The Caregiver’s Journey

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  • Posted on Aug. 25th, 2015

by Joy Loverde

 

No one leaves the caregiving experience the same as when they started, nor do they look at life, and The caregiver journey book coverdeath the way they did before.

 

These words originate from the Introduction to my book, The Complete Eldercare Planner, and were written in the hopes that family members will continuously find ways to see the light at the end of the tunnel. Never knowing what may happen
from one day to the next comes with the territory of taking on the role of family caregiving.

 

There’s a practical, almost business side to caregiving that many of us rely on as a way to manage the challenges and stresses — checklists and to-do lists among other tools help calm our nerves. While The Complete Eldercare Planner is positioned as the practical how-to eldercare guide, everyone knows there’s much more that meets the eye when it comes to caring for Mom and Dad.

 

I was recently offered the opportunity to read and review a book in the marketplace — The Caregiver’s Journey: Compassionate and Informed Care for a Loved One written by Todd F. Cope, RN. In his twelve plus years as Director of Nursing at a 163-bed assisted-living community, he was approached on a daily basis by family members who sought his guidance and wisdom. As a busy caregiver for his own parents, he completely understood the need for caregivers to seek the company of other caregivers. Todd has lived through those long and sleepless nights, and knows how it feels to juggle work and family. And so the book was born.

 

The Caregiver’s Journey is intentionally brief and not designed to have all the answers — unlike The Complete Eldercare Planner which is comprehensive and extensive. The book carries readers to safe emotional safe ground when they find themselves in a “deer-in-the-headlights” eldercare moment. The author accomplishes this by offering real-life stories that relate to the content that follows. Truth has a way of reaching our inner emotions and this format engages caregivers while simultaneously giving them time and space to breathe deeply.

 

The author’s stories are composed in such a way that readers will likely recognize something similar that has happened to them or recognize the possibility that it could. He also tactfully introduces humor into the stories to help drive points home. Lord knows we all need a good laugh and ways to escape from time to time.

 

Guilt, love, joy, anger, frustration and of course, loss — this precious book is a reminder that the caregiver’s journey is made up of many experiences, all of which should be remembered rather than allowing those that are less desirable to overpower the good that is inherently in the caregiving process. In Todd’s own words, “Though manifested in a variety of forms, love is the binding force in the foundation of caregiving.”

 

As I consider the intent of The Caregiver’s Journey and The Complete Eldercare Planner, while both books can stand alone, together they complement each other as useful tools for any caregiver.

 

Visit www.toddfcope.com for Stories Worth Remembering

Until next time, I wish you well.

 

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Hospice: I had no idea

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  • Posted on Jul. 29th, 2015

by Joy Loverde

Like many Boomers, I am experiencing the deaths of close friends and beloved family members at a fast and furious JoyRight to the Point, Joy Loverderate. Sometimes the deaths come after a long and painful dying process. Other times – Poof! People are gone with no warning. This week, three friends whom I loved dearly died unexpectedly. I felt like someone punched me in the stomach.
In an attempt to deal with my grief, I went searching for information on the Internet and came upon an organization called The American Hospice Foundation (AHF). For over 20 years, AHF worked to improve access to quality hospice care through public education, professional training, and consumer advocacy. And just like the deaths of loved ones, I was saddened to learn that AHF has also “died.” They closed their doors June 2014. What a loss!

I learned a lot about hospice from the AHF website, and if AHF were to shut down the website, their invaluable content would be lost in cyberspace forever. Here’s a brief summary of two new things that I learned about hospice from the AHF website:

#1. Families have a choice in hospice programs.
Hospice is likely to be the most important health care decision we make. For a long time, we could assume that every hospice provided high-quality care. That assumption is no longer safe. Families must shop around. To start the process, request a home visit for patient assessment and a customized Q & A. How receptive a hospice is to the following questions is an indicator of the quality of their program:

  • What do others say about your organization? Get references.
  • How long has the hospice been in operation?
  • Is the hospice Medicare-certified?
  • What is the expectation regarding the family’s role in caregiving?
  • Is there anything currently being done for the patient that you would not do?
  • (Make a list of specific family needs.) How will you address these needs?
  • What extra services are offered?
  • Is your availability 24/7?
  • How rapid is crisis response?
  • Do patients ever get transferred to inpatient care? Under what circumstances? And where do they go?
  • Is family respite care available? What kind? Under what circumstances?
  • Are your MDs/RNs certified in palliative care?
  • How are family complaints handled?
  • What kind of emotional support do you provide – now and after?

#2. Despite palliative medicine, many individuals continue to suffer at the end of life.
Patients, suffering or not, have the right to refuse life-sustaining medical treatment (such as dialysis or a ventilator) through instruction, advance directives, or through a substitute decision-maker. But what about people, including a large and growing population with advanced dementia who are not dependent upon life-sustaining medical treatment? How do they exercise this option when there is no life-sustaining medical treatment to refuse?

To accelerate the dying process, people sometimes choose to voluntarily stop oral eating and drinking (VSED) as an exit option. Nevertheless, VSED may be resisted by healthcare practitioners either because they think that it is illegal or because they are uncertain of its legality. To date, there has been little legal analysis of a right to VSED.

If individuals wish to refuse nutrition and hydration just as they may refuse other intrusions on their personal autonomy, it must be discussed ahead of time and can be exercised through an advance directive or a surrogate decision maker.
None of us wants to be at the mercy of a stranger (healthcare practitioner) who holds opposing views to what we or our loved ones would want at the end of life. Do your homework now.

Until next time…

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Talking Points from the White House Conference on Aging

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  • Posted on Jul. 21st, 2015

White House Conference on Aging The White House Conference on Aging took place on July 13. The President held the conference in preparation for the impending retirement of the Baby Boomer generation, which is typically described as consisting of the people born from 1946 to 1964. They make up roughly 24 percent of the population in the United States – and the oldest members have already reached retirement age. The conference was intended to do nothing less than prepare the U.S. for the retirements of roughly 77 million people.

Although the average American can live for almost 80 years, older Americans do not enjoy the best health. Eighty percent of seniors have at least one chronic condition like diabetes or heart disease, and 50 percent have at least two. According to the Milken Institute, the total cost of treating the most common chronic diseases is over $1 trillion per year – and that is expected to increase to $6 trillion by 2050.

At the conference, the President described the various issues facing seniors, their loved ones, and their caregivers. As the number of senior citizens grow, the number of professional caregivers will need to keep pace. Researchers at the University of California – San Francisco estimate that at least 2.5 million more home health care aides will be needed by 2030. Obama noted that one way to increase the number of aides is to improve their working conditions and give them flexible hours and family leave.

The Centers for Medicare and Medicaid Services proposed a rule to improve the care of seniors in nursing homes. Under the proposed rule, seniors would receive better food and medicine, staff members would receive training in caring for seniors with dementia, and safety rules would be updated.

Attendees at the Conference also proposed a variety of ways to preserve and improve the health of seniors. They announced a variety of initiatives designed to combat Alzheimer’s Disease and improve seniors’ physical fitness. Such initiatives include Go4Life, an exercise and fitness program devised by the National Institutes of Health. The Health Resources and Services Administration announced a new training curriculum for health care workers specializing in treating dementia patients.

The Administration also launched Aging.gov, a one-stop information warehouse that provides information on local, state and federal services dedicated to helping seniors and their caregivers. By September 2015, the federal government will release data about the aging to Data.gov, the site devoted to data generated and kept by federal agencies. They’re also trying to shift focus towards technology as an aid for the elderly, as pointed out by Forbes. On the forefront were services that enable seniors to live easily and safely at their home. Grocery delivery services like Peapod, home security and automation systems like those from ADT, and even a surprising amount of use of the service Airbnb by the 50+ crowd looking to not only save money, but to cash in on unused space. The special sessions on technology clearly ran the gamut and included a discussion on the importance of designing products specifically for seniors, who often have specific physical limitations.

Attendees at the Conference also discussed retirement and the need to help older Americans better prepare themselves for retirement. Currently only 78 percent of full-time workers join employer-run retirement plans and only 57 percent of part-time workers join such plans. Participants noted such plans were more effective when employees were automatically enrolled. Not only do people need help preparing for their retirements, they also need help to make sure they don’t outlive their assets. Seniors need annuities that will provide them income their whole lives.

In addition, most older Americans want to remain in their homes and not move to a retirement home or nursing home. The US Department of Housing and Urban Development published a guide describing the changes an older person might need to make to their home. Similarly, the US Department of Transportation announced plans to establish the National Aging and Disability Transportation Center to make public transportation more accessible to seniors and disabled people.

The aging of the Baby Boomers will affect everybody, as will many of the policies put in place to help its members. Many of those policies and initiatives will also affect future generations. Cures and treatments for the various dementias, for instance, could benefit people for decades to come. Given that, the White House Conference on Aging is vitally important.

Spencer Blohm is a freelance blogger specializing in a variety of subjects. Healthcare, particularly of the elderly, is of special interest to him as he sees the challenges facing his grandparents and parents as they grow older. He lives and works in Chicago.

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