Employed family caregivers, despite their workplace obligations, perform many of the tasks that health care professionals do—a range of medical/nursing tasks including medication management, wound care, using meters and monitors, and more — according to a new report released by the AARP Public Policy Institute and the United Hospital Fund.
The new report is the first to document that those who have the responsibilities of full- or part-time employment take on this high level of support in similar proportions.
In a two-part series in its Boomers section, The New York Times is offering advice from Deborah Drelich, a geriatric care social worker and founder of a resource website, NY Eldercare Consultants, about important considerations for families contemplating assisted living arrangements for older family members.
The series includes questions and answers from readers and links to important eldercare resources.
“Dr. Angelo Volandes is making a film that he believes will change the way you die,” the article begins. Read more at http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/
The New York Times (April 4, 2013) carried a front page article, “Dementia Study Predicts A Surge In Costs and Cases”.
Referencing a RAND study reported in the New England Journal of Medicine, the article went on to detail the staggering statistics that are now becoming evident as Boomers live longer. We are unprepared as a society to deal with the rise on the number of cases of Dementia.
The study results showed that 15% of people over the age of 71, about 3.8 million people, have dementia. By 2040, that 3.8 million number is expected to be 9.1 million.
“I don’t know of any other disease predicting such a huge increase,” said Dr. Richard J. Hodes, director of the National Institute of Aging, which financed the study. And as we have the baby boomer group maturing, there are going to be more older people with fewer children to be informal caregivers for them, which is going to intensify the problem even more.” This statement rarely gets discussed. Who will care for us? With less children, who are often living in other cities, will many of us face our final years living in physical and psychological isolation cared for by strangers in a “facility”?
The article outlines the economic impact of this Dementia wave.
What also needs to be addressed is the psycho-spiritual toll that impacts family members. Any one of us who has had to care for a loved one dealing with Dementia, including Alzheimer’s, knows that over and above the financial strain is the often overwhelming psychological stress that impact us. This also is rooted in a real fear that “this may be me in a few years”.
Slowly, as our generation ages and as we care for parents (and even spouses) who are afflicted with Dementia, the society is getting the message that it must pay attention to this reality. With no “cure”, we need to being to look at how a community can be supportive and caring. Faith communities as well are starting to become more aware of this issue. We have no choice since families are increasingly seeking advice and support from clergy.
Education about the challenges of Dementia needs to be increased as well as funding into research. Attention must be paid to this issue as, if the studies are correct, too many of us will be impacted. There is much more to come on this.
Rabbi Richard F Address, D.Min.
Editor’s Note: This contribution is by Allan Brindell.
I’ll never forget the day that my journey into the area of “care giving” began. Life was good! Everything was good for me; good for the family and things were going the way I wanted them to be going.
It started on a Friday night that I will never forget. It was June 30th, 1989. I was busy at work, finishing things up and getting to relocate to California. I had wanted to move back there for such a long time and finally had my chance. I was to move within the next week or so.
Family was good on the Friday in June my mom had retired that day after working for the same company for about 19 years. So my mom and dad decided to go out and celebrate my mom’s retirement. They left and within maybe a half hour my phone rings. It was a phone call I will never forget for it had changed everyone’s life forever. It was my mom on the phone, dad just had a stroke at the restaurant.
I rushed out of the house frantic. And as I was driving, I know what restaurant my mom said they were at but I drew a blank. So I pulled over not being able to think straight. Where are they I’m blacking out. Then I saw an ambulance rushed by with the lights going. My instinct said follow that ambulance. My luck must have been with me for that was the ambulance going to where my dad was.
I remember seeing my dad in the back of the ambulance and then proceeded to meet them at the hospital. The emotions for everyone was running high that night. After hours at the hospital my mom and I returned home. As we were standing in the kitchen all she said to me was “What are you going to do?” [meaning about the move that was coming up] My response was basically I don’t know I don’t have a clue. Eventually I was able to delay the transfer for a short period of time. When I did leave to move on that Sunday morning I walked out of the house in tears not being able to look my mom in the face. I drove off not being able to look back. I made the 3,000 mile trip to California in 6 days alone. By the time I got there on that Friday my decision was I can’t do this. So 2 days later I turned around to make the same 3,000 mile journey to be at home where I belonged in the first place. I have no regrets on the return. After all isn’t that family is supposed to do.
Thus began the journey of my mom and I being care givers for my NOW disabled dad. Trying to deal with a different man from what we knew all those years. He was usually a quiet man; a family man. But looking back I now saw a different man. He was now dependent on US for his care. He was different physically and emotionally. He was paralyzed on his left side meaning that the stroke occurred on the right side of his brain. So physically he couldn’t do like he did before. And emotionally he was a changed man. He would be sitting at home at times in tears. I would look at my mom and we would just glance at each other like “Why is he crying?” My mom would shrug her shoulders and just try to say I don’t know why he is crying. His long memory for whatever reason was intact. I would hear the same stories that I always had and heard a million times as a child. But his short term memory was another issue. The same questions over and over again and usually minutes apart.. As time went on some sort of dementia set in. He would go thru periods of outbursts for no reason at all. He became difficult to handle. He would hallucinate.
In the interim, after my dad had his stroke in June of 1989, my mom took ill. It was the end of 1990 I guess. My mom had several bouts of cancer – lymphoma. But this time was different. The doctors were having trouble getting the cancer under control. My mom progressively was getting sicker and sicker as time went by.
So from 1990 on I became the sole care giver for both parents. I would be at work and would get an urgent call. Come home you have to get me to the hospital. Mom didn’t want to call the ambulance, she wanted me there. So I would rush out of work. I can’t tell you how many times I had to leave work because of the family emergency. My mom eventually passed away in June of 1992.
So I was still taking care of my dad at this point. But it was tough trying to deal with 2 ailing parents at once. I didn’t know which way I was turning. It was after my mom passed away that my dad began with the hallucinations; the outbursts. He would become more and more difficult to handle. I couldn’t talk to him. I couldn’t reason with him.
There was one time my dad was in the hospital for something and in the middle of the night I got a call from the hospital. Come down, we cant control him. We need to medicate him. So I would go running at 1 or 2 o’clock in the morning. Once I had to help the doctors control him to medicate him and my dad was so mad because of what was going on all he was able to say was that he had no son I was dead to him. Again outbursts.
And at times seeing him medicated in the hospital and being placed in the psychiatric ward. He didn’t have a clue as to what was going on.
I can’t tell you how many times I would sit back and look at my dad and think, “This isn’t my dad.” This isn’t the dad that I grew up with. He was a changed man for the worse.
It was ever so difficult being a care giver. For after the time that my mom had passed away, I began the worst part of my own journey as “patient.” I started to have one surgery after another. And while I was at home trying to recover on my own from surgery at the time, I was also playing the role of care giver. I had to wear 2 different hats at the same time. And whatever was going on in my own life physically I couldn’t talk to my dad about it. I couldn’t get the emotional support that I needed as well. He wouldn’t understand and was always afraid of dumping on him more then he could have handled emotionally.
So what did I go thru personally as a caregiver? I went thru periods of anger; frustration lonliness; despair. I had no where to turn to. I had to do it alone. I needed to have some sense of control over what was going on, but yet looking back I was probably, no I can say I WAS out of control. I was out control emotionally spiritually and physically. i was your classic example of what a “burned out” person probably was. I couldn’t deal with my dads emotional and physical needs and I certainly wasn’t handling any of my own needs. While I tried to find time for myself, mini vacations. While I may have been away from home physically, mentally I was always at home. Always wanting to make sure that he my dad was being taken care of. I was a lost soul.
And while my dad has been gone going on 10 years now I am still trying to deal with things. Things that were ignored or thinking of the things that I should have done differently while my dad was still alive. Angry for what went on that maybe I could have done things differently or handled things better. But when you get caught up in a situation — a catch 22 — you start to spin in circles and can’t get out of where you are at.
I feel that thru the care giving process I have walked a million miles. Wishing ever so much that I could turn the clock back. Finding a better way of doing things or a better support system. But I realized that I didn’t have a support system. Doing it ALONE you find yourself in that dark lonely place wondering if anyone ever will understand what you have gone thru.
So when I hear or see another person in a care giving position that is living the same lfie that I did ever so many years ago, I tend to relive those moments. You never truly forget the role of “care giver” for the impact it has on you, only you can tell that story in hopes that someone else doesn’t have to have the same experience.
Now I understand the importance of being a “care giver” and I certainly undertand the emotional; spiritual and physical impact it has on you. Whoever is a care giver all I can say is “if possible don’t do it alone or think you can do it alone” & “wherever possible get the support that you do need in such a time!!!!”
by Charles Ornstein
ProPublica, Feb. 28, 2013, 8:59 a.m.
This story was co-published with The Washington Post.
My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we’d gathered to discuss: When was it time to let Mom die?
It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma. Three days earlier she’d been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped. She required CPR for nine minutes. Even before I flew into town, a ventilator was breathing for her, and intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.
Doctors couldn’t tell us exactly what had gone wrong, but the prognosis was grim, and they suggested that we consider removing her from the breathing machine. And so, that January evening, we drove to a nearby restaurant in suburban Detroit for an inevitable family meeting.
My father and sister looked to me for my thoughts. In our family, after all, I’m the go-to guy for all things medical. I’ve been a health-care reporter for 15 years: at the Dallas Morning News, the Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America’s complex health-care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments.
In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health-care system.
I’ve long observed, and sometimes chronicled, the nasty policy battles surrounding end-of-life care. And like many health journalists, I rolled my eyes when I heard the phrase “death panels” used to describe a 2009 congressional proposal that would have allowed Medicare to reimburse physicians who provided counseling to patients about living wills and advance directives. The frenzy, whipped up by conservative politicians and talk show hosts, forced the authors of the Affordable Care Act to strip out that provision before the bill became law.
Politics aside, I’ve always thought that the high cost of end-of-life care is an issue worthy of discussion. About a quarter of Medicare payments are spent in the last year of life, according to recent estimates. And the degree of care provided to patients in that last year — how many doctors they see, the number of intensive-care hospitalizations — varies dramatically across states and even within states, according to the authoritative Dartmouth Atlas.
Studies show that this care is often futile. It doesn’t always prolong lives, and it doesn’t always reflect what patients want.
In an article I wrote for the Los Angeles Times in 2005, I quoted a doctor saying: “There’s always one more treatment, there’s always one more, ‘Why don’t we try that?’ … But we have to realize what the goals of that patient are, which is not to be in an intensive-care unit attached to tubes with no chance of really recovering.”
That made a lot of sense at the time. But did it apply to my mom?
We knew her end-of-life wishes: She had told my dad that she didn’t want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I’d never realized how little the costs to the broader health-care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.
As my mom lay in the ICU, there was no question that her brain function was worrisome. In the hours after she was revived, she had convulsions, known as myoclonus, which can happen if the brain lacks oxygen. After that, she lay still. When the neurologist pricked her with a safety pin, she didn’t respond. When he touched her corneas, they didn’t reflexively move.
I began checking the medical literature, much like I do as a reporter. I didn’t find anything encouraging. Studies show that after 72 hours in a coma caused by a lack of oxygen, a patient’s odds of recovery are slim to none. I asked my writing partner in New York to do additional research. She, too, found nothing that would offer much hope.
But couldn’t my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup. She had Parkinson’s disease for a decade, and in 2010 she suffered a closed head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?
Truth be told, I was already somewhat skeptical about physician predictions. Just last summer, my dad’s heart stopped, and it took more than 10 minutes of CPR to revive him. Doctors and nurses said a full neurological recovery was unlikely. They asked about his end-of-life choices. Mom and I stayed up late talking about life without him and discussing the logistics of his funeral. But despite it all, he rebounded. He was home within weeks, back to his old self. I came away appreciative of the power of modern medicine but questioning why everyone had been so confident that he would die.
Also weighing on me was another story I wrote for the Los Angeles Times, about a patient who had wrongly been declared brain-dead by two doctors. The patient’s family was being urged to discontinue life support and allow an organ-donation team to come in. But a nursing supervisor’s examination found that the 47-year-old man displayed a strong gag-and-cough reflex and slightly moved his head, all inconsistent with brain death. A neurosurgeon confirmed her findings.
No one was suggesting that my mom was brain-dead, but the medical assessments offered no hint of encouragement. What if they were off-base, too?
Over dinner at the Chinese restaurant, we made a pact: We wouldn’t rush to a decision. We would seek an additional medical opinion. But if the tests looked bad — I would ask to read the actual clinical reports — we would discontinue aggressive care.
A neurologist recommended by a family acquaintance came in the next morning. After conducting a thorough exam, this doctor wasn’t optimistic, either, but she said two additional tests could be done if we still had doubts.
If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.
On Friday morning, the final test came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.
We decided it was time to honor my mom’s wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.
I don’t think anyone can ever feel comfortable about such a decision, and being a health reporter compounded my doubts.
I was fairly confident that we did what my mom would have wanted. But a week later, when I was back in New York and had some emotional distance, I wondered how our thinking and behavior squared with what I’d written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.
Curious how experts would view it, I called Elliott S. Fisher. I’ve long respected Fisher, a professor of medicine at Dartmouth and a leader of the Dartmouth Atlas. The Atlas was the first to identify McAllen, Texas, subject of a memorable 2009 piece in the New Yorker by Atul Gawande, for its seemingly out-of-control Medicare spending.
I asked Fisher: Did he consider what my family did a waste of money?
No, he said. And he wouldn’t have found fault with us if we decided to keep my mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.
“You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about. I feel very strongly about that.”
Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren’t known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.
“I don’t think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy,” he said, “when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient.”
I left the conversation agreeing with Fisher’s reasoning but believing that it’s much harder in practice than it is in theory. You can know somebody’s wishes and still be confused about the appropriate thing to do.
The past few weeks have been the most difficult of my life. I hope what I learned will make me a better, more compassionate journalist. Most of all, I will always remember that behind the debate about costs and end-of-life care, there are real families struggling with real decisions.
Have you had to make end-of-life care decisions? Share your experience in our comments below.
The public radio program RadioLab, heard locally on WHYY-FM in the Philadelphia market, offers a series of podcast “articles.” One recent article, “The Bitter End,” describes the kinds of end-of-life care people ask from their doctors, and candid feedback from doctors about what kind of care they want for themselves.
You can read the background information about this program here, and listen to the podcast in the player below.
Editor’s Note: JSA welcomes a new contributor, Shelly Christensen. Shelly Christensen is a Baby Boomer parent of an adult child with a disability whose mom is a vital 83 years old, and whose brother is a cancer survivor. She is the founder and president of Inclusion Innovations. Her book, Jewish Community Guide to Inclusion of People with Disabilities is widely used by sacred communities worldwide and she is a frequent keynote speaker on inclusion in sacred communities and parenting a child with special needs.
We know what the start of the secular new year brings with it. Resolutions. Did you vow to lose weight, exercise more, call your mother more often, spend more time with your kids?
How is that going for you? Read more
The New York Times “New Old Age” blog reports on a Senate report that highlights several trends related to care for people with Alzheimer’s disease in five countries. The US does not come out on top. Read the Times blog post here.