Category: Care-Giving Concerns
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.
MJHS Hospice and Palliative Care and UJA-Federation of New York are pleased to announce the launch of the Center for Jewish End of Life Care. The Center, a web-based resource and knowledge center, is dedicated to facilitating conversations about the physical, emotional and spiritual needs of Jewish people affected by all advanced and terminal illness. Supporting the diverse needs of the Jewish community, it will enable all who live beautiful Jewish lives… to have equally beautiful Jewish deaths.
To join the conversation and explore this valuable resource, visit centerforjewishendoflifecare.org or call 1-855-885-CHAI (2424)
On the October 15, 2013 episode of Boomer Generation Radio, Enid Borden of the National Foundation to End Senior Hunger, speaks with Rabbi Richard Address about food insecurity issues for seniors.
Enid Borden is the Founder, President and CEO of the National Foundation to End Senior Hunger (NFESH), formerly known as the Meals On Wheels Research Foundation. As President and CEO, Borden frequently speaks to audiences about the issue and leads NFESH every day in its mission of engaging new partners to provide answers and create solutions that can end senior hunger.
Prior to leading NFESH, Borden was the President and CEO of the Meals On Wheels Association of America (MOWAA) for over 20 years. Under Borden’s direction, MOWAA grew from a little known trade association to become a preeminent national charity. An outspoken advocate for those forgotten seniors she called “the hidden hungry,” she guided the organization through two decades of remarkable growth, increasing its annual budget more than tenfold and overseeing millions of dollars in grants allocated to MOWAA’s member programs across the United States to support their efforts of providing nutritious meals to seniors in their local communities.
Prior to her tenure at MOWAA, Ms. Borden held several public affairs and policy positions in the public sector, including Deputy Commissioner for Policy and External Affairs at the Social Security Administration and Director of Public Affairs of the then-Office of Human Development Services within the U. S. Department of Health and Human Services. She also has been a successful small business owner.
Ms. Borden currently serves as an Advisory Board Member of the Sesame Street Food Insecurity Advisory Committee and on the American Society of Association Executive’s (ASAE) Key Philanthropic Organizations Committee (KPOC), which she chaired in 2008 and 2009. She has also been a member of the CEO Advisory Committee of ASAE, a member of the Nonprofit Advisory Board, a Member of the Board of Trustees of Alfred University and the Board of Directors of the Visiting Nurse Associations of America. Additionally, Ms. Borden has served on the faculty in the School of Graduate and Continuing Studies at Goucher College in Baltimore. She is also a monthly contributor to the Huffington Post and frequently writes articles featured on various media platforms. Ms. Borden’s work has earned her recognition in Who’s Who in the Media and Communications and in the book “Everyday Heroes: 50 Americans Changing the World One Nonprofit at a Time”.
She earned her Bachelor’s degree from Alfred University, her Master’s degree from Adelphi University and pursued study through the John F. Kennedy School of Government of Harvard University.
Boomer Generation Radio airs on WWDB-AM 860 every Tuesday at 10 a.m., and features news and conversation aimed at Baby Boomers and the issues facing them as members of what Rabbi Address calls “the club sandwich generation.” You can hear the show live on AM 860, or streamed live from the WWDB website.
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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.
I want to begin this essay with an acknowledgment: I believe hospice performs extraordinary work in life’s final stage. I know that hospice care varies from place to place, but I personally have never seen a dissatisfied customer – and by that, I don’t mean only the patients, but also the families and friends who hover respectfully and sensitively around a soul about to make that most universal and singular of journeys. Hospice provides a gentle, humane and dignified death, almost always without pain, agony or struggle. This may not be everyone’s experience, but it surely is mine.
Still, I have some deeply seated emotional reservations about hospice and I share them with you simply to spark conversation, not to effect conversion.
First, we must concede that going into hospice is a one-way trip, next stop: eternal rest in the shelter of God’s wings (or so the prayer tells us). They will keep the patient comfortable and at the request of the family, hydrate and even feed the patient (but not intravenously), but most of their care is palliative and the “cocktail” of pain killers usually hastens what they call “the transition” from life to death. It really isn’t a bad way to go. I have been at hospice bedsides many times as people expired and believe me: it wasn’t in any way awful. Still, I have never counseled hospice care unless all of the ducks were in a row. By that I mean: the patient is terminal, the family, the nursing facility or hospital are not up to the task and the patient is ready.
I offer three vignettes – all from my reservoir of memories – which are illustrative:
When my mother went into severe congestive heart failure, I hesitated to turn to hospice. She had already expressed her disinclination to go. We had discussed it (she was completely sentient until the last three days of her life) and she was in the hospital where they were “doing everything” for her. In retrospect, this was a decision that she made and I breathed a sigh of relief because I wasn’t ready to admit the inevitable. I slept in her room for three days, called the nurses when they were needed and tried to be a “good son.” She had one bad night which the nurses took care of quickly. She slipped away, her breathing more and more labored, until finally I said, “Let go, Mom, we’re all here and we love you.” Rather dramatically, she took her last soft breath and died – in my embrace and in the embrace of her grandchildren. It was not a bad death, accomplished without hospice. It was the way she wanted it. Honestly, it was the way I wanted it. The ballet between holding on and letting go is a tour de force of emotion, doubt, resignation and improbable, naïve hope.
I was called to the hospital to see an old congregant and friend who had suffered a debilitating stroke. I met with his wife and primary care physician. Both were of the same opinion: it was time for hospice. Already compromised by failing kidneys (he was by then in dialysis) and a baker’s dozen of other maladies, there really didn’t appear to be any more options. But, he was also a very tough, old guy, a survivor who had seen Kristallnacht with his own eyes and went on to be one of ABC’s top sound technicians. I entered his hospital room and as soon as he saw me, there poured forth a steady stream of gibberish, except it had a familiar ring to it. What initially appeared to be incomprehensible babble turned out to be slurred French. At that moment, I silently thanked Miss Turowski, my high school French teacher, who gifted me with the ability to speak rudimentary French, albeit with a Polish accent. In what would have brought a smile to the face of anyone who speaks the language, there began a fractured conversation between a stroke-impaired patient who hadn’t spoken the tongue since he was eight and a barely conversant Rabbi who actually produced either giggles because of my linguistic ineptitude or scowls because I wasn’t making any sense. How rapidly the shoe moved to the other foot is still a source of amazement and amusement. The conversation went something like this:
“Tomorrow, they’re going to move you to hospice”
“If I go there, I’ll die.”
“They tell me there are no treatments left that will be helpful”
“I still do not wish to go.”
I reported this back to his wife – who didn’t even know he spoke French – and there was a “hold” placed on his entry into hospice. Instead, he went into a long rehab regimen and to make a long story much shorter, he died three years later with a bite of Hamantaschen in his mouth (it was Purim). I know that the three+ years were not easy on his wife, but I would see him occasionally at the Temple and in restaurants around town. He reclaimed some of his speech, but when he encountered me, he would playfully revert to French. One who saves a life, it is as if he/she has saved the entire world (Talmud Sanhedrin, 37a).*
The “Golden Years” sometimes glow with a patina of dazzling proportions. Other times they are a travail of declining health and ever eroding independence. As autonomy, self-sufficiency and freedom of movement wear away, living sometimes becomes an assisted affair. From a home or apartment one can move to an adult congregant living facility. The next station on this odyssey may be a nursing home. The last destination may be hospice. Save for the final stop, there are still positive and enduring quality of life dimensions to be had. After all is said and done, I have found that people who possess the oft-quoted “clean hands and a pure heart (Psalm 24)” make these passages with greater ease than those who “rage against the dying of the light (Dylan Thomas).”
I had known one woman for eighteen years, always ill in some way or another and her years kept piling up. With them came moves as described above while age and illness conspired to constrict her life and narrow her horizons. Still, I never heard her once complain. I never saw her hands idle or her spirit diminished. Whether I visited her in assisted living, the nursing home, the hospital or hospice, the first words out of her mouth were always the same: I love you. Hers was a special soul, fully cognizant of what life can randomly and inexplicably deliver, but unwilling to surrender to either despair or hopelessness. When she went into hospice, she did not go kicking and screaming – and resignation was not a part of the equation. She went with the full knowledge that this was where a long life had taken her. She went with no bitterness or regrets and she died the same way.
By its very nature, all experience is anecdotal. These are but three of mine surrounding and informing an issue from which there is no escape. As “boomers” these are among the decisions and experiences we will have to negotiate. Please give this looming inevitability some thought now; there are enough surprises – always – on the horizon.
Caring from a Distance, resource for long-distance caregivers, is featured on Boomer Generation Radio
The September 24, 2013 edition of Boomer Generation Radio features a conversation with Nora Jean Levin, executive director of Caring From a Distance, founded in 2002 to serve the seven million Americans who help manage the needs of seniors or other loved ones while living hundreds of miles away. The organization was created by men and women who personally struggled with the anguish, stress and frustration of long distance care. Levin is also the author of How to Care for Your Parents.
I recently had the honor of being part of a discussion at a small conference in Chicago as part of an organization called C-CHANGE. It is devoted to exploring and developing teams of people that care for cancer patients and, by extension, their families. Dr. Elizabeth Clark, the co-chair of C-Change’s Workforce Initiative, closed the seminar by reminding those in attendance that there will not be enough people to take care of individuals who will be diagnosed with cancer in the next decades. She called again for increased communal support and collaboration to help meet this expected demand. This is very reminiscent of similar warnings from organizations like Alzheimer’s who also note that there are not enough care-givers even now to meet a growing reality.
I mention this because I was struck with a recent situation. I was working with a family who modeled exactly what Dr. Clark was speaking about. In fact, we published Bill’s story here on jewishsacredaging.com.
It was a story that sparked a lot of reaction. It was a story of how Bill chose to come home to live out his last weeks surrounded by his family and friends. It was also a story of how, in those last weeks, a real “team of caring” evolved. Doctors, social workers, hospice workers, long time friends, family and additional caring folks, most of whom were not caring professionals, all came together to bring support and love which carried this family through a difficult time.
I mention this because these were real heroes. The “team” worked. There was no real coordinator. There was just a sense that this was “right” and that no one would be allowed to be alone. We baby boomers are in the process of raising these issues of trying to reconcile a need for increased needs in a world of less resources. In fact, many feel that boomers are the driving force in this tension. Be that as it may, it is important to realize and understand that, as great as professionals are as care-givers (and they are), often, the real support and primal care-giving is done by friends and family, who, motivated out of love and concern, become real modern heroes. Thank you to them all.
Rabbi Richard F Address, D.Min