Monday, April 2, 2012
Jennifer Jilks, retired teacher and educational writer, moved to Muskoka to care for her failing parents. Her intent: to write a book about teaching. Leaving behind friends, family and support systems, she was forced to retire early due to caregiver stress, depression and burn-out. Rather than the book about teaching, she participated in helping her parents navigate through end-of-life issues and wrote of her journey helping her parents die with dignity.
Her mother died at home from cancer, and her father from a brain tumour while in Long-Term Care. Part memoir, part research, the book includes coping strategies, and information discovered about the maze of Ontario Health Care options. Living and Dying With Dignity follows her parents’ journey, carefully explaining what happens after the diagnosis of cancer. Many have written success stories, but how do you cope when cancer or a brain tumour returns, when juggling as an adult child and a caregiver? What are your rights?
Author of many educational publications, and a school teacher from grades JK to 8, with workshop presentations ranging from Internet Safety, Web Design for Students, Integrating Technology for Exceptional Students, Jennifer has turned these skills towards adults.
Her work with the young has been transferred to working with older adults as a Peer Health Educator with the Cardiovascular Health Awareness Program, a Consultant with the Provincial Aging at Home Strategy, and a blogger: ontarioseniors.blogspot.com
The book’s first section is a memoir, which deals with the emotions of relocating, finding care and suitable supports for her parents. The second section is a research-based section with helpful advice. Since the senior generation are often reluctant to ask questions, and people often don’t know which ones to ask, this book includes information about your rights as a patient, i.e., treatment plans, discharge options, and questions to ask your oncologist. You have a right to know treatments, treatment symptoms, options, and quality of life issues. There are many barriers to getting health care in Canada.
My book is part memoir, part research-based. Since my parent's generation were reluctant to ask questions, and I didn't know which ones to ask, I have included information about your rights as a patient, i.e., treatment plans, discharge option, and questions to ask your oncologist. You have a right to know treatments, treatment symptoms, options, and quality of life issues. There are many barriers to getting health care in Canada.
The capitalized headers are chapter titles. The lower case sentences explain chapter content.
PART ONE: MY PARENTS’ FINAL YEARS
2002: THE RAVAGES OF OLD AGE - aches and pains become issues, multiple comorbidities.
2003: MOM’S SURGERIES; DAD’S SEIZURES - both have surgery: Mom for leukplakia, Dad has his brain tumour removed.
2004: STRESS--AND MORE STRESS - my caregiver story as I juggled work, parenting, and parenting parents.
2005: INDEPENDENCE ISSUES - no longer can they manage their ADL and IADLs.
2006: MOM’S PASSING - Mom passed away at home and no one told us about Hospice volunteers. There were endless trips via ambulance to hospital. Dad was having radiation treatment 200 km to the south in Toronto during this time. He became delirious with infections, a risk from radiation no one told us about. He was sent home from emergency with no Rx, unable to use the toilet.
2006: THE WRITING ON THE WALL - Dad's brain tumour grew back. He lost cognitive and executive function. I wrote about our search for Long-Term Care.
2006: I, CAREGIVER - How difficult to feed Dad almost every day, with anticipatory mourning. I went on anti-depressants and had to stop working at my teaching career. I was depressed with bereavement issues, menopause, as well as stress from work.
2007: DAD’S PASSING - I wrote about his final months, weeks, days as I fought for care, medications, support from health care. I provide information on physically and emotionally providing care, i.e., mouth care while dying.
PART TWO: THE PERILS OF AGING AND OF CAREGIVING: THE RESEARCH
THE STATISTICS OF THE SENIOR YEARS - how many of us have pain and multiple medical issues? Read about: cholesterol and depression.
ONCOLOGISTS - What questions to ask - what to expect and what are your rights?
LYMPHEDEMA - When a lymph node is removed there is swelling and the potential for clots.
BRAIN TUMOURS 101 - diagram of brain function. Dad lost his retrieval of nouns and had other communication and cognitive issues.
DEMENTIA AND DELERIUM - What is the difference? It is important to know.
DEMENTIA: ETIOLOGIES, RISKS, PREVENTION AND AMELIORATION
SYMPTOMS AND BIOLOGICAL CONSEQUENCES OF DEMENTIA - Plaque build up in the brain prevents the brain from processing information and results in behavioural, social and emotional disorders.
MEDICATIONS - Are you at risk for polypharmacy? Do Medscheck.
CAREGIVING IN CANADA - What are your rights as care recipient or caregiver? What can you expect? Sources of information: check out my senior's blog.
PATIENT NAVIGATOR - This works well for Alzheimer's patients: First Link or the support from the Cancer Society, but we all should have the benefit of an advocate.
INTRACRANIAL PRESSURE: SYMPTOMS - What can you expect with a brain dysfunction?
SWALLOWING DIFFICULTIES (DYSPHAGIA) - This is a 'normal' part of death and dying as the body shuts down.
CANADIAN CANCER SOCIETY - They are a valuable source of referrals and references. Peer counsellors can help you. They also provide specific disease-related information.
GERIATRIC ASSESSMENTS - This is crucial in preventing or ameliorating dementia symptoms.
FAMILY MEMBERS AND AILING SENIORS - What are your rights?
QUALITY OF LIFE AND END-OF-LIFE CARE - Where do you go for help? Get a geriatric assessment.
CONCLUSIONS AND RECOMMENDATIONS
CAREGIVING IN THE HOME - It is difficult and youare at risk for stress.
STRAINED FAMILY RELATIONS - Many dysfunctional families become worse.
CAREGIVING BY OUTSIDE AGENCIES AND SUPPORT WORKERS - Who you gonna call?
PLACING A SENIOR IN LONG-TERM CARE - what to take, what to leave,
RESIDENTS’ RIGHTS AND NEEDS - Bill of Rights
SIGNS OF IMPENDING DEATH
THE ONTARIO BILL OF RIGHTS FOR RESIDENTS IN LONG-TERM CARE - available on-line.
VISITORS TO FAMILY AND RESIDENTS IN LONG-TERM CARE - what can you take? What can you do when visiting?
FAMILY HEALTH TEAMS AND BIOETHICS
SUGGESTIONS FOR FAMILIES OF THOSE IN LTC - Be vigilant, visit frequently and at different times.
INDUSTRY ISSUES - Where are we headed?
SUGGESTIONS FOR THE GOVERNMENT