GUEST Columnist: Pamela D. Wilson
In recognition that November is National Hospice and Palliative Care Month, we are proud to bring you a series of guest columns from Pamela D. Willson, who is an advocate for family and professional caregivers. This post is an excerpt from Pamela’s new book The Caregiving Trap: Solutions for Life’s Unexpected Changes. Check back next week for another great excerpt! Also, we will be interviewing Pamela on our show in a couple weeks. If you have a question about Caregiving, please e-mail me and I will ask her on the show!
By Pamela D. Wilson, CSA, MS, BS/BA, CG
The role of caregiving poses many unexpected challenges. While the process of bodily aging means that many of us will eventually need and receive care, it is also likely that we will receive care from professional caregivers. Professional caregivers come in a number of backgrounds, shapes, and sizes that include physicians, nurses, nursing assistants, hospital or care community staff, care managers, in-home caregivers, occupational and physical therapists, hospice staff, attorneys, CPAs, bankers, and any individual involved in supporting health or well-being. Professional caregivers are, in reality, anyone who provides support and who is not a family member, friend, or acquaintance.
Involvement and support from professional caregivers is valuable to the point that the support benefits and improves quality of life. However, many of us find that the care we desire for a loved one is not always the care that results. Involvement with professional caregivers who fail to meet our expectations can be equally, if not more, frustrating than dealing with difficult family members.
Professional caregivers who are experienced and ethical provide value that is of significant benefit to care situations. Others who choose the care industry to work through their own personal caregiving issues or those who lack professional boundaries can be extremely damaging to care situations and family interactions. Many times it is difficult for family to distinguish between ethical and professional caregivers of questionable character until situations have gone past the point of no return.
Caregiving families in unfamiliar territory often rely on the expertise of those in the healthcare and aging professions. While advice and experience are the reasons professionals are utilized, families must also be discerning in developing these relationships. In many situations, understanding industry limitations and asking the right questions help avoid frustrating experiences on the part of families seeking care and support for a loved one. The challenge is that these limitations are not always evident. Family caregivers assume that healthcare providers are able to provide a higher level or a greater number of services than industry standards permit.
Many of the issues arise from caregivers, care recipients, and the medical community speaking a “different language.” I related this factor to being out of one’s “element” and use automobile maintenance as a relatable example.
A consumer takes their automobile to a mechanic for an evaluation. The mechanic rattles off a long list of needed repairs. The consumer—unless they have mechanical experience—has difficulty evaluating whether the information provided by the mechanic is accurate or reliable or whether (unless a prior relationship existed) this is a mechanic who can be trusted to only recommend needed repairs versus repairs that are optional but might be beneficial in the long run.
I also relate the idea of regular car maintenance to the maintenance that our bodies require to remain healthy. The human body requires sleep, good nutrition, physical activity and other actions to remain healthy. If these do not occur the body breaks down similar to an automobile breaking down when regular maintenance like oil changes are not completed.
The challenge for caregivers and care receivers when in unfamiliar territory is the ability to know what questions to ask and how to advocate for a loved one. Arriving at an expected outcome related to medical care requires the ability to provide facts, to negotiate situations, and to be a strong advocate with the medical profession who many times feigns “not responsible for that” and then the patient suffers. These situations occur daily and frustrate families who only want the best for their loved ones. At times rather than being helpful, the medical profession seems more like the prevention of care department.
Other unexpected challenges result from Americans who are living longer and therefore are accumulating more diseases and disabilities. One in five Americans will be eligible for Medicare by 2030. Statistics also indicate a shortage of healthcare providers certified or specializing geriatrics.[i] If you have attempted to find a physician accepting Medicare or a psychiatrist or psychologist providing mental health services, you may have already discovered a lack of available providers. If you or a loved one has received services from home health or in-home caregivers you may also be experiencing challenges finding qualified and caring assistance in your home.
Nursing home direct care jobs have few skill requirements, minimal selectivity in hiring, cursory initial orientation and on-the-job training, low wages and benefits, and supervision focused on completion of defined tasks. Workers are treated as unreliable and easily replaceable. [ii] This description is accurate of most direct care workers in skilled and non-skilled home care and those working in assisted living communities, in nursing homes, and in hospitals and is fueled by the idea of a “low road” enterprise.
The term low road enterprise was initially coined by the manufacturing industry, where focus was on jobs geared to specific tasks requiring narrow skills with no discretion over the task and the provision of relatively low wages. In a sense, a worker was hired to place a widget into a piece of machinery and repeated this task hundreds if not thousands of times throughout the day.
How many of you remember the television series, I Love Lucy, and the episode of Lucy and Ethel working on the assembly line in a candy factory and expected to wrap chocolates? Google “I Love Lucy’s Famous Chocolate Scene” and you will see a funny but simple example of a low road enterprise.[iii] Today fast food restaurants like McDonald’s and Burger King and some care communities may be considered low road enterprises. It is important to understand that many of the individuals caring for your loved ones have low levels of training and skills. This does not mean that these individuals are not caring and committed however it may mean that you may wish to seek advice from individuals with greater education and qualifications.
We know that family caregiving is difficult from an emotional perspective due to the stresses involved in caring for parents. Imagine how the dynamic changes for professional community care staff who are not only required to manage the care of ten individuals in their daily schedules, but who also come into direct contact with concerned and demanding family members every single workday.
Having this insight may allow you to manage expectations regarding care. This also presents an opportunity for you to openly discuss care needs with professional providers and to set expectations that may reasonably be met, avoiding frustration on your part and the professional provider organization. Many families fail to have these discussions because of the perception that the care provided is at a higher level than may be realistic.
Because the senior care industry is considered a booming industry, the number of entrants in all business categories from in-home care to care communities to case managers to physicians specializing in elder care, is and will continue to be significant. This presents many inherent risks of which consumers should be aware. Rather than taking experience at face value, investigate the background and the qualifications of the individuals from whom you seek support. Are the individuals or organizations part of national certifying organizations? Do they possess advanced degrees? How many years of experience do they have and in what capacity?
So many areas in healthcare remain unregulated. Lack of regulation poses danger for the average consumer who may lack literacy skills to thoroughly investigate service providers. Professional boundaries and ethics come into question with providers who want to be helpful and may feel pressured by families to provide information or support outside of the provider’s expertise. Families also participate in boundary issues when they desire that professional providers become “friends” rather than maintain a professional relationship. This dual relationship status is challenging and results in the potential for sub-optimal care.
In 2011, Michael Berens, a Seattle Times reporter, completed an investigative report called “Seniors for Sale: Exploiting the Aging and Frail in Washington’s Adult Family Homes.”[iv] Since this time, other investigative reports have surfaced including the 2013 report by PBS’s Frontline called “Life and Death in Assisted Living.”[v] Standards for qualifications and levels of care vary throughout the healthcare industry. As a consumer of services, the benefits of being informed are significant, or you or your loved one may be at risk.
Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM. In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.
Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, will be available on October 6, 2015 through all major bookstores as well as on PamelaDWilson.com. You can find her on YouTube, Facebook, Twitter, and Linked In. ©2015 Pamela D. Wilson All Rights Reserved
[i] The Demand for Geriatric Care and the Evident Shortage of Geriatrics Healthcare Providers (New York: The American Geriatrics Society, 2013) http://www.americangeriatrics.org/files/documents/Adv_Resources/demand_for_geriatric_care.pdf
[ii] Christine Bishop, “High Performance Workplace Practices in Nursing Homes: An Economic Perspective,” The Gerontologist, 54, no. 31 (2014): S46-52, doi 10.1093/gerontgnt163
[iv] Michael Behrens, “How the Aged and Frail are Exploited in Washington’s Adult Family Homes,” The Seattle Times Special Report Seniors For Sale, January 30, 2010 accessed October 10, 2014 http://www. seattletimes.com/html/seniorsforsale/2010939195_seniors31.html_
[v] “Life and Death in Assisted Living,” PBS Online, July 30,2013 accessed October 10,2014 http://www.pbs.org/wgbh/pages/frontline/life-and-death-in-assisted-living/
Check back next week for another great excerpt! Also, we will be interviewing Pamela on our show in a couple weeks. If you have a question about Caregiving, please e-mail me and I will ask her on the show!
About The Caregiving Trap (from http://pameladwilson.com/book/)
Caring for aging parents and family members with declining health can stir up a range of feelings that include guilt, sadness, and exhaustion. In The Caregiving Trap: Solutions for Life’s Unexpected Changes®, Pamela D. Wilson delivers solutions that will settle your emotions and help you make informed and intelligent decisions as a caregiver and on behalf of loved ones.
Through her heartfelt advice and extensive expertise, you will acquire knowledge and skills needed to navigate the caregiving journey with honesty, respect, and dignity.
The Caregiving Trap includes straightforward information and helpful step-by-step exercises to help you:
- Recognize early signs that loved ones will require special care and advocacy
- Initiate conversations about sensitive mental and physical health issues
- Acknowledge the challenges caregiving brings to family interactions and relationships
- Identify actions you can take to facilitate clear and open communication
- Set boundaries that allow you to avoid burnout and not sacrifice your life and well-being
- Gain awareness of the personal and financial obligations resulting from caregiving
PAMELA D. WILSON is an advocate for family and professional caregivers. She is a recognized expert in the areas of advocacy, caregiving, care navigation, aging parents, family and professional caregiver relationships and long term care. An industry leader, Pamela desires to change the common belief that minimum standards of care are acceptable. Read more: http://pameladwilson.com/pamelas-story/.
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