healthcare

At the End of Life So Many Questions

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At the End of Life: So Many Questions
by Alice Fisher, M.A., M.S.W
November 1, 2015

A couple of weeks ago, the front page story in the Sunday NY Times was about George Bell who was found dead in his apartment after the many days that he lay there alone. He was a hoarder and was found decomposing among his many possessions and in filth.

The horror of the situation is experienced from a distance for most of us. Surely that could never happen to anyone in MY family. And, yet, it did.

My 92 year old mother-in-law had been living independently in Florida, and for the past couple of years her advancing frailty became increasingly noticeable to us. The last time we visited we implored her to think about moving up to New York where most of her family is located. Met with her usual fierce resistance, we let it go one more time.

A couple of weeks ago we received a call from mom. She had fallen in her own home and lay on the floor for hours before anyone found her. Ironically, she was found by a messenger delivering a walker she had ordered. As a result of the fall, she had ripped the very thin layer of skin that covered her legs. There was a lot of blood, and in his wisdom the messenger called for an ambulance. When the hospital finished checking her out and bandaged her legs, they told her she could go home. She asked them to call her neighbor who picked her up and brought her home. Having had no response when this neighbor asked her to phone us in the past, this time her neighbor insisted that mom call us in her presence.

Mom had no advocate at the hospital, which I assume is the reason they took no tests and no notice of her deteriorating condition…not even a call to her doctor. There was no follow up and no instructions about how to care for her wounds, which I subsequently discovered had to be redressed daily. There were no arrangements made for a visiting nurse to attend to this, although it had to be obvious that this was not something she could do on her own.

I was soon to find out that this was just one of many times she had fallen in the past months. Each time her neighbor implored her to call her children, and each time mom promised she would. When she would see her neighbor, mom would assure her that she had phoned her sons. She never called us. And when we called her, she told us that everything was good. Between her children, grandchildren, and great grand children, she received calls almost daily. None of us suspected that anything was wrong. She never asked for help.

This day, however, her astute neighbor gave her no choice but to make that call. As mom began relating the story, still insisting that she was okay, we noticed instantly that her speech was slurred. On arrival at her home the next evening, the front door was unlocked, which was completely out of character, and I was instantly assaulted by the odor of urine and feces the moment I stepped into the entryway.

To my complete shock, I found a wasted away 85 pound person sitting in filth in a filthy house. She bore only a slight resemblance to the woman I’ve known for over 50 years. Under normal circumstances, she would have been mortified to be found in this condition. She was coherent but foggy, and she could not remember much of how she got this way. She just wanted to be left alone to sleep.

Of all the possible scenarios the family talked about before I left, this was not one we expected to find. I knew instantly that I had to get her back to New York with me. I told her that my mission was to take her home to her family. Her immediate response was, “No you’re not!” She could no longer walk unaided; and even with the walker it was most difficult. There was not enough strength in her arms to enable her to pull herself up to use the walker. She could no longer bathe or toilet herself. Wearing pull up diapers, the effort to get to the bathroom was too much for her, so she just sat in the same diaper all day.

How can this have happened? She could not have found herself in this condition overnight. Where were her neighbors? Where were her friends? (Her closest friend said to me, “I’ve suggested many times that she get a walker, and your mother-in-law’s response was ‘Don’t EVER say that word to me again!’”) Where was her doctor who she had seen only a week earlier? (He told her that her feet and hands were swollen because she probably had too much salt in her diet and to go home and rest with her feet up.) What about the hospital where she was taken after this last fall?* They took no tests and would not consider admitting her? The biggest question is “Why didn’t she ask for help?”

She was certainly complicit in her own demise, having ignored the advice of friends and neighbors, never asking her family for help, not eating, and accepting diagnoses from incompetent doctors and hospital staff without question. Was her denial so deep, or did she stop eating and not ask for help purposely? I don’t think we will ever know.

What if she never called us? What if the man delivering the walker hadn’t found her? She was so precipitously hanging on to life I have no doubt that if we hadn’t received the phone call and acted so quickly, she would have been found in the same condition as Mr. Bell…D.O.A.

One lesson from this tragic story is that a phone call is not a good enough way to check on an elderly person, particularly when that person is frail.

What about the bigger picture? Why didn’t she ask for help? Why didn’t her friends or neighbors contact us? We are a society that has moved so far toward valuing independence and individuality, we forget or don’t want to admit that nobody gets through life successfully without any help. Add to this the fear of being politically incorrect if we infringe on an individual’s privacy and independence by sending for help, even if it means protecting a life.

Whether help comes from mentors or teachers, from parents, friends, family, or neighbors, or from the government in the form of “entitlements”, everyone needs help at one time or another. And it is not only those who are ill, dying, or living in poverty who need help. Everyone needs help to survive in our society. We cannot all pull ourselves up by our own bootstraps. We seem to have collective amnesia when it comes to community caring.

The experience of bathing and diapering a frail elderly person, as I had to do for mom, sends a very clear message that a frail elderly person can require no less help than a newborn baby. We accept the premise that newborns need help coming into this world, while we often don’t acknowledge the help many of us need as we near our time to leave this world. I have to question the role of ageism in this distorted view of independence. Why don’t we have any system of national long term care?

Words in our lexicon that have taken on dubious meaning, include; interdependence, help, individuality, interference, old, frail, weak, and even tired. Asking for help needs to be considered a strength, not a weakness. Making it to one’s eighth or ninth decade needs to be considered an achievement, not a failure.

We need to confront age discrimination in all its forms; by the healthcare system, by our legislators, by the work force, by the media, by our own families, as well as the internalized ageism adopted by the elderly members of our society. All of these forms of ageism came into play for my mother-in-law.

Mom is now in New York with her family nearby. After a lengthy hospital stay, she is now in a long term care facility where she is receiving the 24/7 care she needs as she nears the end of her life. The family expects no miracles, we are just happy that she can leave the world with the dignity she deserves.

*Upon my arrival in Florida and with the help of extended family, I did take her back to the same hospital where she was taken when she fell a couple of days earlier. Interestingly, the medical staff now took all kinds of tests, showed us how to re-dress her wounded legs with instructions to perform this task daily. We did not have to ask for the tests or medical attention. They did what they should have done when she was brought in two days earlier. This time mom was not alone. We were there as her advocates and witnesses. I did ask them to admit her…pleaded is a more accurate description. The hospital refused. In New York, not only was she admitted to the hospital, she was found to have a major infection that was spreading throughout her body. It would seem that none of the medical personnel in Florida, not her doctor, nor the hospital staff, deemed this test necessary.

 

A Message from Alice Fisher

You may know me as the Director of Community Outreach for NYS Senator Liz Krueger, or you may have worked with me in the Senator’s office on issues that affect our senior constituents on quality of life or housing issues, or you may have attended one of our popular Roundtables for Boomers & Seniors. What you may not know is that for the past year and a half I have been working on my own initiative, The Radical Age Movement, outside of Liz’s office and with her full support.

WHAT IS THE RADICAL AGE MOVEMENT:

The Radical Age Movement is a grassroots nationwide effort that challenges traditional notions of aging.  Our long term goal is to create new social visions that will inspire and support people to grow and participate actively throughout their entire lives. No age-segregation or pitting generation against generation—we want a society that works for us all. Our short term goal is to bring awareness to the incessant ageism that permeates our youth-oriented society.

The Radical Age Movement was born out of my deep interest in longevity and its impact on society. One thing that became clear to me is that our longer life span has not added years onto the end of our lives but has opened a new stage of life for people between the ages of 60 and 80.  Once part of our nation’s cohort of seniors, these people are not ready to leave the workforce, play golf or bingo, nor be segregated from the intergenerational world around them. We are eager to keep on growing and learning, as well as mentoring and sharing our wealth of life experience. A big concern for this cohort is how we will be able to financially take care of our needs in this longer lifetime when the workforce has turned its back on us. We are a new cohort in the life span, so new that nobody knows what to call us. We don’t even know what to call ourselves. Sometimes we are the “old boomers” or the “young seniors” or the “leading edge”. Whatever we call ourselves, we are here to stay; and we need to raise our voices to make ourselves and our needs known.

The other driving factor for many of us is the recent caregiving experiences we have had or are having with helping our own parents navigate the end of some very long lives. Not liking the ageist attitudes that we have to battle to be sure that they receive the respect and care that they need, not to mention the financial resources that have gone beyond their own means, to help guide them to the end of life with the dignity and respect they deserve.

WHAT THE RADICAL AGE MOVEMENT HAS BEEN DOING:

This past fall, The Radical Age Movement (RA) went public with the launch of our website, www.theradicalagemovement.com. RA has had a busy 2015. We held two public events, one on January 13th, “Liberating the Power of Age, attended by over 100 people at the Ethical Culture Society of NY; and on February 21st  60 people attended a four hour “Age Café” workshop on ageism.

At both of our recent events, people shared their own stories of the difficulties they have confronted, or the humiliation and anger they have felt, in the face of ageism in the workplace, in healthcare, in the media, and often within their own families.

CONSCIOUSNESS RAISING AND BUILDING THE MOVEMENT:

Consciousness Raising (CR) is the method that is central to building our movement. This model of organizing–built around consciousness-raising groups where the ‘personal is political’– follows on the powerful work of the civil rights’, women’s, and LGBT movements, where small groups formed to discuss, understand, and acknowledge the mix of external and internal dynamics that contribute to a group’s marginalization and oppression. As those group members met and learned from each other over a number of months, they then came together to create a common campaign that united them all in joint action. This mix of personal development and political reform made lasting change as the movements grew from small numbers to a strong force capable of creating lasting change.

We have had many requests from people around NYC to join a CR group, and RA has decided to serve as a clearing house of sorts to help individuals either start their own or find and join a CR group that is forming.

For anyone who is interested, just email us at confrontingageism@gmail.com . Please be sure to put “ consciousness raising ” or “ CR” in t he subject of your email and include your home address . We are trying our best to connect people to groups that are in their geographic location. We, the steering committee of RA, have been participating in our own CR group for the past year. We have two additional groups forming now, one on the upper west side and one on the east side of Manhattan. We have people expressing interest from Lower Manhattan, Brooklyn, Queens, and as far away as Poughkeepsie. If your group is newly forming, one of RA’s steering committee members will be happy to attend your first meeting to help you get started. Our guide, “How to Start an Ageing Consciousness Raising Group” should be up on our website, www.theradicalagemovement.com, within the next two weeks.  Groups that want to get started before that  will be provided with advance copies of the guide.

MOVING FORWARD:

While these CR meetings are going on throughout March, April, and into May, the RA steering committee will be reviewing what larger campaign issue we wish to take on as our first initiative. A small sample of some of the suggestions that we are considering are: a campaign against an ageist ad campaign or other ageist me- dia representation of older adult; a politician who uses ageist language; a campaign to get news outlets to al- ter their language when identifying an older person, and many others. We will then bring all our CR groups together to choose such a campaign and map out next steps.

In short, we are doing just what the civil, women and gay rights’ movements did many years ago, using their lessons to guide and inspire us as we build our own movement here in the 21st century. This is an exciting prospect, built on lessons of the past and small steps by each of us in our own way. We know that some of you will become one of those emerging leaders who takes this step by hosting an evening CR session. And, we look forward to having the rest of you join us in this effort. Through such commitment, history is made.

March 9, 2015

What The Radical Age Movement Is and What It’s Not

My background in community organizing informed the founding The Radical Age Movement.  Community Organizers look at the world through a holistic lens.  We see the connections between systemic and personal issues.  While others are busy feeding the hungry, community organizers look to see WHY there are so many hungry Americans.  In today’s world, we need both kinds of activists.  We need people on the ground to give immediate aid to those in need, and we need others to try to find the cause of the need and to, hopefully, eradicate it.

Here’s a parable, author unknown, with a little adaptation by me that many of us who do community work are familiar with.

THE STORY OF THE RIVER

Once upon a time there was a small village on the edge of a river. The people there were all social work case workers, with the exception of one lone community organizer. Life in the village was good. One day a villager noticed a baby floating down the river. The villager quickly swam out to save the baby from drowning. The next day this same villager noticed two babies in the river. He called for help, and both babies were rescued from the swift waters. And the following day four babies were seen caught in the turbulent current. And then eight, then more, and still more!

The villagers organized themselves quickly, setting up watchtowers and training teams of swimmers who could resist the swift waters and rescue babies. Rescue squads were soon working 24 hours a day. And each day the number of helpless babies floating down the river increased. The villagers organized themselves efficiently. The rescue squads were now snatching many children each day. While not all the babies, now very numerous, could be saved, the villagers felt they were doing well to save as many as they could each day. Indeed, the village priest blessed them in their good work. And life in the village continued on that basis.

One day, however, the community organizer raised the question, “But where are all these babies coming from? Don’t you think we should go up river and find out where they are coming from?”  And so, the community organizer put together a team to head upstream to find out why these babies are being thrown into the river in the first place!”

We know that there are so many issues that affect older adults in our country; i.e., social security, Medicare, affordable housing, food insecurity, just to name a few.  We also know that there are many wonderful organizations which are addressing these specific issues.  We are not one of those organizations.

As The Radical Age Movement, we are the team that is heading upstream to find out WHY there are so many issues facing older adults in our society.

We are determined to get at the root causes of why older adults are not receiving the services they need…why their quality of life is constantly undermined by our government, our medical establishment, our workforce, the media, and in some cases, even by our own families.  We believe that the underlying cause for all these troubling concerns is AGEISM.

Simply put, ageism is prejudice  expressed toward anyone because of their age.  Although we can often recognize prejudice against young people, in this movement we are looking at prejudice expressed against older people.  Because we have all grown up in this extremely youth-oriented society, most of us harbor our own ageist tendencies.  Yet, while we fight racism, sexism, classism, etc., there is very little advocacy to address this prejudice.  When people are ageist, they are setting themselves up for prejudice against their own future selves.

Ultimately, we need new social visions that will inspire and support people to grow and participate actively throughout their entire lives.  No age segregation or pitting generation against generation—we want a society that works for all. We can’t leave it to experts to tell us how to age ‘well’ or ‘successfully’ or to an aging industrial complex that sees older adults as a dependent group or growing market of consumers.

To accomplish this, we must first expose the ageism that lies beneath and allows the exploitation of and prejudice against people merely because of their age.  This is what The Radical Age Movement is about.

 

 

 

 

 

Ageism in Medicine: Do seniors get the same medical care as younger patients?

By Joanna Leefer, Senior Care Advisor

Older people are often treated with less urgency than younger patients. This “ageist” attitude is being recognized as a form of discrimination similar to sexism and racism. Here are some ways to recognize this behavior and how you can change it.

An older man walked into his doctor’s office. “Doc,” he said, “my right knee is killing me. The pain is shooting through my leg like a knife.” “Sir, you are 86 years old; you must accept the fact that you will experience pain. It’s part of the aging process.” The older man looked the doctor in the eye and responded, “I don’t understand Doctor, my left knee is 86 years old too and it has never bothered me. “

This is a common conversation between physicians and their older patients far too often. Many physicians dismiss senior’s complaints as a “normal” part of aging and feel they don’t need to treat them with the same urgency as they would a younger person’s complaints.

Studies show that many physicians hold preconceived stereotypical opinions of the elderly. They assume aches and pains are a normal part of aging and do not treat it with seriousness or compassion. Other studies indicate that doctors often spend less time with older people, minimize their difficulties and often do not take care of their condition as intently as they do younger patients because they are “getting on in years” and will die soon anyway.

Another generalization commonly held by medical professionals about older patients is that they all should be treated the same. This is despite the fact that the term “seniors” spans from the age of 55 to over 90 years old. There is little acceptance that a 55-year old person is different than a person who is 90+. There is also little regard that many seniors are more fit than younger counterparts; that many of them still are physically active, and participate in strenuous activities such as swimming, running, and tennis. This misconception often results in seniors not being considered for new and innovative treatments or for organ transplants even if they are healthier than younger candidates.

Other common evidence of this dismissive attitude can be seen in how often geriatric patients are not offered early appoints because their needs are not considered urgent or as important as a younger person’s. Other studies show that seniors are given less time with their doctors and the physician spends less time exploring reasons for ailments because they are old and are expected to tolerate their age. Treating patients based on their age means the doctor might miss a significant, treatable situation.

Another example of doctor’s attitudes towards seniors is evident when an older patient is accompanied by an adult child. In such cases, the doctor often address his questions and comments to the adult child rather than to the patient and refer to the patient in the third person rather than addressing him directly. This behavior negates the patient and relegates him to an inferior role, almost like a person returning to childhood.

Fortunately, some doctors are beginning to question this behavior. Dr. Robert Butler, a pioneer in geriatric care and the first Director of the National Institute on Aging coined the term ageism to describe the systematic stereotyping of people over a certain age. In his book, Why Survive Being Old in America, published in 1969, Dr. Butler compared this behavior to attitudes such as racism and sexism. He offered examples of how older people are routinely undervalued in all areas of life and compares this treatment to discrimination against older people.

Since Dr. Butler’s writings more and more doctors are reconsidering their treatment toward senior patients. Some hospitals such as New York Presbyterian are beginning to offer training to doctors to make them more aware of these attitudes and how to work against them.

One big step is the acknowledgement that seniors are not one homogenous group. A 55-year-old person is quite different than one who is 95 years old and should be treated accordingly. Medical facilities are now dividing the geriatric population into three broad age categories, the young old, the middle old, and the old old. Each grouping has its own distinct medical and social needs and treatment. Younger seniors in the 50 to 65 year old category are healthier and living longer than ever before. Older patients, on the other hand, often have psychological issues that impact them and should not be disregarded. Some medical facilities are teaching doctors to become more sensitive to major issues impacting seniors including personal losses, such as loss of job status, loss of friends, family members and spouses, social isolation, and sensory losses such as hearing loss, loss of eye sight, and cognitive loss.

Doctors are being taught to take into considerations some of these sensory losses by sitting closer to patients, talking to them slowly and clearly without shouting, making sure the room is well lit and written information is presented in large print. Finally doctors are becoming more aware of the richness of the experience they can gain from listening to their older patients. Doctors are learning to understand that older patients are entitled to the same respect and treatment as younger patients.

There is much that we as family members of seniors or seniors ourselves can do to make sure geriatric patients get the proper medical attention

1.Demand the doctor gives each patient as much time as necessary. Don’t let the doctor rush you.

2. Ask plenty of questions; make sure all your concerns are discussed thoroughly

3. Don’t settle for platitudes; insist the doctor take your complaint seriously. Ask yourself, would he give the same answer to a younger patient?

4. Make sure you are seen in a timely manner. If the office won’t give you a convenient appointment, consider going someplace else.

5. Insist the doctor talk directly to you. Do not let yourself be addressed in the third person. You might be older but your mind is still good.

Ageist attitudes would be more understandable in the early 20th century when the average life expectancy was 61 years old. Now that a person can live into her 90’s or even 100, this attitude about an individual’s care seems ludicrous.

as seen in the Community Newspaper Group, June 2-6, 2014
http://joannaleefer.com/ageism-in-medicine/

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