, or the rouge. There is a sequence, she said. She had problems with sequences.

Sometimes during glum moments — when she fumbled a task or lost something — she got down on herself. She would tell her husband, “We need to see a movie.”

Mr. Taylor was always the voluminous talker in the marriage, Ms. Taylor much more abstinent when it came to small talk. Now she spoke to everyone and struck up conversations with strangers, a new aspect of her personality. “I think I just unconsciously started doing it, and the response has been good,” she said.

Her husband looked at her appraisingly and said: “The governor is gone. You’re always coming home and telling me about all these people you met at the photo shop or something.”

“I’m not indiscreet,” she said, eyes widened. “I haven’t brought home any cats.”

“No, but you’re less inhibited than you used to be,” he said. “You do what you want to do, you say what you want to say. You’re not concerned about hurting other people’s feelings.”

“Oh gosh, I haven’t done that, have I?”

“Not that I know of.”

“Oh good.”

Mr. Taylor said: “You know your days are finite. And you’ve found interacting with strangers much more pleasurable than you thought possible.”

All in all, they were feeling upbeat.

He said: “I know this sounds really strange, but I don’t think Geri and I have had a better period in our marriage than right now. We’re much more dedicated to be with each other. The disease has brought that. Yes, it’s short-lived and there’s a sadness to that, but we’re not focused on that.”

She said, “We feel fortunate in the misfortune of this time.”

Darkness had come on. The city glimmered outside. She untwined herself from the chair and trundled into the kitchen to retrieve a plaque she wanted to show. Months ago, she had been fishing around an arts and crafts store, when her eye fastened on it. It read, “When I let go of what I am, I become what I might be.”

She had to have it. The disease had her wrestling with her self-identity as pieces of her disappeared. What kind of person was she if she couldn’t get names straight or make the oven work, forgot where she put that new blouse, forgot she even had a new blouse?

The plaque spoke to her, convincing her that she could build something else inside her, that she could unfasten herself from the past and not have it dominate the present. She said: “If you continue to think of who you were right up until the time you got Alzheimer’s, you will experience frustration, decline, failure, a lesser self. Not good company. I sometimes can’t complete a thought. I could feel bad about myself. If I have to measure up to what I was before I became this, I can’t. But if you let that go, then you are still becoming something. And it’s not necessarily a diminution of yourself. You must realize, it ain’t over.”

IF you have enjoyed these first 6 excerpts  from Fraying at the Edges, please read the entire piece at: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

6 out of 11 Signs Your Parent May Be Ready for Assisted Living
You can gather valuable information by looking for these clues

The decision to help an aging adult move out of a current home is a complex one — both emotionally and practically. Above all, you want your mother or father or another loved one to be safe and well. How can you feel more confident about whether circumstances suggest that he or she should no longer be living alone?

Finding lots of mail scattered around raises concern about how bills, insurance and other matters are being managed.

Although every situation is different, looking at the following 11 signs will give you valuable information to help make the decision:

1. Big-Picture Signs
Keep the big red flags in mind. Certain situations make it more obvious that it’s wise to start thinking about alternate living arrangements.

Look for:
Recent accidents or close calls  Did your loved one take a fall, have a medical scare or get in a fender bender (or worse)? Who responded and how long did it take? Accidents do happen, but as people get older, the odds rise of them happening again.

A slow recovery  How did the person weather the most recent illness (for example, a flu or bad cold)? Was he or she able and willing to seek medical care when needed, or did last winter’s cold develop into untreated bronchitis?

A chronic health condition that’s worsening  Progressive problems such as COPD, dementia and congestive heart failure can decline gradually or precipitously, but either way, their presence means your loved one will increasingly need help.

Increasing difficulty managing the activities of daily living (ADLs) and instrumental activities of daily living (IADLs)  ADLs and IADLs are the skills needed to live independently — dressing, shopping, cooking, doing laundry, managing medications and so on. Doctors, social workers and other geriatric experts evaluate them as part of a functional assessment, which is one way to get an expert’s view of the situation. Difficulties with ADLs and IADLs can sometimes be remedied by bringing in more in-home help.

2. Up-Close Signs

Give your loved one a big hug. Clues aren’t always visible from a distance; especially when you don’t see the person every day, you might learn more through touch.

Look for:

Noticeable weight loss  Does the person feel thinner? Are clothes loose or has he added notches to his belt? Many conditions, from depression to cancer, can cause weight loss. A person who is having trouble getting out to shop or remembering how to cook (or to eat) can lose weight; check the fridge and watch meal-prep skills.

Seeming more frail  Do you feel anything “different” about the person’s strength and stature when you hug? Can your loved one rise easily from a chair? Does she or he seem unsteady or unable to balance? Compare these observations to the last time you were together.

Noticeable weight gain  Common causes include an injury slowing the person down, diabetes and dementia (when someone doesn’t remember eating, he or she may indulge in meals and snacks all day long). Someone with money troubles may choose fewer fresh foods and more packaged goods or dried pasta and bread.

Strange body odor  Unfortunately, a close hug can also reveal changes in personal hygiene habits. Causes range from memory trouble to depression to other physical ailments.

Changes in appearance  Does the person’s hair and makeup look all right? Are clothes clean? Someone known for crisply ironed shirts who’s now in a stained sweatshirt may lack the dexterity for buttons or may have lost the strength for managing an ironing board and iron. A formerly clean-shaven man with an unkempt beard may be forgetting to shave (or forgetting how to shave).

3. Social Signs
Think realistically about the person’s social connections. Social circles tend to shrink with age, which can have health and safety implications.

Look for:

Signs of active friendships  Does your loved one still get together for lunches or outings with friends or visits with neighbors or participate in religious activities or other group events? Does he or she talk about others or keep a calendar of appointments? Lack of companionship is associated with depression and heart problems in older adults. If friends have died or moved away, moving to a place where other people are around could be lifesaving.

Signs that your loved one has cut back on activities and interests  Is a hobby area abandoned? Has a club membership been given up? A library card gone unused? There are many reasons people cut back, but dropping out of everything and showing interest in almost nothing is a red flag for depression.

Days spent without leaving the house This sometimes happens because the person can no longer drive or is afraid to take public transportation alone and lacks a companion to come along. While many older adults fear being “locked away” in a retirement home, many such facilities offer regular outings that may keep them more mobile and active, not less.

Someone who checks in on a regular basis  If not you or another family member, who does this? Is your loved one willing to consider a home-safety alarm system, a personal alarm system or a daily calling service?

A plan for a worst-case scenario  If there’s a fire, earthquake, flood or other disaster, is someone on standby to assist? Does your loved one understand the plan?

4. Money Signs
Riffle through the mail. Your loved one’s mail can offer an often-overlooked clue to how he or she is managing money, a common early warning sign of cognitive trouble.

Look for:

Snowdrifts of mail in various places  Finding lots of mail scattered around raises concern about how bills, insurance and other matters are being managed. (Piles of mail are also a potential tripping hazard.)

Unopened personal mail  Everybody skips junk mail, but few of us can ignore a good old-fashioned, hand-addressed letter.

Unopened bills  This can indicate that your loved one is having difficulty managing finances — one of the most common first signs of dementia.

Letters from banks, creditors or insurers  Routine business letters aren’t worrisome. But it’s alarming if letters are referring to overdue payments, overdrawn balances, recent accidents or other concerning events.

Thank-you messages from charities  Older adults are often vulnerable to scammers. Even those who have always been fiscally prudent are vulnerable if they’re having trouble with thinking skills (a common sign of Alzheimer’s disease). Some so-called charities are bogus; other legitimate charities hit up givers over and over, and your loved one may not remember having donating the first time.

Lots of crisp, unread magazines  The person may unknowingly have repeat-renewal subscriptions he or she doesn’t need.

5. Driving Signs
Take a drive — with your loved one behind the wheel, if he or she is still driving. Living independently in our culture often depends on the ability to drive, or the arrangement of alternate transportation options.

Look for:

Nicks or dents on the car Notice the car body as you get in and out. Damage marks can be signs of careless or poor driving.

Whether the person promptly fastens his or her seatbelt  Even people with mild dementia usually follow the rote basics of driving. It’s worrisome if he or she is forgetting this step.

Tension, preoccupation or being easily distracted  The person may be unwilling to engage in conversation while driving. He or she may avoid certain routes, highway driving, or driving at night and in rain — a safe kind of self-policing but also signals of changing ability.

Signs of dangerous driving  People whose driving ability is impaired are more likely to tailgate, drift from their lane, go below the speed limit, react slowly to lights or other cars and mix up gas and brake pedals.

Warning lights  Check out the dashboard as you ride along. Does the car have sufficient oil, gas, antifreeze and windshield-wiper fluid?

6. Kitchen Signs
Go through the kitchen, from fridge to cupboards to oven. Because people spend so much time in this room, you can learn a lot.

Look for:

Stale or expired foods  We all buy more than we need. Look for signs that food is not only old but that this is unnoticed — mold, sour milk that’s still used or expiration dates well past due, for example.

Multiples of the same item Ten bottles of ketchup? More cereal than can be eaten in a year? Multiples often reveal that the shopper can’t remember from one store trip to the next what’s in stock at home.

A freezer full of TV dinners  They might have been bought for convenience, but frozen dinners tend not to make for a healthy diet. If there’s not much fresh food in the house (because it’s too hard to for the person to procure or cook), your loved one might be ready to have help with meal prep or delivery services.

Broken appliances  Check them all: microwave, coffeemaker, toaster, washer, and dryer — any device you know your loved one uses (or used to use) routinely.

Signs of fire  Are stove knobs charred? Pot bottoms singed badly (or thrown out)? Do any potholders have burned edges? Also look for a discharged fire extinguisher, smoke detectors that have been disassembled or boxes of baking soda near the stove. Accidents happen; ask for the story behind what you see. Accidental fires are a common home danger for older adults.

Increased use of takeout or simpler cooking  A change in physical or mental abilities might explain a downshift to simpler recipes or food choices.

Copyright Caring.com, 2013

Reprinted from: http://www.nextavenue.org/11-signs-might-time-assisted-living/ Article: 11 Signs Your Parent May Be Ready for Assisted Living  by Paula Spencer Scott; July 11, 2016; published on Caring.com

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