Monday, December 8, 2008

The Book is out!



It is with great excitement that I drove to Ottawa (from Muskoka, where I live). It was a two-fold purposeful trip.

Firstly, it was my granddaughter's first birthday and we had a party.

Secondly, to pick up 200 copies of my book!

Both of us are happy girls!

It was fun seeing the generations together. I often feel the presence of my mother and know that she looks down on us with love. She was so proud of her granddaughter, Caitlin, and would have loved Josephine so much.

They say that one should deal with strong emotional events by writing it down. I found it helps so much. I can look back on my story of caring for ailing parents with much more clarity.

The big book launch will be in February, but for now I am selling them from my car!

There are some new studies that have found 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 work on spirituality and autobiography interests me, as well as the work done by Pennebaker, convince me that the writing process is a healing one.

"We are healed of a suffering only by expressing it to the full." -Marcel Proust, novelist (1871-1922)

Wednesday, September 17, 2008

Cover Page possibilities

I am trying to make a final decision on the cover of my book. Any thoughts? It is a diary and then provides research-based information on health care (and death & dying) in Ontario, specifically resources for family members who become Alternate Decision-makers.



From my strong, tall father, who could repair, fix or build anything, he lost the ability to figure out the function of things. He bitterly fought using a walker, eventually was in a wheel chair. He tried to get out of it all the time. We had to restrain him as he would be a danger to himself.

The tumour affected his balance.


He was unable to drink easily at the end. I would have to hold the cup for him, if he could not manage two-handed.


I loved dad's hands. They reflected his age and experiences, which make us all more beautiful human beings.

Friday, August 22, 2008

Glossary of terms

This list is found in the back of my book.

Activities of Daily Living (ADL)--bathing, grooming, toileting, dressing, eating, and other activities necessary for daily living and survival

Agnosia--failure to recognize objects

Aphasia--a disturbance in receptive or expressive language

Apnea--temporary cessations in breathing; this is a sign of approaching death in palliative care patients

Apraxia--loss of understanding of the uses of things

Assistive device--a mechanical aid to make ADL easier

Benign brain tumour--a slow-growing tumour that does not tend to invade nearby cells

Biopsychosocial issues--interrelated biological, psychological, and sociological issues

Carcinogen--a substance that has been proven to cause cancer in living cells

Caregiver--one who provides care

Care recipient--one who receives care

Comorbidities--the effect of all disorders or diseases on an individual in addition to the primary health issue

Dementia--an acquired, persistent impairment in two or more cognitive areas of executive functions; profound mental incapacity

Delirium--• Disturbance of consciousness

• Disorientation, wandering attention, confusion, hallucinations

Dysphagia--choking and swallowing issues

Executive functions--planning, organizing, sequencing, and abstract thought

Frail--premorbid: at risk for biopsychosocial issues; inability to manage physical, social, and emotional needs (ADL)

Geriatric--of or relating to old age or old people

Independent Activities of Daily Living (IADL)--caring for pets and dependents; communicating with others effectively; managing finances and health; doing housework, meal preparation, and cleanup; looking after transportation and safety procedures

Infarct--a small, localized area of dead tissue caused by an inadequate blood supply; can result from blood clots or diabetes

Incontinence--inability to control evacuation of urine or feces

Long-term care (LTC) facility/home--a health care facility for those with physical disabilities that offers 24/7 nursing staff; formerly called a nursing home

Malignant brain tumour--a tumour that grows quickly and invades surrounding cells; these kinds of tumours are the least likely to be totally removed surgically, since they invade and damage important structures

Metastasize--when cancer cells break off from the original site and spread to other parts of the body to cause malignancy there

Morbidity--the quality of disease; the extent of illness, injury, or disability in a defined population

Nurse practitioner--a nurse who meets primary health care needs, conducts physical examinations, selects treatment plans, and identifies medication requirements

Nursing home--now called a long-term care home; differs from a retirement home

Orphan patient--a person without a family physician

Palliative care--giving care at the last stages of life

Polypharmacy--taking too many pharmaceuticals/prescription drugs

Premorbidities--factors that may lead to death

Primary care--basic or general health care from the medical system

Registered nurse (RN)--a nurse who is licensed to practise and is a registered member of a nurses’ association

Registered practical nurse (RPN)--a person who is registered by a professional association of nurses as having been trained to perform basic nursing tasks under the direction of a physician or an RN.

Respite care--temporary institutional or home care of a dependent ill or handicapped person to give respite to the usual caregiver

Retirement home--a private residence for seniors (profit or non-profit); governed by the Landlord Tenant Act

Sleep apnea--intermittent failure to breathe during sleep

Subcortical issues--issues such as plaque and damaged brain cells; physical evidence manifests as dementia

Supportive living--also called assisted living, in which supports are on call 24/7

Acronyms related to aging

Acronyms--Senior Care

ADL Activities of Daily Living

ADP Assistive Devices Program

ALC Alternate Level of Care (hospital designation)

CAT Scan
CT Scan Computerized Axial Tomography (takes x-rays of the brain)

CCAC Community Care Access Center

CCC Complex Continuing Care

CHC Community Health Centres

ED Emergency Department

ER Emergency Room

FHT Family Health Team (now mandated across the province in Ontario)

FIPPA Freedom of Information and Protection of Privacy Act

HHR Human Health Resources

HSP Health Service Plan

IHSP Integrated Health Service Plan

IADL Instrumental Activities of Daily Living

ICE Isolated Community Experience (to serve seniors in rural areas)

IGS Integrated Geriatric Systems

LHIN Local Health Integration Network

LTC Long-Term Care

MIS Management Information System

MLAA Ministry LHIN Articulation Agreement (data collection)

MOHLTC Ministry of Health & Long-Term Care (Ontario)

MRI Magnetic Resonance Imaging (MRI Scan uses a magnet and radio waves to take pictures of the brain. It provides more detail than a CAT scan.)

NSM North Simcoe Muskoka

OCSA Ontario Community Support Association

PACE Program of All-inclusive Care for the Elderly

PASD Personal Services Assistance Device

PEC Public Education Coordinator

PHIPA Personal Health Information Protection Act

PRC Psychogeriatric Resource Consultant

PSW Personal Support Worker

RAI Resident Assessment Instrument (used in home care and palliative care)

RGP Regional Geriatric Program

RISC Regional Integrated Senior Centre

SGS Specialized Geriatric Services

TPO Transfer Payment Organization (governments have been outsourcing health care to various agencies, transferring money to them. They are governed by boards of directors.)

Monday, January 28, 2008

Recovery from Depression and Stress

As I recover from depression and grief, I continue to seek solace in nature. After giving up my career, my Ottawa home and garden, familiar colleagues, my old city life, and my parents, I take it slowly. Walking heals me. Today it was glorious out walking in the dusk. I kept an eye out for the wolf that appeared last week when Brian was speaking on the phone to Caitlin, my daughter, while I was out at work. He was gazing out the window while he talked and stopped mid-sentence, awed by the sight as it hustled by. I think it was looking for our turkey vultures that visit our feeders--it was the cycle of life. You could see its footprint in the snow as it trekked across the lake. The colours, the shades and shadows, as well as the creatures that continue to survive in the minus double-digit temperatures always stirred me.
This morning, the blue jays were puffed up for warmth. I had filled the feeders last night--I knew it would be a cold night, ten degrees below zero or even less, and they would be hungry. I counted five jays negotiating for a spot at the feeder. The squirrels, in that endless hide-and-seek game, had wee faces covered in snow as they doggy-dug trying to first bury and then find sunflower seeds or peanuts. They were a hungry lot today, and I may give them all a second sympathy feed. The rest of us were on diets, but we don’t have to live outdoors. I was glad for no yard duty anymore. Supervising inadequately dressed teens, hell-bent on jockeying for yard position, was no fun. I spend longer outdoors now, but it is my choice and I can move around, take photos, and explore nature.
I am so glad to be on the upturn emotionally. I still find it hard being in large groups. The winter was passing, and spring would come, just as it had for the previous fifty years of my life! I endeavour to get out every day to walk or do other outdoor activities. The Vitamin D is necessary for us old folks. I have been off meds for long enough to know that I don’t need them right now, but I know that my doctor is there if I need him, and he is happy with my progress. Quitting antidepressants too quickly or suddenly can result in setbacks.
I had worked hard at doing my M.A. coursework: research to help me navigate through the past few years of depression and stress. I feel that I have made many gains. There have been days when I felt sad and tired, and re-experienced some of the warning signs of depression (sadness, anger, fatigue, inability to make a decision, and insomnia), but they are less frequent. When I recognize the warning signs, I make sure I work out more, get outside in the sun, take time for me, do something for myself, and it passes. What a relief.

In the spring, Caitlin and Jean-Luc brought our granddaughter for a visit. She was thriving in the joy and love of a wonderful home. We visit lots with Jesse, who lives the closest, in Toronto. I regularly communicate with Terry, too, and he visits from time to time. All have been grieving the loss of their grandparents. We often speak of the fond memories that we hold dear: trips to the cottage and trips to town; tons of photos and slides are on hand.

Thursday, January 10, 2008

Conclusions

Whether our seniors require eldercare in the home or in long-term care, there are many issues that create barriers to success. If we keep our seniors at home, they are happier, and often healthier, but more at risk psychologically, socially, physically, and emotionally. Caregivers themselves run the risk of burnout, with its attendant physical and psychological effects. Some profit and non-profit agencies provide respite or day-away programs for senior care. This alleviates the burden of providing the quality of care that our seniors deserve. In many cases, however, if outside agencies are accessed to recruit home care, we run the risk of hiring people who are untrained and unlicensed in caring for those with complex morbidities, exacerbated by complications of complex prescriptions, physiotherapies, emotional complications of dementia, or other biopsychosocial issues.

The difficulty with parenting has been that many parents have passed through a laissez-faire phase in which the child was allowed to flourish and thrive. I remember in Grade 7 we were to self-select learning activities, with little direct guidance from the classroom teacher. I learned very little in that class and became frustrated. This philosophy of parenting had to be changed; many books were published to teach us how to say no to our children. Rabbi Shmuley Boteach offers a show called Shalom in the Home. He is re-educating parents in how to be fair and firm. He is teaching parents to give unconditional love with the right hand and discipline with the left. Both are necessary.

In my experiences with family and friends, I have heard endless stories of adult children who are unable to say no to frail and ailing parents. It is a reversal. Adult children have to lie and deny in an attempt to protect themselves from their parents’ wrath.

Frail adults refuse the help of outside agencies, whether or not money is an issue. It is the less frail spouse who suffers. One fifty-year-old daughter, whose mother had survived breast cancer in her seventies, is trying to persuade her father to allow people to come in to help them. When he falls, the mother cannot pick him up. The mother is now fighting high blood pressure with the stress of caring for this ill man. Tough love is a concept that must be applied to adults as well as children. In this situation, it should not be up to one spouse to refuse care if family members determine that there is a need.

One family, whose father lived in the family farmhouse as he had as a boy, promised their father that his stay in the long-term care home would only last a month. They are now using more excuses to keep him in. He doesn’t like his roommate, who turns up the TV too loud, and is fighting to keep his old life. Frail and ailing adults deny that they are unable to stay in their homes; they experience falls and break limbs, which land them in an LTC home. As seniors, we must make adult choices or we will not be treated as adults.

Our favourite librarian, Mari, who kindly delivered books to my mother, told me that she tried to persuade my mother to get some help with ADL. She offered to put my parents on the Meals on Wheels program, which my father and my husband delivered. Mom would not buy into any of this. Only old, sick people needed home support!