Excellent article from blog site of Dr. Nanette Davis:
Fine blog article via Mavencare on aging: skin, eyes, bones, brain.
What Michael Kram, MD, does here is describe his journey from his first-class medical education and outstanding career as a gastroenterologist through a topsy-turvy, scary roller-coaster of a ride of conflicting medical diagnoses of his eventually disabling illness, a trip ending in a resolution of the ambiguities of his condition, a struggle that gave him greater insight into the strengths and weaknesses of the current system of medical care in America. As was said of another author whose views were sculpted by adversity, Dr. Kram has not returned from Hell empty-handed.
Dr. Kram’s story is compelling, and its themes are important:
• the vastness of medical information that can obscure the answer to a rare disorder, the zebra that is not the horse doctors are trained to see and to treat;
• the difficult role of an MD, in preparation and the demands of his calling;
• the pride that prevents such experts from acknowledging ignorance, and the legal pressures not to do so;
• the tragedy of the loss of one’s ability to practice one’s profession, especially when it is a calling;
• the value of being in the inner circle when trying to get expert medical help, “whom you know;”
• the need to be your own medical advocate;
• the importance of family and marriage;
• the role of God and faith in our lives;
• the increasing depersonalization of medical care, due to its take-over by larger and larger institutions, often due to pressures from government and insurance agencies.
Readers unfamiliar with Orthodox Jewry will find much that is new to them here, much to admire. Fortunately, an extensive glossary gives the meanings of many of the special terms used in the Jewish religion and in the medical profession. Doctors and their families will recognize many situations characteristic of the medical profession. Educated laymen will come to understand that giving up the care that the medical profession has traditionally provided in order to get treatment by institutional employees, rather than dedicated personal physicians, is frequently a bad bargain for doctors and patients.
Recently, Dr. Gerard J. Gianoli wrote (in a July 2016 newsletter for the AAPS, the Association of American Physicians & Surgeons) a defense of private medical practice as the breeding ground for many medical improvements and innovations; he noted: Throughout the last 70 years, the U.S. has been the greatest mover and shaker in the world of medicine. Most major medical innovations have either been born or significantly developed here. And, many of the major innovations have come from small private practices—certainly not from the government. Innovative changes do not come from out of our universities—they come from individuals who work at our universities. However, true radical, transformative innovations have often come from private practices. Dr. Gianoli cited many examples, including those from his field of specialization, otolaryngology.
The Industrial Revolution swiftly brought the assembly line and its advantages: higher productivity, greater speed, more uniformity, reduced costs. In the automobile industry, we got the Model T Ford, which you could buy in any color as long as it was black. Competition soon developed, with many manufacturers, many models, many colors, much consumer choice, and with a wide range of prices. Current trends in regulation of the medical profession favor assembly-line treatment, with the personal care of the private practice physician shunted to “boutique” medical practices. For a while, some consumers and some doctors can still participate in the kind of personalized medicine they prefer, but if physicians and the public do not protest the decisions of those who are in positions of power and who arrogate to themselves the right to determine health care policy, even those exceptions will disappear.
If this book helps promote a profound re-assessment of the current trajectory of the management of medical care in America, it will have made a major contribution to the future well-being of patients and physicians alike. If Dr. Kram’s observations are heeded, the medical profession, with the help of concerned consumers and informed taxpayers, will have started to heal itself…at last.
I had the privilege to read an advance review copy of Zebra, and much of these, my comments, became part of the book’s Foreward.
This is my review for Amazon of Dr. Kram’s compelling book, Zebra: It’s Not All Black and White in the Physical or Spiritual Worlds.
This excellent book by Canadian writer Rick Lauber (2015) shares the lessons he and his two sisters learned while caring for and obtaining care for their mother (Parkinson’s) and their father (Alzheimer’s). His book is directed not only had teaching how to provide and obtain care for loved ones, in his case his parents, but also how to assure that the caregiver takes adequate care of himself. The book is particularly good on the psycho-social aspects of caregiving for one’s ill parents.
Here is the table of contents:
Chapter 1: Defining Caregiving
- The Different Types of Caregivers
- What Type of Caregiver Are You?
Worksheet 1: Caregiving Self-Analysis
Worksheet 2: Your Circle of Caregiving
Chapter 2: Caring from a Distance
- The Challenges of Long-Distance Caregiving
- What to Do When You Get There
- Find the Necessary Information and Documents
- Check the Safety of Your Parents Home
- Respect the Decision That Not Everyone Wants to Relocate
- Emotional Distance
Worksheet 3: Home Safety Checklist
Chapter 3: Finding Suitable Accommodations
- The Different Types of Living Arrangements
- Things to Consider When Searching for Accommodations for Your Parent
- Affording the Cost of Care
- The Future of Seniors’ Assisted Living and Long-Term Care
Worksheet 4: Researching Long-Term Care Facilities
Chapter 4: Moving Your Parent
- Organizing the Move
- When Your Parent Doesn’t Want to Move
- When Your Parent Can No Longer Drive
Worksheet 5: Driving Safety Checklist
Chapter 5: Organizing Your Parents’ Documents
- Keeping Documents Organized
Worksheet Six: Document Organizer
- Understanding the Important Documents
- Medications and Medical Information
Worksheet 7: Medical History Log
Worksheet 8: Medication Log
Chapter 6: Visiting Day
- Enjoying Activities with Your Loved One
- Finding the Best Time to Visit
- Celebrating Holidays and Birthdays
Chapter 7: Maintaining Harmony When Working with Family Members
- How To Conduct a Family Meeting
- What to Discuss During the Family Meetings
Chapter 8: Caring for Yourself
- Take Care of Your Own Health and Wellness
- Socialize and Pursue Hobbies
- Join a Support Group
- Pamper Yourself
- Schedule Time for Yourself Regularly
Worksheet 9: Scheduling “Me” Time
- Delegate Some of the Work
- Find a Day Program for Your Parent
- Interviewing and Hiring Help
Worksheet 10: Getting to Know a Potential Caregiver
- Taking Care of Yourself after Your Loved One Dies
Chapter 9: Remaining Active
- Preparing and Taking Your Parent For Seasonal Outings
- Find Time for Your Own Physical Activity
- Activity Isn’t All About Physical Exercise
Chapter 10: Men and Women Care Differently
Chapter 11: Obamacare: What It Means for Seniors and Family Caregivers
- Stay Informed
Chapter 12 Mobility Aids and Emergency Safety Devices
- Mobility Aids and Other Useful Items
- Emergency Safety Devices
- Travel Kit
Chapter 13 Finding Joy In Caregiving
Chapter 14: Final Thoughts
Download kit —
Lauber offers a set of forms in Word or PDF format to help you keep track of caregiving needs, via this URL
For Example, here is Worksheet 1:
Self-evaluation is crucial to caregivers. While you will be presented with many new responsibilities and challenges, you must know what you can do and the extent of your own personal limits.
Answer the following questions as honestly as you can. Addressing these issues sooner rather than later will help you identify your own strengths and weaknesses, which will be beneficial to you as a caregiver. Share these questions (and your answers, if you feel comfortable) with your siblings and delegate your roles appropriately.
- What can you do as a caregiver?
- How do you feel about becoming and acting as a caregiver?
- What would you identify as your characteristic strengths and weaknesses?
- Who will help you with your caregiving responsibilities? (Identify what others can do.)
- Beyond your immediate circle of contacts, where will you look for additional help?
- Can you work easily with others or do you prefer to work independently?
- Are you flexible with your own schedule?
- What negative issues do you foresee with serving as a caregiver?
- How will you respond to or counteract these negative issues?
- Where will you seek respite for your loved one?
- Where will you seek respite for yourself?
- List three additional ideas for personal coping and caring mechanisms (these will be new areas of interest to you that you could try in the future).
- How much personal respite time will you give yourself?
- What do you want to achieve as a caregiver?
- Are you hesitant or reluctant to serve as a caregiver? If so, why?
- How much will this hesitation interfere with your caregiving duties?
- Will you be able to perform certain tasks or do you need to assign them to others?
- Can you honestly look at yourself in the mirror and say, “I am doing the best job I can as a caregiver”?
- Do you have any regrets about serving as a caregiver? If so, what are your regrets and how can you resolve them?
- Where can you learn more about your loved one’s medical condition and prognosis?
- What other personal or professional demands, besides caregiving, exist for you?
- How will you know you have done your best being a caregiver?
- Are you an optimist or a pessimist? (Note that optimists will have an easier time and might be better caregivers.)
Lauber, R., (2015), The Successful Caregiver’s Guide, Canada: International Self-Counsel Press, Ltd.
Part memoir, part self-improvement text, part professional advisory, this often-moving book by Professor Lawrence T. Force implicitly and explicitly delivers for caregivers what its subtitle promises: key tips for survival, strength and patience. Pay attention: many (perhaps most) of us will be in the caregiver role, if we are not there already.
I first met Larry Force at a symposium on alternatives for care for seniors, held at local library. His keynote talk was impressive in its wisdom and its obvious caring. As a gerontologist, Dr. Force has decades of experience in the field, with particular emphasis on victims of Alzheimer’s, including his dear mother. His doctoral study, almost four decades ago, centered on the behavior of family members in accessing adult day care for their relatives. I was flattered to be invited subsequently to speak to his class about being an advocate for patients and about being a caregiver myself.
Dr. Force has written numerous professional articles, including one in which he described, as he does here, four styles of caregiving: the Hero (who does it courageously and without complaint), the Martyr (who grudgingly supplies help while bemoaning being a caregiver), the Snake (who slithers away from the situation) and the Devastated (who can barely help, due to overwhelming grief over the predicament of their loved one). The case histories he summarizes make the reader hope to be in the Hero category, while recognizing what that may entail.
Subsequently, he and his colleagues have also identified the Wolves (who swarm in, take control and isolate the patient from the family) and the Liquidators (whose concern is not the patient but the patient’s assets).
Dr. Force notes that every day, in the USA, 10,000 people turn 65, many of whom will need a period of prolonged care before they die. That care is likely to be provided by a spouse or a child and eventually a nursing home.
On the subject of nursing homes, it encouraged me to learn of the excellent experience Dr. Force and his family had regarding the care for several years of his mother in a Catholic facility New York, and his thank-you letter to that organization is a model of its genre.
It’s all about you, he emphasizes. “You cannot take care of someone else or be present for someone else if you aren’t taking care of yourself.” Caregiving includes paying attention to your own well-being.
Part of his experience was nearly dying, “a yearlong odyssey that would change my life.” Bedridden for months, he was urged by a friend to change his thinking radically, to view himself as “competent, in control, healthy, strong….” He had been introduced to the healing power of mental imagery, a power that can benefit both the cared for and the caregiver. It led to his becoming certified in hypnotherapy and re-orienting his practice to include cognitive, wellness, and exercise elements. Often, diet and exercise produce big improvements in well-being.
Mentally, we are at our best when we are neither dwelling in the past nor worrying about the future, but experiencing and observing and being mindful of the present. Dr. Force discusses mindfulness and exercise (including structured breathing) and imagery/visualization. We want to establish beneficial habits and eliminate harmful ones. If we are aware we are repeating self-defeating habits, we are on the way to erasing them. He offers a detailed how-to guide to enhanced relaxation and imagery.
The book includes several short pieces by other caregivers, emphasizing the variety of situations and experiences, yet reinforcing the point that if the caregiver is not careful of self, he or she will not be able to continue to supply support when it is needed.
In his practice, Dr. Force applies “Holistic triage…natural supports to enhance cognitive (thinking and imagery), energy (nutrition, wellness and spirituality), and movement (exercise, strength building, yoga, Pilates, and breath work)… [and] internal reflection.” This discussion takes the book beyond do-it-yourself, but we are encouraged to do much of this on our own: “Change what can be changed.”
While upbeat in tone and prescriptions, the book includes some very touching material, including M.J.’s story, about the nearly impossible situation she has been managing at home, trying to keep from having to put her cognitively impaired husband into a nursing facility. Declining health aggravated by medical errors have put their lives into a tailspin. There may not be a solution to her situation, but we read it and think, “I wish her well. Thank God, I’m not M.J.”
Chapter 10 discusses nutrition and exercise, with input from registered dietician Louise Turino. To have a sound mind in a sound body, you have to eat right and exercise. Lots of information is presented, though I skimmed it, as I think I already know how to eat and exercise. I did particularly like this quote from the Mayo Clinic, “Exercise is meditation in motion.”
The book ends with a helpful “Resource Section,” giving annotated links to organization web sites, with descriptions of what each contains.
As a long-time caregiver myself, I strongly recommend this book for others who rise to this sometimes-herculean challenge.
Professor Lawrence T. Force, specialist in gerontology in the Department of Psychology of Mount Saint Mary College, Newburgh, NY, has just published a book on caregiving and managing the health of the caregivers. Having heard Prof. Force lecture, I am looking forward to reading and reviewing his book, which I have downloaded from Amazon via this link:
Mount Saint Mary College’s Professor of Psychology, Lawrence T. Force, a gerontologist, describes his family’s experience with caregiving for his mother:
Excellent advice from http://ukcareguide.co.uk/31-ways-make-home-care-comfortable/
Exceptionally fine article. Includes medical costs, and costs for custodial home care and skilled nursing at home, Medicare and Medicaid limits for nursing homes etc.