Wednesday, September 30, 2009

Mom’s passing--Saturday, May 13, 2006

I took off for the university early in the morning to prepare and deliver my remaining workshop. I had heard no word from Bala and hesitated to phone them. The buzz was exciting. The conference was aimed at helping female teachers to take risks and incorporate technology into their curricula.

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

Hearing aids & diet

Dad played constantly with his hearing aids; his ears bothered him. He would try to adjust his aids. Today he refused his bath. His right foot was still painfully swollen. His eyes were itchy and he was on antibiotics for another urinary tract infection. It was a miserable life. His walker, missing yesterday, had been returned. The PSW told me that Dad had been up at night. He “tore up his room,” they told me. I did not ask for too much information. He was wandering down the hall. The charge nurse told me that they gave him some Ativan to calm him down. I thought I could have used one. I wondered what all these drugs did to him.

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

Book signing - #1

I had a great time talking with friends.
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.

What a pleasure to be at Gravenhurst's Book Store.
A dear friend of my parent's came in, since she had seen the ad, and I met some very nice people. One of my books we sold to a dad looking for a present for his daughter who is taking a Health Care Aide course. I was so pleased. the book really helps people like that, as well as other Primary Care staff, to work with failing seniors and their family members.

Thursday, September 24, 2009

Advocating for Dad - anorexia

anorexia--September 12, 2006

Another book excerpt

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

Part One: My Parents’ Final Years

2002: The Ravages of Old Age

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 K├╝bler–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,[1] 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.

(Terry Hrynyk)

[1] The federation became a union in 1997.

Monday, September 21, 2009

Book signing - Sept. 26

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.Penny & Jenny

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

Book Introduction

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.[1] 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.