My father had a stroke in 2011, experienced a sharp decline in 2013, and passed away July 23, 2015. His death certificate lists Alzheimer's Disease (AD) as a cause of death, although there was no brain autopsy to make that determination.
I am not an officer or director of any organization focused on matters concerning AD. While taking care of my father, I did found a company to promote a product I, and other caregivers, found useful. The website is still available at http://www.247caregivingproducts.com.
My father, A.W. Blumrosen, the Thomas A. Cowan Distinguished Professor of Law, taught at Rutgers School of Law -- Newark for 46 years, 1955-2002.
He met and married my mother, R.G. Blumrosen, when they were students at the University of Michigan School of Law. She was one of five women students in their class, one of ten women students in the law school.
They graduated in 1953 and practiced law in the same office where S. Blumrosen, my father's father, had practiced. He graduated from the University of Michigan Law School in 1913.
Following is a brief chronology to inform you about his life and work. Since my father and mother worked on many projects together, I will use their first names (Al and/or Ruth) for clarity:
1960 (approx.), Al was granted tenure and became a full professor.
1961, Al was a visiting professor at LSU, in Baton Rouge, Louisiana.
1963 (approx.), at the request of S. Reitman, a Newark attorney appointed to the NJ Civil Rights Commission, Al's class studied and made recommendations concerning that agency.
1965, June (approx.), Al and Ruth were each early hires at the Equal Employment Opportunity Commission (EEOC). Eventually, Al became the EEOC's first Director of Federal State Relations and first Chief of Conciliations, for purposes of conciliating cases in which the Commission found reasonable cause to believe several employers in Alabama had violated Title VII, he was based in the Federal Building in Birmingham; Ruth was Acting Chief for Advice and Analysis and Acting Director of Compliance at the EEOC, and became Lecturer of Law and Assistant to the Dean of Howard University School of Law, C. Ferguson.
1968, Al was Special Attorney in the Civil Rights Division of the U.S. Department of Justice.
1969-71, Al was a Consultant to Assistant Secretary of Labor for Employment Standards, A. Fletcher, where he advised on regulations and procedures including OFCCP-Order No. 4 and a national program concerning the construction trades, the Philadelphia Plan.
1970, Al and Ruth were each a participant in the first International Labor Organization (ILO) conference behind the Iron Curtain, the 5th International Conference of Labor Law and Social Security. By that time, the ILO was part of the United Nations.
1970, Al published "Administrative Creativity: The First Year of the Equal Employment Opportunity Commission" in the George Washington Law Review.
1971, Al published Black Employment and the Law (Rutgers University Press).
1972-73, Al was Acting Director of the Michigan Department of Civil Rights.
1972, Al published "Strangers in Paradise: Griggs v. Duke Power Co. and the Concept of Employment Discrimination" in the Michigan Law Review. This article was cited in a U.S. Supreme Court decision handed down June 25, 2015, Texas Department of Housing and Community Affairs, et al. v. Inclusive Communities Project, Inc., et al (https://www.supremecourt.gov/opinions/14pdf/13-1371_m64o.pdf).
1977-79, Al was Consultant to EEOC Chair E.H. Norton in connection with EEOC Reorganization, Uniform Guidelines on Employee Selection Procedures, Affirmative Action Guidelines, and procedures for processing individual and systemic cases. He resigned so Ruth could be Consultant to EEOC Chair E.H. Norton on issues raised by workforce reductions and gender-based income inequality.
At that time, Al and Ruth started thinking about why R.H. Lee and T. Jefferson would want to revolt against Great Britain and began research on a book that was published 25 years later, Slave Nation: How Slavery United the Colonies and Sparked the American Revolution (Sourcebooks, 2005). The first chapter is about J. Somerset and the Somerset Case.
1979-1982, Al was Of Counsel to the New York law firm, Kaye, Scholer, Fierman, Hays & Handler advising employers on equal opportunity matters; 1980-81, Ruth was Consultant on Equal Employment Opportunity, here at the Department of Health and Human Services.
1982, Al and Ruth were Counsel to mainly white female employees challenging a discriminatory layoff in Chrapliwy v. Uniroyal, 670 F.2d 760 (7th Cir. 1982) cert. denied, 103 S. Ct.2428 (1983).
1983, Al wrote "Six Conditions for Meaningful Self-Regulation" which won the Ross Essay Prize awarded by the American Bar Association. Later, Al learned that the judge of the competition was Judge Higginbotham.
1985, Al was Counsel to the NAACP in NAACP v. Meese, 615 F. Supp. 200 (D.D.C) seeking an injunction against rescission of consent decrees involving affirmative action.
1986, Al published "Some Thoughts on Affirmative Action Here and in India: Galanter's Competing Equalities," Industrial Relations Law Journal, U.C. Berkeley Law School.
1989, Al was Counsel to the NAACP in Wards Cove Packing Co. v. Atonio, 109 S.Ct. 2115 (D.D.C) concerning the interpretation of Title VII of the Civil Rights Act.
1989, Al and Ruth were Counsel to the mainly white male employees seeking equal pay in Klask v. Northwest Airlines, 57 FEP Cases 1147, 1152 (D. Minn. 1989, 91).
1993, Al and Ruth were each Fulbright Scholars at Stellenbosch University in South Africa where they examined the usefulness of the U.S. experience with equal employment opportunity law in the post-apartheid period and, with L. Human, published "An Affirmative Action Statute for Employment and Contracting: Some Proposals" in the South Africa industrial Law Journal (1994).
1995, Al was Advisor to the U.S. Department of Labor, which resulted in "How the Courts are Handling Reverse Discrimination Claims," Bureau of National Affairs, Daily Labor Report, March 23.
1995, Al and Ruth were each Resident Scholars at the Rockefeller Institute Conference and Study Center in Bellagio, Italy.
1998: Al and Ruth published "Downsizing and Employee Rights," 50 Rutgers Law Review 943.
1998-2004: Al and Ruth, with the benefit of a Ford Foundation grant administered by Rutgers, published "The Realities of Intentional Job Discrimination in Metropolitan America, 1999." 40 state reports and a national report compare, with statistical precision, the standard deviations of the workforce of each employer-establishment, by occupation, with the workforces of similar establishments in the same Metropolitan Statistical Area and industry, by occupation. Statisticians D. and S. Dale worked on the reports. Available at http://www.eeo1.com. My brother, Alex, and I worked with Al and Ruth on this project.
2004, Ruth died suddenly and unexpectedly in an auto accident.
2005, Slave Nation: How Slavery United the Colonies and Sparked the American Revolution was published by Sourcebooks. Alex and I worked with Al and Ruth on this project.
2005, Al and Alex published "Using Statistics to Measure Diversity Compliance by Establishing Deviations from Labor Market Practices -- A Model for Effective and Economic Regulation in the Global Computer Age."
2011, Al and I published "Restoring the Congressional Duty to Declare War," Rutgers Law Review.
2011, Al had a stroke which left him with "expressive aphasia," which meant that, as intellectual and articulate as he used to be, with great dedication to speech, physical and occupational therapy, he was unable to find all the words he wanted, when he wanted to use them. He could take in information through his senses and process that new information with his mind, but he could no longer express himself as fluently as before.
Even so, we began work on our next project, a book about E. Coles. We wrote about Coles in one of the last chapters of Slave Nation, because it is noted by many historians that he challenged then former-President Jefferson to free their slaves together. Jefferson refused. Coles proceeded with his plan of emancipation and may have been the first plantation owner to free his slaves while he could have profited from them. We were into the fourth volume of R. Caro's biography of LBJ when my father was no longer able to concentrate enough on the material to communicate, in any way, about it.
That project was shelved and I focused on being my father's 24/7 caregiver. I got to be so good at taking vitals, giving meds, and keeping my patient safe, germ and rash-free that the home health care professionals suggested I challenge the CNA exam.
Since my father passed away, I have been administering his estate and developing a plan to outline our book about E. Coles. Recently, I found your website (https://aspe.hhs.gov/national-alzheimers-project-act) and found out about your quarterly meetings.
I am grateful that our nation is taking a comprehensive interest in all of the elements concerning issues related to Alzheimer's Disease and I am especially appreciative of your concern for the needs of caregivers, whether professional or family-volunteer.
Thank you for letting me "pay it forward" by sharing the following top-of-mind comments. Perhaps they will be useful to you and others who are working to efficiently marshal and focus our limited resources on matters concerning AD.
My father chose to "age-in-place" and asked me to take care of him at home in Bonita Springs, Lee County, Florida, as long as I was able. I agreed.
Home Health Care
The greatest help to me, and to my father, were the home health-care workers -- nurses, CNAs and therapists (speech, occupational, and physical).
Under Medicare, they were available only after a hospital stay of at least three days, and only as long as there was opportunity for improvement. I hope this national effort will spend some time and expend some resources:
- Figuring out ways to provide the connection and services of home health care -- without the pre-requisite of a hospital stay and, in appropriate situations, without the requirement that there be room for improvement, perhaps with the removal of speech, physical and occupational therapy and the retention of nursing and CNA services, and
- Improving and standardizing the best practices of professionals providing home health care. In our experience, some excelled -- both at the technical aspects of their job and also in approaching people with Alzheimer's Disease -- and some did not do their jobs well. Medicare pays the same to the home health care agencies (I think) but it matters who comes to the house. Therapists, CNAs and nurses are not, yet, fungible in the basic performance of their duties.
During my father's last days, many people spoke with us -- hospice, doctors, etc. No one said anything about brain autopsies.
I would like to suggest that someone specific in the health care setting be tasked with informing the health care proxy about the availability of brain autopsies.
I have since learned that Medicare considers the payment for brain autopsies to be included in the cost of a hospital stay, and some hospitals disagree. I hope this has been, or will be, clarified.
I know, for my own peace of mind, I would have liked a definitive diagnosis of AD, which -- at that time -- could only be done with a brain autopsy that revealed whether there were plaques and tangles, or there was something else that mimicked the symptoms of AD.
Based on conversations with Dr. F. Schaerf in Ft. Myers, principal investigator and founder of the Neuropsychiatric Research Center of Southwest Florida, I assume that it would be helpful to the medical community to have many more brain autopsies that could provide more data-points about the plaque and tangles, amyloid and tau proteins, in the brain.
I would suggest some consideration of ways to ease the flow of information to health care proxies about brain autopsies, as well as clarification to hospitals that they are expected to perform brain autopsies at no additional cost to the family, the caregiver or the taxpayers.
Perhaps hospitals could be required to submit a small portion of their per diem to a national trust which would save and combine such deposits for the designated purpose of performing brain autopsies. This way, the full cost of a brain autopsy would not have to be borne by the last hospital where a decedent happened to be an in-patient. The cost would be spread over every hospital that charged Medicare for treating a patient with AD.
Shortly before my father passed away, I learned there is research being done on the use of sonogram technology to "cure" Alzheimers. See, for example, http://www.sciencealert.com/new-alzheimer-s-treatment-fully-restores-memory-function.
As you know, sonograms and ultra-sound have been approved for other uses in the United States, for many years and, I have been told, that the technology could be used for this purpose if a doctor was courageous enough. Perhaps such courage could be strengthened with laws protecting doctors from liability for the creative use of current technology (1) with patients who are certified to be in the last stages of life and (2) with the health proxy's consent.
My father could not be more dead than he is now, if a doctor had tried a new use of an approved technology on him. And, he would have made one last contribution to society. I am proud of him for the work he did while active, for his courage in fighting to re-learn skills we took for granted like talking, and for his fight for life. He was reaching for his last gasp of air in the hands of an ambulance attendant and did not go gently into the night. It would have extended my reasons to be proud if we could have furthered Alzheimer's research by trying non-invasive non-pharmaceutical ways to deal with his challenges and our situation.
Alternatives or Supplements to Pharmaceuticals
One time my father was in a small well-respected rehabilitation facility after a hospitalization in Naples, Florida. Rehab, there, is short-term and intense. It requires a certain amount of concentration during the day. My father would get anxious at night and receive medication to calm him. But, that resulted in his being sleepy the next day, which interfered with his therapies.
I suggested that the facility try what they talk about in their beautiful four-color brochure and take an alternative holistic approach by using aromatherapy. When I arrived for visiting hours that evening, they had sprayed his pillow with lavender. He slept well that night, needed less attention from the nursing staff, and was more awake the next day.
I wonder whether non-pharmaceutical solutions (which, I imagine are typically lower cost) are receiving attention equal to pharmaceutical solutions.
After the experience with my advocacy for my father, one of the head nurses talked with me. There was an article in the April 2014 AARP Bulletin by M.D. Rosen, "Am I Losing My Mind: Conditions that Mimic Dementia," that says over 100 disorders can mimic AD. The article highlights:
- Normal pressure encephalitis (NPE),
- Depression or another mental health disorder,
- Urinary tract infection (UTI), and
The nurse explained that there can be difficulties in determining exactly what is producing the symptoms of Alzheimer's.
Perhaps there could be further study and the development of programming, best practices and information for the public, including untrained and unlicensed family caregivers, about ways to filter out symptoms that mimic AD.
I showed the article to my father's neurologist, a dedicated doctor. He set up an appointment with someone who gives tests. I, as someone who was not going to be the subject of the test and was the subject's health proxy, inquired about the nature of the test. The tester was opaque; she would tell me nothing more than the doctor would be able to make a definitive diagnosis of AD, which every article I read said was impossible without a brain autopsy.
I suggest that "experts" be trained and required to explain what they are about to do, in plain language that the health care proxy can understand, so the health care proxy can make an informed decision.
The nurse at the rehab center also told me she had heard on Facebook about an "Alzheimer's Village." I found there is one. It is called Hogewey, a small village in Weesp, the Netherlands, where every resident has severe dementia (https://www.youtube.com/watch?v=LwiOBlyWpko). Hogewey is specially built, with the intention of maintaining strong connections with the interests and thought patterns of people who show symptoms of AD, while providing a safe and supportive place to live.
It is called a village because it has different areas for different interests. Recognizing that people develop circles of friends with similar interests, Hogewey connects someone with a strong interest in sports, for example, with other people who are interested in sports.
In our experience, living in a place that was familiar to my father and focusing on the work of writing about E. Coles probably kept my father engaged much longer than if he were in an institution with few touchstones to his personal experience and memories, and little intellectual stimulation.
I saw support for this when my father was in another well-respected rehab facility. They sat people with similar interests or backgrounds at the same table for dinner. Our dinner companions were more engaged in conversation and aware of their circumstances than those in facilities where I would have dinner with my father and the dining room staff was not purposeful and intentional about putting people together who had things to talk about.
The rehab nurse thought there could be room on or near the NCH campus for such a village. Perhaps, nationally, there could be incentives for the study and development of such people-oriented living situations that adjust to activities a patient prefers in their daily life rather than expecting a patient to fit into an institution's routine and "blaming" the patient for not carrying on a pre-determined set of activities in their daily life.
Finally, modern technology and last stages of life.
To return to my anecdote about the use of sonogram technology, according to news releases the principal investigators are at the University of Queensland in Brisbane, Australia. They work with several labs in other places of the world. I tried to email with them, but there was not enough time.
Apparently, the work of the researchers continues, using focused ultra-sound in combination with "microbubbles" to temporarily open the blood brain barrier and enhance delivery of anti-amyloidal antibodies directly to the brain (See, http://www.sciencealert.com/ultrasound-with-immunotherapy-could-be-used-to treat-alzheimer-s and http://www.fusfoundation.org).
This year, this technique has been used on humans. Research is progressing quickly. (http://www.medpagetoday.com/neurology/alzheimersdisease/64114).
It would be nice if there were:
- A central place where untrained family caregivers could find verified information about the progress of research that is not tied to gatekeepers for the research studies. Perhaps the NIH website could be a source of information that has no interest in any particular path of research.
- Consideration of conducting experimental research on people with less to lose, who are certifiably near the end of their lives. Families would more fully appreciate the miracle. And, if it doesn't work, the researchers will not unduly hasten the demise of the patient.