Tuesday, December 1, 2009
On our drive into Gravenhurst, I spotted a black road-kill squirrel. It rested on the double line in the centre of the road. Its little tail fluttered in the breeze. From across the road, we spotted turkey vultures. There was a mother and her hatchlings. They are the natural garbage collectors that keep our Muskoka clean. They flew across our path and almost hit the car in their efforts to find food in this dry August month. One never knows what kind of wildlife will fly out of the forest.
When we went in to visit Dad, it was noon and he was sleeping. We did errands, casually puttering around the town. What a relief not to have to work. It was incredibly stressful working in April and May and looking after Mom. Thank goodness the memorial service was over. I began working on Dad’s obituary and announcement. It was good to prepare. I found it lovely looking through papers and uncovering the facets that made up my father while he was still a sentient human being. I had forgotten much and came across a great deal more I had not known. The grieving process is complex, but necessary.
Today was a really bad day. When we returned, Dad was awake and in a foul mood. He adamantly refused to put in his hearing aids, put on his eyeglasses or pants, eat his breakfast, or take his meds. At each request he would say, “It’s not mine. It’s nothing to do with me.” He refused to use his walker. He knew he had lost all control of everything around him and in a juvenile temper tantrum he decided he would not co-operate with anyone. He sat on the edge of his bed repeating his mantra, “It’s not mine. It’s nothing to do with me.” It was a clever statement and we still use it often when angry and frustrated.
As his agitation increased, it became increasingly difficult to work with him. He understood little. His hearing aids were not working. We thought it was the swelling of the ear canals. We were flushing his ears out weekly, but the wax damaged the hearing aids. He could not figure out how they worked. He would fiddle with them and turn them up so loud they squeaked. It drove people nuts at his dinner table. One person complained and so they changed his table to a more amenable group. It broke Dad’s heart. He was very angry that someone had complained. Mom and Dad had spent much of their lives looking after others; my older aunts and uncles, acquaintances--as they became unable to do things for themselves, my parents pitched in.
Dad would often wander around after nine p.m. and later after most of the residents were in bed. Dolly called for a staff member to come and look after him. Bless her, for her help. He had gotten up and was in the hall in his undershirt and boxers--without his walker. He must have used the railing on the wall for support. He got himself into the sitting area at the end of the hall and was in a chair, unable to get up. Dolly said it isn’t the worst thing she’d seen. She had found another resident in the same sitting area wearing only a shawl. Dolly sent her back to bed. Dolly was such a good person looking after some of these lost souls. His insomnia was having a bad effect on his routines and the ability of the retirement home to take care of his needs. I constantly racked my brain to figure out how to resolve these issues.
We had been scheduled to go to PEI to see my actor-son in his latest production, Anne and Gilbert: the Musical. I could not go and leave Dad alone. Yet again my parents’ ill health made me choose caring for one of them over seeing to my children’s needs. It was too far away if something happened to Dad. I had to advocate for many issues for my father. This was not the time for me to be away, but we hadn’t had a real holiday in two years. I should have taken the break. I was stressed beyond understanding. I was hoping that my family understood. Brian remained steadfast at my side.
Wednesday, October 21, 2009
By August, Mom had to go to Toronto for another appointment. It was in regards to her new tumour, number five. She refused to let me go along. By now my course was finished and, being a teacher, I was available if needed. She was adamant. I should have been stronger and fought this. She could not hear properly and was under stress. At age seventy-nine, she had an unfailing trust in doctors, who tended to gloss over details and use acronyms that only they understood; they treated elderly patients as if they were younger and had perfect hearing and cognition. The truth was that radiation and chemo has a profound effect on seniors who are already frail, and Mom was not offered statistics that took her age and condition into consideration. I should have been there to ask the questions that burned in my brain. One cannot move forward without all of the information.
The doctor told Mom that he was not sure that the chemo he suggested would work. She wanted to give it a try. I should had gone in with her and asked the questions we all had: treatment rates, survival rates with and without the invasive treatments, survival rates based on age and stage of life. Many people facing “the big C” cannot and do not process much of the information presented at the time it is delivered. They have information overload and need an advocate to keep information straight, take notes, and provide help in understanding the information. I ensured that I took notes when Mom phoned me with information. I kept diaries all the time, as did Brian. I kept on doing research on my own, but could not find anything on leukoplatia (I learned later, in 2008, that it was leukoplakia). “Cancer in the groin” was covered, but it did not seem to apply to her situation.
Monday, October 12, 2009
A selection of links related to brain tumours, cancer & dying
Sunday, October 4, 2009
We had a grand time. Some friends popped in, and we met some very nice people.
Many thanks to Audrey, of Book Stop, who made me feel welcome.
They have two locations: Barrhaven and Orleans, near Ottawa.
Book Stop in Orleans, Ontario (on)Name: Book Stop
Street: 1224 Place D'orleans Drive
Orleans, on K1C7K3-
Phone: (613) 841-7897
Wednesday, September 30, 2009
My well-earned break was to be short-lived. While I was out presenting my workshop, Robin had phoned the hotel and left a message to for me to call. Brian, arriving at the hotel before I finished my presentation, returned the call to Robin. As I walked into the hotel room, Brian gave me the news that Mom had passed away.
I never felt grief, just a giant sucking in of breath. I focused on what needed to be done next. We took a moment in Toronto to have a good lunch, make plans, and draw up checklists of things that needed to be done. It was surreal.
Apparently, on Friday, Robin had taken Mom to the hospital in the evening. A couple of neighbours had gone with them but came home later that night to check in on Dad. The hospital could not do anything for Mom, and Robin brought her home at about three-thirty a.m. on Saturday. They went back to sleep in their exhaustion, Mom and Robin sleeping on respective couches. They woke around seven a.m. and talked a bit about grandkids, and so on. They had good conversations, in between Mom’s naps, and laughed over good times. I missed that opportunity. I have to learn to let this go and deal in the present.
Mom’s breathing got more and more shallow. Eventually, around nine a.m., Robin looked over at her and saw that she had stopped breathing. Dad, on prescriptions for infections, was quite out of any concept of reality. He became very upset and told Robin to get her body out of the house. Poor Rob had to hustle, with the aid of his cousins, to find an undertaker to remove Mom’s body. Dad was emotionally distraught, Rob said, and could not deal with all of the things he needed to deal with. He did not recognize Mom’s body as his dearly beloved late wife. (Dad was suffering from prostatitis, which we did not know at the time. He was incoherent much of the time and was having difficulties getting to the bathroom.)
I must go back in time to explain this next problem. In their will, Mom and Dad named my cousins (husband and wife) as executors. We are not sure why, since the will was redone in 1998, and Robin and I were adults at the time. These cousins live in Southern Ontario, and it is a fair distance to visit here, especially since they have a farm. Fortunately, they happened to be visiting in the area at the time. Robin and the cousins made arrangements to send Mom’s body to the funeral home and to have her body cremated.
Once at the funeral home, they signed the agreement with the funeral home. My cousins declared my father unfit to be in charge and took ownership of the problems. Dad certainly was in no condition to take care of these things. In hindsight, my brother and I should have simply signed the agreement with the funeral home and taken control. We had power of attorney for both medical and financial affairs. In the meantime, my cousins began acting as executors and, once they had done so, since Dad could not at the time, they had complete signing authority for all matters. This became a problem later when trying to remove Mom’s name from documents and put them solely in Dad’s name.
All of the arrangements had to be done between my cousins and the funeral home from this point on. We could not even take her remains out of the funeral home for the memorial service, as we were not executors. Our cousins had to sign a letter later, as executors, giving us permission.
By the time Brian and I arrived from Toronto, the funeral arrangements were made and the contract signed. My cousins and my brother had begun writing Mom’s funeral announcement, but they did not know some of the names. The obituary left out Mom’s dear adoptive sister in Lethbridge, whom I had not seen in more than twenty-five years. I felt bad--another mistake for my hindsight list. I had to take over this job. The next day was Mother’s day, and I had an obituary to write. In hindsight, we should have postponed the small family funeral until a later date, rather than having it a week later.
Sunday, September 27, 2009
After checking with the dietitian, we figured Dad had eaten only about one-quarter to one-half of two meals in two weeks. They kept careful records and weighed the patients regularly. He was refusing most meals. Anorexia nervosa is a disease that primarily affects young women. DSM-IV-TR (APA) defines it as “a refusal to maintain body weight at or above a minimally normal weight for age and height.” It is a psychological disorder that has biological effects as the individual tries to manage or control his or her environment by controlling the amount of food he or she eats. This was Dad’s situation. I have seen it in many seniors due to many issues. It is a combination of lack of appetite and a means by which one can feel as if they are in psychological control. There was nothing to do about it. He would not have benefited from counselling, as he could not hear or cognitively process a therapeutic treatment or process.
Saturday, September 26, 2009
One friend, on her way to Gravenhurst for a wedding, popped in to see me. We had never met, except on-line.
Jacqueline, the store owner, set up a lovely display in the window, as well as a table with an antique, red velvet chair for me. I felt like a queen.
Thursday, September 24, 2009
It is important to be an advocate and to ask questions on behalf of your loved one. I was unable to function well enough to do so. It haunts me to this day. I was unable to get to speak with the doctor, who I wasn’t sure really knew or understood my father and his care. There was no treatment plan I could perceive. For someone in palliative care, there is a pattern of eventual physical and biological deterioration that is predictable. This must be anticipated, prepared for, and managed.
Dear Brian advocated so much for us. He visited the staff and spoke to the charge nurse, dietitian, and other care staff. Brian had been advocating for Dad’s food preferences. Tania called us from the LTC home that day. I was glad I was there to take the call. I could be replaced at school, but I was Dad’s only daughter and legal advocate nearby. Dad had crawled out of bed and fallen onto his knees. It was their responsibility, according to the Long-Term Care Act, to inform us. I thanked them. They assured us he was fine.
Dad was unable to understand the function of the call help button and would not wait for help. He often had to urinate every fifteen minutes or so. Long-term care was not staffed to allow for a senior to have such a frequent toileting routine. But it is demeaning to lose control of one’s bodily functions. There is a huge struggle to hurriedly get up out of bed and go to the toilet. It was a horrible situation. I still have no answers to this issue, with Ontario government standards limited to three hours’ care per resident per day.
No amount of discussion with the nurses would increase his pain medications to an acceptable level. I kept asking for more pain relief, but I truly did not know what was indicated, still had not spoken to the physician, and was getting tired of fighting.
Since his agitation was so extreme, they had put him on a drug to calm him. I think they said it was Respiridol, but it was intended to take away his pain. He chewed the tablets. I did not know what the drug was made of, nor what it was for. I had not been told what drugs he was on, nor given any indication of his pharmacological treatments. On the web it said this drug is contraindicated for those with dementia. There were risks involved, but it calmed him and I ignored this issue. My brain was full and I had to choose my battles. We were not informed of its intended or regular use. As alternate decision-maker, I would have liked to sit down for a talk with the attending physician, but that was not to be. I later filed a complaint, which I hope made a difference to other residents.
Wednesday, September 23, 2009
The ravages of age were familiar to me. My elderly aunts and uncles had passed on. Listening to my parents describe aches and pains in their seventies, I had myself realized aches and pains of middle age in my forties. Getting up in the morning could be slower than before. Mom and Dad had fought arthritis, cholesterol, and weight issues since their fifties and were pretty careful with their health. They would work long hours at events in town supporting the volunteer network. They slowed down in their sixties and I began to monitor them more and more during this time. There were clues that their visits to the pharmacist were becoming more serious by the sheer volume of medications they were on. Mom had lactose intolerance and debilitating colitis: a stress-induced diarrhea. She was an extreme worrier, and it resulted in her having to wear adult diapers when driving a long way or going to church or choir practice. The smallest stress would send her off to the toilet. Dad was taking eight pills a day, a polypharmacy situation that put him at great risk.
Mentally I had already looked ahead to the last chapter in my parents’ lives after my first husband’s mother developed lung cancer. She was a heavy smoker, so it was not a surprise. I read all I could at that time and began to understand the philosophy of Elizabeth Kübler–Ross’s five stages of grief: denial, anger, bargaining, depression, and acceptance. I had developed such strong bonds with my mother, I knew we could honour the past while accepting the present. I could foresee that time coming, as my parents began recognizing and showing signs of the aging process. Slowly they began giving up the physical activities they could no longer manage: mowing the lawn, shovelling snow, raking snow off of the roof, stacking the cords of wood they needed for their wood stove, and so on. They began to hire people for those purposes.
Dad found caring for his precious garden much more difficult in his seventies. His knees were ravaged by arthritis, he was in pain, and needed much more sleep.
I, too, was beginning to prepare for the last chapter in my life. I had always been an active member in my teachers’ federation, serving as executive member, secretary, treasurer, and branch president. I enjoyed trying to give something back to my profession. I took student teachers under my wing and mentored them while contributing articles to educational publications and planned and presented workshops on curricula, special education, and technology. Finally, I joined a professional organization (Ontario Association for Supervision in Curriculum--OASCD) and began doing work with this provincial group to help plan workshops and organize conferences. It was exciting work, planning, preparing, and facilitating the professional development opportunities so crucial in the field. I took the principals’ course in order to find new challenges beyond the classroom. It was rewarding work and gave me great joy.
I had been divorced for ten years. This kind of time commitment gave me a purpose, especially as my children found their own friends and their own interests. I was content to carry on with my personal and professional goals. One December, I met a special man. The week we met, we were scheduled to visit Mom in Muskoka. She told me to bring this dear man. Imagine driving five hours in a car with three teenagers. He is not a tall man, and I am not a tall woman. My children are fairly tall, and when we would stop on the way for a bite to eat, we looked like a peculiar family. But the visit was a success. After a busy spring and summer, we became engaged.
Brian, my second husband, is a delightful man. He was in the middle of a successful business career, with much responsibility related to the transportation industry. He has an open heart, a genuinely honest disposition, and is loved by almost all. I adored seeing him take off for work in his business suits. He looked like the businessman he was at the time. His generosity extends from the financial gifts he made to my struggling children while in university, to the generosity of spirit that moves him to do Meals on Wheels in his retirement in this community. My mother always called him “a pet”!
Mom put off her surgery until after our wedding in 2002.
 The federation became a union in 1997.
Monday, September 21, 2009
Don't miss my book signing at Gravenhurst Book Store:
Saturday, Sept. 26, 2009, from 2:00 to 4:00 p.m.
Also available at Penny Varney's!
You may balk at the snow in the photo, but it is last year's picture...the only one I had.
Thank you to those who have helped to spread the word. It is important to have information about the health care system from some one who cared for parents.
It is a much different proposition due to access to information laws.
I hope to see many people there. This was a labour of love, and very cathartic.
I learned so much and wanted to put in in print.
Sunday, September 20, 2009
It is possible to live and die with dignity, but it isn’t always certain. My mother denied to all that she was either ill or in pain. She died at home. My father raged angrily against his brain tumour.
I chose to document this story of caring for my ailing parents, as I could find little in the literature to help me on my journey. To keep ourselves organized, and to keep track of my parents’ appointments, our trips to Toronto, their cancer treatments, and their prognoses, we wrote every appointment on our calendar. Eventually, I created a journal.
Journalling is a highly recommended means by which a writer can come to terms with the events of her life. An autobiography is an excellent way to capture a life well lived. Some new studies have reported the benefits of writing a memoir to come to terms with your own story. There is healing power in such a process.
Dr. Gary Reker’s (2002) work on spirituality and his autobiography, as well as the work done by Pennebaker (2004), convince me that the writing process is a healing one. In Writing to Heal, Pennebaker cites research that demonstrates reduced visits to medical professionals for those who disclose their emotional trauma and try to make sense of it. Writing about one’s emotions is associated with general enhancement of immune function and reduced physiological indicators of stress. His research finds that one’s mood and behaviours change after writing, and that expressive writing can help those dealing with stressed interpersonal relationships. His work gives the reader many ideas about basic writing technique, constructing and editing your story, changing perspective, and experimenting with context. Certainly, when teaching writing to my intermediate students, we found much healing in working through the writing process in fiction, both poetry and prose. Natalie Goldberg’s Writing Down the Bones gives terrific strategies for opening up your mind and helping the words flow off the pen.
I was inspired to write this memoir in order to share my stories with others. These are lessons that I wanted to share. While my parents were fighting for their lives and trying to deal with the vagaries of age, I looked for human and physical resources through the Internet, sought out various counsellors, and contacted the Canadian Cancer Society. I scoured bookstores and found few resources. This book outlines the human and physical resources, the personnel, and the publications I found during my journey; and the frustrations of the bureaucratic process of dealing with health care professionals, long-term care facilities, and even extended family members.
These difficulties were compounded by my own diagnosis of clinical depression. I found during my research that as a woman going through menopause, with symptoms of stress, I was at great risk for depression. I am now receiving hormone therapy, after a saliva test showed that my estrogen levels were low and that my progesterone was minimal. This imbalance, due to surgical menopause in 1995, resulted in menopausal symptoms that included depression.
I worked hard to advocate for my parents, while working full time and caring for my adult children. After facing depression, a year on antidepressants and a focus on healthy eating and daily exercise have me feeling better. Depression is a difficult disorder, as it is unspoken, unnamed, and often undiagnosed. Many things can trigger it, including adolescence, hormonal changes, moving through life passages, a new job, or perceived job stress. I went into a mild depression and sought counselling after my divorce; having been in a marriage of sixteen years, it was a shock. I used the Employee Assistance Program to find someone to talk to about the issues I had been facing. The research says that depression can return with new stressors, such as work pressures, perimenopause, worrying over young or adult children, ailing parents, or bereavement. I have done extensive research on it to understand it better. It was quite a learning experience.
I had a fairly normal family life. Adopted as an infant into a loving working-class family, I had the usual teenage angst. A large amount of my leisure time was spent singing in choirs, attending church, and participating in a close, extended family network with cousins galore. I was always a good student and had no trouble in school. My parents really wanted me to get a good education. They encouraged me to go to university. I pursued a degree in Early Education from Ryerson, married in second year, and graduated pregnant. I earned my B.Ed., and then an M.Ed. Reading, writing, and research have taken up a better part of my life. I have always liked to ask questions.
Here we are: a loving, ’60s family at Robin’s first birthday. He was adopted at two weeks of age. I was adopted when I was six months old in 1957.
My younger brother, Robin, was adopted when he was two weeks old. Robin now lives in British Columbia. He works in Northern Ontario as a miner for two weeks at a time, spending the alternate two weeks on Vancouver Island where he lives with his son. Robin is a big man. Not tall, but a sturdy man of Scots descent. His dark, curly hair usually needs a trim. He is a “go to it” type of person. He works hard as a miner. We never talked much, not until our parents’ ill health, but we love one another.
I was very proud of my mother. She was a very strong and determined woman. Her father died when she was fifteen years old and she dropped out of school to work and supplement the family income. Old photos reveal a beautiful young woman, especially the old, old black and white photos dating from 1940--obviously taken when she and Dad were courting. She worked and played hard all of her life. At the age of fifty, she learned to use a computer in her office. For twenty-seven years she managed a Rotary Club of 500 members with aplomb and panache. She was one of my best friends, despite living in separate cities. She listened to me and gave me unconditional support. We spoke every few days.
I did not talk to Dad very much. In his later years, he couldn’t hear me on the phone. A strong, silent type, with many tools and a well-appointed workbench, he always had a project on the go and seemed to be able to fix anything. He loved his plants, his goldfish pond, his pets, and his lovely waterfront home. In my youth, he and Mom attended every track and field meet, every concert, and every other important event in my life. I always felt loved unconditionally and totally supported all my life. My parents were always there for me. I suffered little, other than having a huge lack of self-confidence.
We were a busy family that lived in the bustling inner city. I grew up taking the subway everywhere. Summers were spent in marvellous Muskoka. I adored the lake, the water, and the wind. We built a cottage, which still stands nestled in the trees by the lake. Dad loved his cottage. In the summer he would leave early on a Monday morning to nip into the busy city, and we would meet him at the highway when he returned on Friday nights for the weekend. In 1991, Mom finally retired after Dad had lost a series of jobs in the construction bust of the eighties. They were both sixty-six years old.
Thursday, July 23, 2009
B.A., B. Ed., M.Ed.
Living and Dying With Dignity: A daughter’s journey through Long-Term Care
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.
Suggested interview questions
- Tell me why you were inspired to write this book?
- When did you realize that your father was as ill as your mother?
- How is a caregiver’s health impacted by the work demanded of caregiving?
- What is happening to the sandwich generation as aging parents demand and require major support?
- What are the most important lessons you learned while caring for your parents?
- The Ontario government has been spending money in areas such as new Nurse Practitioners, Aging at Home Projects and Family Health Care Teams. Do you think these solutions are working?
- Many caregivers are facing ill-health, as you suffered from depression. What advice do you give to caregivers?
- What recommendations do you have for the government?
- What is the difference between Long-Term Care and Retirement Homes?
- Why is it so important to identify the symptoms of dementia and/or delirium early on in the process?
- What questions should patients ask of their physicians and oncologists?
- The final section of your book contains important conclusions about senior health care and reflects on some of these initiatives. What are some of these ideas?
Information about aging in Ontario
- With an aging senior population, Canada has few geriatricians. Typically, Family Physicians are untrained in geriatrics.
- Those who work with seniors do not necessarily have training. Personal Support Workers (PSWs), who do most of the work in LTC and Retirement homes may have only a 14-module training course. They need to be regulated and monitored as do those who work with young children.
- Many family members do not know how to access services. Many are as ill as their family members. Many seniors are themselves caring for ailing seniors, with little access to home care (4 hours per day in Ontario).
- Hospitals are places for those with acute illnesses. They do not deal well with those who are frail. As a caregiver, expect that you will be of benefit to them if you are present at their bedside. There is much to do. It is important to advocate for them; record treatment plans, medications, test results. Be proactive. Ask Why, How often and How much? With 3 new medications, seniors are at high risk for complications. About 50% of those with dementia are at home. Two-thirds of these remain undiagnosed. Dementia, often confused with delirium, is under diagnosed in many seniors; both are treatable and can be ameliorated.
- It is estimated that dementia is present in 23% of seniors aged 85-89, 40% of seniors aged 90-94, 55% of seniors aged 95-99, and 85% of seniors aged 100-106.
- Advice for caregivers and family members
- Go to doctor’s appointments with your family members.
- Be prepared with questions about treatment plans, treatment side effects, the impact of treatment on one’s quality of life, as well as survival rates from the treatments.
- Keep a medical diary of symptoms and treatments and take notes.
- Understand the difference between dementia and delirium.
- Balance your social and emotional needs with those of your parents.
- Caregivers must act in the interest of safety in terms of health, nutrition, and access to the wheel. It is estimated that 20% of dementia patients are still driving.
Barriers to health care
- Lack of patient advocates, like the Alzheimer’s Society FirstLink.
- Geographical inequities across the province.
- Lack of qualified personnel from geriatricians, nurses, to PSWs.
- Health care relies on unqualified community supports: churches, neighbours, rather than hospice volunteers, and PWSs.
- Ailing spouses may be unable to provide adequate care resulting in Elder Neglect and Abuse. This can be prevented or ameliorated with CCAC intervention.
- Myths around pain and pain management
- Family issues - dysfunctional families
- Communication deficiencies or disorders: language barriers, auditory, visual, cognitive disorders
- Denial of health issues by seniors, family and friends
- Bias or prejudice - i.e., inaccurate statistics: women die of stroke and heart disease
- Fears - of diagnosis or treatment
- Patients who do not speak English
- Poor or ineffective treatment plans
- Cognitive disorders - delirium, dementia,
- Mental health issues
- Mistakes in diagnosis
- Attitudes: i.e., discrimination, being treated as incompetent, expressive or receptive language disorders
- Primary Care workers who speak down to patients, or use acronyms, or complicated language
- Wait times, lack of staffing, crowded hospitals where seniors do not have enough support, are immobile, and may not get all the nutrition they need.
Recommendations for the government
We need more geriatricians. End-of-life is a much more complex stage of life than pediatrics. Every Primary Care staff member needs training in geriatrics from the physician or nurse to the PSW.
We are short-staffed in Primary Care
Delivery of Health Care in Central & Northern Ontario requires as infusion of money and beds, not less.
Regulation and Registry of PSWs. In profit and non-profit care we allow personal support workers to provide intimate care to loved ones. To work in Day Care you need an ECE degree, yet PSWs may or may not have a certificate from a college. This must be changed.
Patient Advocates. Each senior should have a patient advocate to support the entire family, not just the patient.
Special Education teacher for over 25 years.
Wife, mother of 3 adult children, one granddaughter
Board of Directors member for FYCSM.ca
Workshop presenter to elementary, university and adults
Internet expert and published author on education, web design and internet safety.
Consultant with the North Simcoe-Muskoka LHIN’s Aging at Home Project
Trained Hospice volunteer
Trained Volunteer Crisis Responder
Peer Health Educator with CHAP -www.chapprogram.ca
Wednesday, April 22, 2009
Jennifer, tell me why you were inspired to write this book?
I gave up a great job and career in Ottawa, having lived and worked there for twenty-five years, to move to Muskoka and provide care for my failing parents. They were both fighting cancer. I felt helpless, as I juggled the responsibilities of motherhood and caring for ailing parents. I know I am not alone in this situation. Many caregivers are adult daughters who sacrifice their careers, and juggle their lives meeting the needs of aging parents. I did a great deal of research and wanted to share the lessons learned.
When did you realize that your father was as ill as your mother?
My father’s brain tumour was diagnosed in 2003 after a grand-mal seizure. He, too, had surgery and was sent home. He had mobility issues, his arthritis compounded the effects of the brain tumour. When I visited my parents in March break, I realized that they were both going downhill. I know Dad exhibited signs of delirium. Mind you, I didn’t know what dementia was, and at the time I did not realize the significance or the difference between dementia and delirium.
What is the most important lesson you learned while caring for your parents?
My mother was adamant about going to appointments alone, and this was a huge mistake on my part. She did not hear well, she was ill fighting cancer, and did not comprehend some of the terminology. Mom was unable to advocate for herself: asking questions about treatment plans, treatment side effects, the impact of treatment on her quality of life, as well as survival rates from the treatments. At the time, I was as unfamiliar with the health care system as she was, and neither of us knew our rights to having this kind of information. While I kept a medical diary of her symptoms and treatments, I should have been adamant about attending appointments with her and assisting her in getting all of the information, and taking notes. She was afraid to ask questions and all she knew was what she had heard from friends, the media and what the oncologists chose to tell her.
The final section of your book contains important conclusions about senior health care. What is your most important idea?
Firstly, that since we regulate those who work with children we really ought to regulate all those who work with seniors, as well. There is much we know about geriatrics, a much more complex stage of life than pediatrics. In profit and non-profit care we allow personal support workers (PSW) to provide intimate care to loved ones. To work in Day Care you need an ECE degree, yet PSWs may or may not have a certificate from a college. This must be changed.
Saturday, April 4, 2009
For my mom it was potato salad. When she was dying, she asked for it. I was too stressed to figure out how to make it because the myth was that only my grandma made it right!
The local deli, despite it NOT being tourist season, made some specially for us. I was so grateful. I drove over and picked some up after work. She ate a tablespoon, but it was something I accomplished for her. She did not want to accept help. It was difficult for her - she'd given to others all her life. She identified herself by this.
Today would have been her 84th birthday. I wrote her a poem:
Sunday, March 29, 2009
With great delight I attended a day-long session for hospice volunteers Live~Love~Laugh - a workshop for hard-working volunteers.... I am taking the Foundations of Palliative Care course and this is the training all of these volunteers fo through. It is am amazing course. We know so much about managing death and the dying process. The day was such a positive experience for all the volunteers who attended. It is primarily women, who tend to be the caregivers, but there are a few male volunteers.
Many volunteered to set up tables, and create beautiful displays of, for example, the door prizes.
The keynote speaker in the morning was Jane Galbraith-author of Baby Boomers Face Grief. Jane is a nurse and a medical consultant, who is giving workshops on managing grief in middle age. While she no longer does bedside nursing, Jane does medical legal expert nursing opinion consulting, and also sits on the CPP Disability Tribunals as a medical member.
Many of us are not familiar with the grieving process. I have found, in my research, that in this the sandwich generation, it is tough managing careers and caring for ailing parents. Once they pass over, our work begins. And work it is. Her book is a good read for those of us who face bereavement at this stage of life. It is a process that has a terrible impact even if it is a 'good' death, or an anticipated one. My father, we knew, was palliative but this does not make it easier. In the case of a sudden death of a parent, we are suddenly orphans in a strange way it is a passage for which we are not prepared.
It was so much fun, since I was able to trade books with the other authors who were there! Muskoka is full of authors and workshops faciliatators.
In addition to Jane, Elke Scholtz was there to lead a workshop on Loving Your Life. She does creative workshops on this topic and is working on her Master's using expressive arts. We know that such therapy does wonders for all of us at all ages. I eagerly look forward to reading her book!
I cannot thank the volunteers enough for preparing us a delicious soup and sandwich lunch. The decorations were beautiful on all the tables. I truly felt welcomed and appreciated. The conversations I had with participants, as well as presenters, helped me see the caring, loving individuals with which we are blessed in this community.
One of the fun things was performance by the Bracebridge U.C. Bellringers. I caught a photo of the press getting photos! How wonderful to be honoured with their delightful music.
Monday, March 16, 2009
I taped myself in 3 parts:
Shelley McLean between 5 and 6am. Shelley has the news headlines, entertainment and health news, ...
Wednesday, February 11, 2009
To explain where I am living is hard – as it is a cottage off of the house. It said that there is service here already. That takes some explaining. Then, I have to phone from school, during limited break times, in between yard duties, and there isn’t a lot of time to sit on the phone waiting for Emily, Bell Telephone’s infuriating robot, to send me to the right person. It is a relief to be able to talk to my husband when I wanted to!
What was terrible is trying to cancel or change services for my late mother, and my father, with dementia, when he moved to a Retirement Home and then LTC. The frustrations are endless. I simply ended up pretending to be my mother, at one point. I had Power of Attorney and Dad was beyond talking to Bell. I wouldn't put him through that.
Tuesday, February 10, 2009
Bullying in the workplace is an issue facing an increasing number of workers (Bredeson, 2003). It is a major cause of physical, emotional, and psychological issues for employees and exacerbates an already demanding emotional burden on the part of a caregiver like myself. In a familiar pattern of emotional abuse, I received an e-mail from my principal pointing out more mistakes that I had made at school; things forgotten, things she needed me to change or fix. I knew I was not working at my best and I realized that I could not face this work situation. It was intolerable. My father had to come first.
When we have stress it is like filling a glass with liquid. Each time a stressful incident occurs, a little more is added until it fills us up and we soon overflow. This is what depression does to us. We develop inertia and cannot tackle anything that needs doing. Despite needing to complete numerous tasks, we cannot fight the inertia. Fear of failure secures our feet to the ground. I felt threatened as I perceived that my boss was questioning my methods, my beliefs, my timetable, my work with the special needs students, and my commitment to her school, her students, and her community. I was physically, socially, and emotionally exhausted and felt defeated. I realized that I could no longer face her anymore with my increasing self-doubts reinforced by her critical eye. In my readings, I had found that those who were depressed faced increasingly low levels of self-esteem. People like me, who were juggling home and work, despite having previously achieved success, sustain high levels of self-doubt.
I read an article, published in our local paper, that related loss and bereavement issues to a loss of self-esteem. It was an article published by The Caregiver’s Support Network, which was partnered with our local Hospice Group. If only I had known that they existed! They abound in Canada, but I was unaware of this and unable to seek help. I thought I had to do it all on my own.
I tried to be tough. I tried to shoulder a burden that was unsustainable. Daily I questioned myself, as a wife, daughter, and teacher. I was having doubts about my teaching ability and my purpose in life. I knew Dad wouldn’t last too much longer, and wondered what I would do with my life then. This article talked about setting realistic goals. I had not been able to do so. They talked about a sense of fear, which indeed I possessed. I wondered if I was good enough to do the job I had been assigned. I could not make decisions daily and juggle thousands of lesson plans; I was unable to decide what to teach--or, more to the point, what not to teach. Ontario Ministry curriculum expectations are so great that educators have a hard time meeting them all, while integrating learning, focusing on the big picture, connecting learning to students’ personal and community life, and all the while differentiating curricula for special needs students. Our two-week fixation on the camping trip left little time to establish routines, set up classroom expectations, and dig into the multi-layered literacy, numeracy, history, and geography units buried in our textbooks. We were interrupted more than daily for bulletins, important assemblies, PA announcements, and changes in plan. It was unnerving.
For me, just getting dressed in the morning involved decisions I was unable to make without forcing myself to keep moving. The article went on to say that low self-esteem could manifest itself by complicating the grieving process. I was grieving my mother, and the father whom I used to know, at the same time. This kind of stress could result in substance abuse, risk-taking, thoughts about risk-taking, suicidal ideations, negative mind chatter, fear of new situations, and distancing oneself from family and friends. I checked positive for all of these symptoms.
I spoke with an absence management representative at the board office. I told her all that had gone on in my life. She suggested I go back to the Employee Assistance Program (EAP), despite my failure to find an adequate counsellor last June. (I spoke once to a counsellor on the phone, and she suggested, after forty minutes, that I really didn’t need to talk to her again.) My contact promised she would speak directly to her contact with the EAP Management group. I was glad I had reached out. She advocated for me and ensured that I spoke to someone who would guarantee that I had an experienced counsellor who would guide me through this chapter in my life. What a blessed relief.
I began to see this counsellor weekly. He helped me work my way through the issues that I was juggling. He complimented me on how well I was handling the stress. I had lost all perspective. I laughed a great deal and tried to step back to look at some situations with amusement. This made life endurable. He assured me, after I told him my previous experience with counselling, that I would not be left high and dry this time. I had lost my peer support system and social network by moving away from friends. I felt so much better; now I had someone in my court other than my beleaguered husband and my children, from whom I had unconditional support. As I talked through my issues, I began to realize that my priority had to be me and my dad.
My father required increasing amounts of support from us. While the Ontario government has a plan whereby employees could take six weeks off from work to care for a family member in palliative care, it is leave without pay, and would cost me pension dollars. I had taken time off work before beginning my teaching career, and had little enough pension as it was. The penalties for a shortened career due to child-bearing profoundly impact mothers in their retirement years. In addition, one needs a letter from the doctor stating that the patient has less than six months to live. How could a doctor predict this?
With Dad’s ill health and current deterioration rate, I thought that maybe he might have had two weeks left, but it was hard to tell. I had little choice but to take some sick leave now to try to look after my dad and myself. I had to call in sick. I was determined not to let my work determine or limit my ability to care for my father. I would never regret the decision to move to Muskoka.
Until now, I had enjoyed going to work. It took me away from my concerns. It helped me keep life in focus, as opposed to peering into the valley of the shadow of death. I felt that I had much to offer with my background and experiences in dealing with many types of students of varying abilities, disabilities, learning styles, races, colours, and creeds.
My mental health was the most important issue right now. I was truly suffering from a difficult work situation: a new school, new boss, and new culture. My students were delightful; my colleagues had remained supportive and understanding. They lauded me in my efforts. They listened and helped. But despite this support, I could not face work anymore. I felt devalued and unrecognized. I had had enough. I felt very strongly that God had something else in mind for me.
I decided to give up my career and my teaching practice. I held fast to my faith, determined to retire as soon as was possible in December when I turned fifty. As I drove past each school, with a schoolyard filled with laughing children, and school buses motoring on down the road, the regret at ending my career left me feeling like a failure. The shadows loomed in the dusk as I faced my demons.
Brian continued to go in and feed Dad breakfast, while I tried to heal myself and “look after me.” This was the advice many, many people had given me based on their own experiences. I had always agreed with the flight attendant’s advice: to demand that mothers put the oxygen mask on themselves first, and then their children. I was drained of energy. I found it difficult to begin any tasks, let alone finish them.
We were slowly getting the house in order; it began to resemble a home. I found solace in cooking and going back to being the homemaker I once was when my children were in their early childhood years. I began nesting. I told my counsellor that I wanted to hibernate for the winter. I wanted to cocoon, eat better, drink less, exercise more, and get myself back in shape.
After each afternoon visit with my father, I came home either numb or in shock. We would often go out to dinner, as preparing a meal was beyond us. At times I had an immense sense of gratitude for living in this beautiful place and surrounded by nature (tourists having gone home for the winter). At other times I did not know how to manage my new reality: that of homemaker/caregiver. I ate a lot to keep my hands busy, and drank just enough to be able to sleep. One glass of wine would lead to another until I could not feel the pain anymore. Something would give if I did not stop and take it easy.
Old dreams die hard. I had given up the notion of being a principal here in Muskoka. I realized that once retired, I could not go back to delivering workshops, either. They want current practitioners to deliver workshops. I could not do so. Finally, we had found a good doctor. He worked in a practice with a drop-in clinic and, while I had put off looking after myself, he seemed to be able to help me. He asked me several questions and came to the conclusion that I was clinically depressed. Basically, my neurotransmitters were not firing properly, and it was the fight or flight response to my stress that had sent me off into a tailspin.
I could not go on this way, worrying about school, my father, and our new home. My physician prescribed anti-depressants. I was not sure what they would do to me-- many drugs have side effects--but I knew there was something wrong and agreed to take the drugs. The first lot gave me headaches. I could not abide the headaches. I knew one had to start them slowly with a half dose, but I also knew there was something wrong with me that I could not fix with sleeping pills, exercise, or relaxation tapes. The prescription cost $117. Thank goodness for my drug plan!My doctor gave me a medical note to stay off work for a month. I felt incredibly sad, but quite relieved. I could not live with the workplace stress and the angst I felt at having to face my principal feeling like a failure. I could retire in December at the age of fifty with an early retirement penalty and a huge reduction in my income. I believed that my mental health and my ailing dad were worth more than just money. I filed the papers. As the old ad said, “I am worth it.” I had 130 sick days that I had brought with me from Ottawa, and did not have a history of being ill. It was time to use those days. This past year had sent me over the edge. I was travelling at top speed down a slippery slope, headed towards disaster. My teaching career was over. It was a hard life passage to face.
Saturday, February 7, 2009
But it was with great excitement that I went to our local library, in Port Carling, one of My Town Monday posts, to see the book featured on the shelf.
A friend in LTC has been passing some on. A friend of hers said she, "couldn't put it down!", which is great to hear! A memoir is a difficult thing to write. You try not to be too sappy, especially with this topic, or to depressed, despite being on anti-depressants at the time. I loaded it with humour, since "laughter is the best medicine" and we laughed at our antics, and my dad's, all the time.
I did so much research, and included a glossary and acronyms page to help those in similar circumstances. For those going through the health care system, this will help them navigate. Another target audience: those working with seniors at home or in institutions, or those in palliative care. Students in the various industries would benefit from a family member's point of view of the health care system. My main target was family members in similar situations, however.
Thursday, January 1, 2009
Despite the stress of the season, and a downturn in the economy and a slow summer for tourism, two local stores have been kind enough to take in consignment copies of my book.
Any book store can order the book in for customers, as well. My close family friend in Kingston is ordering the book, and has offered to host us if we go for a book signing!
While I will never make money on this book, I am glad that they are helping me spread the word about caring for ailing parents, caregiver stress, and Health Care patients who need a navigator.
I wanted to put out the information I learned from researching the issues I faced helping my parents navigate their way through ill-health to palliative care. Many have expressed an interest in reading my perspective.
I love Penny Varney's store in Gravenhurst. She carries a fair number of her own beautiful jewelry, as well as unique works from other artisans in the area. Penny is a wonderful member of the community. She participates in all aspects of the business community, as well as working hard to help close friends. She regularly donates her work to various groups and causes. I met her while singing in The Cellar Singers.
Right next door is The Book Store, where you can also find my book! It is so exciting launching this project. I can't wait for mt first book signing. I guess I will have to, though, as many of our neighbours have gone south for the winter!
I have been blogging about it. Sending information to family and friends. I have offered copies to local libraries, hospices, hospitals, and have had a great response. Those for whom I have offered a 'review copy' have been kind enough to purchase it to help me out. I printed 1500 copies.