Monday, April 2, 2012

Biography




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.

Table of contents: my book on Ontario palliative home care and LTC

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.

INTRODUCTION
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

REFERENCES
ACRONYMS--SENIOR CARE
GLOSSARY

Sunday, November 27, 2011

Book availability

My book is available from the publisher, General Store Publishing House in Renfrew. 
General Store Publishing House
499 O'Brien Rd. Box 415
Renfrew, Ontario. K7V 4A6
Call Us ~ Toll-Free 1-800-465-6072 / Tel: 613-432-7697


Also:

The Book Worm 76 Foster, Perth, Ontario
(613) 267-8773
Undercover Books,
171 Highland Street, Haliburton, ON, K0M 1S0
(705) 457-4241
Book Stop - both locations: Barrhaven & Orleans!
Available at
Muskoka
Penny Varney's and

Penny Varney & The Book Store in Gravenhurst
The Book Store 120 Muskoka Road South, Gravenhurst, ON P1P 1X2
(705) 687-0555

Thursday, March 31, 2011

Speech: stories in palliative care

Casino Rama hosted the June 9th, NSM Palliative Care conference, at which I spoke and signed books.







Saturday, July 31, 2010

Monday, Feb. 19, 2007

We began with coffee, chats and fond memories, again. I woke at 5:30 a.m.. I had had insomnia and went downstairs to have a change of venue. I prepared a fire, nestled into the couch with a blanket overtop. I found that listening to CBC Radio: Deutsche Welle, helped. News from Germany lulled me with their voices and gentle tones. The headphones meant I didn’t wake anyone. Eventually I fell asleep and that was some much needed extra sleep. I was tired. The cats went upstairs to wake up Brian, who ought to be in the kitchen making coffee. They knew nothing happened without my getting coffee and then I gave orders from the day. I am supposed to be ‘she who is in charge’.

We hustled to get ready, lulled into a slow start to the day. Robin and I went back to the funeral home. I remember the parting words the last time we were there. One of the people that worked there said, “See you again.” I laughed at the. I knew I would but didn’t want to. We arranged more of the details and told Cathy the date we had chosen. She took copies of the birth certificate, marriage certificate. She asked if there was a will. I had to sign a paper that she would submit to the government for CPP. They give the estate $2500 death bonus. It wouldn’t pay for his burial.

Robin, Cathy and I went downstairs to see the other urn we had had our eye on since mom’s passing. We noticed it and thought it might be suitable for dad. It was either that or the painted slate cover with two loons on a lake, a spring scene. Mom’s scene was that of winter. We looked at the one that has two hockey players carved into the side of the wooden urn. What I thought was that we could hang the two slate paintings in the cottage, after we intern them in the summer. We began to come back upstairs. I was in the lead, Robin and then Cathy behind me. We left the main room and turned the corner to go into the hall. I remember that I had my handkerchief in my pocket. I reached for it. As I walked something fell out of my pocket. As I walked I accidentally kicked it.

By the time we spotted it Cathy was beside it. She picked it up. She couldn’t figure out what it was. It looked like something you would plug a hole with. It was a Rolo.  It was peculiar, since I hadn’t brought any with me. Brian had brought some to dad last week. I had started eating them the night before dad died as I sat in his room. They were in the basket we kept on dad’s dresser, with his hymn books and bible and his straw bear. I was wearing a long jacket that I had not worn in months. We were a bit spooked. I couldn’t figure out how it had gotten there. I felt it a nod from dad – that we were headed in the right direction.

I popped in to see Michelle in the home. I received lots of condolences from folks in the LTC Home. Robin and I took a break and had coffee and bagels at Oliver’s. From there we went to pay dad’s bill at the pharmacy. He had had endless pills. This might save me getting a bill later. This is something I had been doing for months.

We needed to have us sign papers as administrators – the legal term being “application for state trustee with will”. Mom’s estate still hadn’t been tied up, but it should be fairly easy, since she had a will and it all went to dad. We needed to list all of dad’s debts and assets, send the bill from the funeral home to the bank, transfer ownership of the van, change the van insurance, house insurance, file taxes for mom and dad for 2006, then dad for 2007. Once all that was done the will would be settled and we could disperse assets and call it a day. Well, it will take months! We will need endless copies of the death certificate, many places would only make the required changes with an ‘original’. The funeral home arranged for the death certificates.

On the way home we popped in to get mail. There was nothing there. Rob offered to put up the obituary on the little bulletin board they have for such a purpose. It  is a good way to let folks know in this small town. I went in a told the postmistress and she expressed her condolences, too. Everyone in town knew mom and dad. I gleaned much sympathy. It was comforting.

Wednesday, January 27, 2010

Preparing the way--Thursday, February 15, 2007

An excerpt....
The phone rang at one a.m. The PSW had gone in to visit Dad, which they did hourly, and he seemed to be very badly off. They would touch his arm and speak his name. I am not sure why they would do this. Surely it would be better to leave him in peace, sleeping? He was unresponsive at this time. They thought I should know. They were not sure if I should go in or not. They were not sure how quickly he might leave us. They agreed to call me back at 3:30 a.m. and keep me updated. They did not call back, and I fell asleep at around three. I woke at seven a.m., hurriedly got dressed, had some coffee, and packed up a blanket, a thermos, and some other things.
            I had gone into the LTC at around eight-thirty a.m.; I saw the nurse in the hall and asked if she could tell me about the rest of his night. She hadn’t had time to read his file but promised to get back to me. I went into his room. He was lying on his back with an oxygen tube in his nose. Apparently, even when mouth breathing, enough oxygen got into his lungs as he sucked in the air. Dad was mouth breathing, with some rattling in his chest. There was paraphernalia on the table beside him; large Q-tips, a container of Vaseline; another of something like mouthwash. I had no idea what it was for. His eyes were one-quarter open, and he was unresponsive.

            I had brought in a big comforter, which was washed and returned later, along with several pillows and pillowcases. They proved invaluable later on. The PSW asked if I wanted him to go to breakfast or if I wanted them to bring in a tray. I knew he couldn’t eat. I had tried giving him some water on Tuesday and he could not suck from the straw. At this point he hadn’t had anything to eat or drink in twenty-four hours. He couldn’t eat or he would choke. From time to time he would hiccup. I thought he might have had a slight convulsion. He kept on blinking, but did not say anything. I dug under the covers and found a hand to hold. Surprisingly it was warm. His feet, remarkably, were not so swollen anymore. This was peculiar, as this condition had begun in the summer and had not gone away despite diuretics and his special socks.
            There was a call in to the doctor, who did not work on Wednesdays but would be in his office later. Were we not entitled to health care and visits by a doctor? How enervating this was! The RNs had no control without the authority of a doctor who did not even bother coming in to see my father. Finally, at ten a.m., we got an order for Dad to have injections of morphine, 2–5 mg every two hours, as needed. It was such a relief. They gave him 2 mg and he seemed more comfortable. Some workers thought he was not in pain, but I knew better. I knew him so well by now. He was in a hospital gown. I asked about the toilet seat, which had been changed for a higher one. He hadn’t been on the toilet for months. I asked if they could put a regular one on now, as I knew it would be a long few days and it would be easier if I could use his private bathroom toilet rather than going down the hall. The custodial staff needed a nurse’s order to remove the booster seat. The only public washroom that I knew of was on the main floor. This would make it very handy for me, as long as no one walked in on me! In fact, I nearly collided with a staff member when I came out of the door a couple of times.
            Audrey, from the front desk, came up to the room and told me that the Director of Care would be in to see me before long. This was good news. The PSW said to hit the call button if anything changed, or if I needed anything. They looked after me. They had put a radio in the room and they were playing some old songs. It was comforting. They shifted him at 10:30, but did not otherwise disturb him. I decided to go and get something to eat. Brian had poured me a coffee in his travel mug and I knew I was getting light-headed. I was scolded affectionately for not staying out and having a relaxed breakfast, but I wanted to get back to Dad. I had my second cup of coffee and breakfast sandwich in Dad’s room.
            I phoned Brian. He said he would come in around noon. Then the Director of Care (DOC) came in. She found us two chairs, and we settled in for a chat. She explained many details to me: outlining what I could expect in the next few days. She gave me some information I had not heard on mouth care, signs of death (see the final section of this book) and what they would be able to do for us. She said he could have his morphine injections until the end. It was a judgment call when he needed another injection, but I was the one in the best position to make that decision. It was far better to err on the side of comfort, rather than not enough. He had been aphasic (uncommunicative) for days. She explained about the oxygen. If they don’t have oxygen patients could panic because they cannot breathe. It was a comfort measure. She explained that the body could go three minutes without air, three days without water, and three weeks without food. Dad was two days without water at this point. Food was a distant memory.
            The DOC explained the symptoms of approaching death, all of which Dad had demonstrated in the past few days. His breathing softened and came and went over time. We could expect apnea (periodic cessation of breathing), Cheyne-Stokes respiration, cyanosis, and other symptoms.
            A Web site entitled, “As Death Approaches” says: “The fear of the unknown was always greater than the fear of the known,” and that was true. It was comforting to know what to expect, not that all of this had to occur. She reminded me to look after myself, to take regular breaks. She said to talk to him and let him know I was there. She felt for his heartbeat, which was weakening. She showed me how to do mouth care and told me that the mouth care he had received so far was excellent. (I was still not giving up my day job!) Staff came in and helped check his position. Dad was moaning and he was twitching. He could have been having more seizures. His forehead, where the tumour was growing, was a brighter red than elsewhere.
            Brian arrived to spell me off and I went home for a break. He phoned on his cell phone every few hours, while I supervised the roofers and chatted with them. At five p.m. the clouds began rolling in, and we were having snow squalls. I told Brian to come home. I had put a phone call in to my brother to tell him what was going on. He was out in his camp at the mine and hard to reach.
            I made it back to the hospital for five-thirty p.m. after picking up a Sub sandwich, a couple of juices, and potato chips--to hell with the weight management. At 5:50, the doctor arrived--he had decided to pop in and see if I needed anything. Not now, thanks! The RN came in at 6:50 and every hour from then until she left. She checked Dad and asked if I thought he needed more morphine. In hindsight, I wish I had given him some. I did not see evidence that he was in pain, but felt that he had no way of letting me know. He was comatose. He was still blinking; his forehead and hands were red. He was breathing five times every ten seconds. I don’t know why I measured it. It was good to have something to do, other than the mouth care.
            I rearranged the big easy chair twice, eventually pulling it out and putting the comforter and three pillows on top. It was comfortable. The oxygen tank pulsed all night, a form of white noise that cancelled out all the noises in the hall: people chatting, pages for various staff members, residents wandering the halls. I had brought my computer with family photos on it and was sorting the photos, travelling down memory lane and remembering all of the wonderful things Dad was and had been for me and for many others: father, husband, chorister, churchgoer, and volunteer. At eight p.m., he was breathing six breaths every ten seconds. By ten p.m. I had inhaled my food, had one of my juice boxes, and watched four CSI’s[1] in a row! It was bizarre and most surreal sitting there checking him every so often. It was comforting to watch TV and remove myself from the situation from time to time. It was a breather of sorts.
            I went closer to Dad for the umpteenth time, looking for signs. The RN had checked his feet for cyanosis, but I found it in his hands. I looked at one eye and a tear was starting to fall from it. For some peculiar reason I hesitated--do I ask for more meds? He was otherwise quiet and did not appear in pain. When Dad’s other eye began to tear I pushed the buzzer and asked for morphine. It was 10:45 p.m. I looked at Dad’s ribs sticking out; his organs were so small; there appeared to be nothing left of him.
            At 11:00 p.m. I did mouth care for him, just as Diana had done. I made a mess and got Vaseline on his beard, but did not worry about it. I knew he would forgive me. I held his hand and watched more TV.



[1] An American TV show about crime scene investigations--CSI’s.

Friday, January 15, 2010

What to expect?

        --February 7, 2007
            Dad was not putting sentences together very well--he could draw up many nonsensical words. He was napping every few minutes. He had some of his lunch still in his mouth. He was gesturing towards the bed and I knew he wanted to sleep. We pushed the call button and Cynthia came to our aid. She told us she would get Sharon to come and put Dad into bed. Sharon had a lovely sense of nonsense! Dad always smiled when he saw her. She is an attractive woman, perhaps in her thirties or forties, with dark hair and a winning smile. She always made a point of bending over, or kneeling down, and getting at his eye level. She told him she was going to get him into bed. I loved it when they treated him like a person and someone who might be sentient, even though all indicators pointed to the other end of the spectrum.
            They brought in the big mechanical lift. This was a piece of equipment about five feet high that was plugged in to charge its batteries when not being used. On wheels, it could be rolled and moved around the room easily. Sharon made Dad lean forward. They put the jacket around his shoulders and up under his legs. She told me that he really did not like it. She apologized to him, even though he couldn’t hear her, for having to use the lift. It was a touching gesture and I think it helped. It certainly helped me. I remember one time that he enjoyed it and was laughing and smiling at me as he was being lifted. Once he was in bed, he was asleep in thirty seconds. We tucked him in. I kissed him goodbye and left.
            I adored Sharon’s bedside manner. She was always respectful, kind, and caring at a level that went beyond her training. Her spirit embodied that of the PSW: she treated Dad with such dignity and respect at all times. Despite his inability to hear her, she always explained what she was doing. Jill Bolte Taylor, in her book My Stroke of Insight, demonstrated the respect, or lack thereof, that some staff members or visitors display to those who are perceived to be ill. Dr. Bolte Taylor suffered a life-threatening blood clot in her brain and wrote of her experiences. Since she had moments of clarity, with little brain function on the left side of her brain, she was able to understand emotions and feelings without having the language to articulate them at the time. She reminds caregivers and staff members that the best way to help those who are ill is to let them sleep. Beyond that, a caregiver’s respectful attitude is perceived on a deeper psychosocial level even by those with brain injuries and apparent dementia. She found that those who came in to visit her, if they possessed a positive attitude, and brought energy and a strong spirit into her room, gave her added energy. So many burned-out workers in LTC are hard-pressed to keep their energy up. So many of our RNs and RPNs are stressed-out beyond their abilities to cope. This has a profound effect on those in care. 


 
            This new level of Dad’s illness created in me a visceral reaction that still haunts me. I kept fighting the reaction. It affected my whole being: body, spirit, and soul. It was very upsetting, and I kept thinking that I would be getting better soon. I would learn to manage my grief for my late mother, as well as grieving the loss of my father as I knew him. Each stage had an effect upon me. Eventually, I would come to terms with all I had been through.
            I dreaded the next levels from here in Dad’s care. I could not find out any information on what to expect. From a Web site I found out what I could expect in the last forty-eight hours. Eventually, it said, cancer patients succumb to a brain hemorrhage as the cancer cells fight for oxygen and destroy the brain cells. I figured that there would be pain, as there was for my mother during the last years of her life. I remembered going in every morning and after school, checking to see if she was still breathing. When I went in to see Dad, he was very still.