Optimism is the faith that leads to achievement. Nothing can be done without
hope and confidence.
-- Helen Keller (1880-1968) American Writer
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My father was diagnosed with a brain tumour in 2003. He had a petite-mal seizure on a drive home from Toronto. It all began when my mother had some cancerous cells removed in September 2002, then a follow-up surgery in early 2003. She had to go back and have further cells removed from the site. Once mom and dad returned home from the second surgery for mom, dad had a grand mal seizure in the kitchen. My mother's comment, "I know that our lives will never be the same again.", was correct, if not intellectually embraced by my mother.
Caring for my mother at home, in palliative care, was a most difficult experience since she refused all help, denied to extended family that she was profoundly and, indeed, terminally ill. There is a difference between hope and recognition of a situation. Despite five surgeries, radiation and chemo, her life ended after a four-year battle. The battle included all of us to some extent. Neighbours managed to help my parents meet their daily needs, but it was time-consuming and difficult. Life at home was harder than it had ever been. I lived in the cottage, after looking twice before for a place to live near-by. It was cold, with only a baseboard heater, and nerve-wracking visiting mom in the morning, going off to work and coming home to the house.
Mom passed away on May 13th, 2006. It is very difficult watching yet another loved one get sicker and sicker. I have been trying to navigate my way through both a nursing home and the care of my father. He is rebellious and very angry with me. This is the research I have collected, as well as some of my ideas for caring for a person in palliative care, in a nursing home.
Dad's tumour began to grow back in February of 2006. An MRI confirmed this suspicion. He had radiation in April, which did not result in any improvement. In July another MRI confirmed that fact. We placed him in Gravenhurst Leisureworld, where he received terrific long-term care. Raymon succumbed to his brain tumour on February 16, 2007.
1-Denial 2-Anger 3-Bargaining 4-Depression 5-Acceptance.
Having recently lost his spouse, dad moved back and forth between these five tasks. I do not know if this is the tumour or the grieving process. I have seen my father pass through the five stages of grief in various ways. The are interconnected and one does not pass through them in any logical order. I know, going through the grieving process myself, that you make bit of progress and take a few steps forward, while taking a few backwards. He appeared to grieve more over the loss of his dog than my mother, but that may be the level of grief that he can deal with at this time. He is very angry that mom didn't tell him how sick she really was.
Counsellors who work with children give this kind of advice, adapted from my own files. Parent's reactions to death and dying vary with their cognitive abilitiy. My mother's reactions hovered around denial, while my father's reactions are not realistic, since he has had dementia and lost his hearing aids.
This kind of information has helped me to cope with my mother's death and help my father grieve.
The National Cancer Institute provides some information. They provide a series of questions the caregivers ask if keeping a patient at home. They give some suggestions for providing comfort:
Attitudes of Visitors
Let the patient do as much as s/he can. If s/he wants to feed him/herself independently then respect this wish while being vigilant. This takes a great deal of time, mind you and is pretty frustrating. It reminds me of my children, as toddlers, who wanted to "do it myself". Sometimes my father can do it himself, other times his hands shake so much he cannot speak a piece of meat. The tumour is affecting his eye/hand coordination, as well. he cannot manage to find the food for which he is aiming. It is hard on both of us. I spent a lot of time visiting dad at meals to help him eat. That gave us something to do together.
Dad is cold all of the time. I bought him a hot water bottle. It has, of course, disappeared. I never know where he is going to put things. It seemed to work at meal times, though.
Specifically, with brain tumours, I found that 80 % of people were dead after five years and that there is a 75% morbidity rate after after two years with people with brain cancer.
- while this is a user-created site, the information provided can be verified elsewhere. I tend to visit it to gather a bit of information to get me going. Most of the information can be helpful. This is a simple, straightforward information page. It sent me to some information regarding "after treatment", on the PLWC website. No one told us that it would likely grow back. Most of the literature talked of treatment and fund-raising efforts and 'living with cancer", not dying with cancer. I was looking for End of Life Care.
Dad is wheezing and his breathing is very difficult at times. Heo coughs a great deal.
Dad could not retrieve nouns as far back as spring, 2006 when his tumour began to grow back. He would be able to describe an animal i.e. dog, but couldn't name it. Now he makes little sense, except when he is making social conversation, i.e. "Hello. How are you?". It makes visiting him rather difficult.
Dad's feet began to swell in July, 2006. He could barely walk on them and he could not get his shoes on. His knees, afflicted with arthritis, are swollen and must be painful. THere is little we can do.
and Deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from an organic disease or a disorder of the brain. It is sometimes accompanied by emotional disturbance and personality changes.
Communication is very difficult. Dad is confused and doesn't always know where he is. He would wheel out of a room just before a meal or at the beginning of a visit. He pulled the fire alarm his first month in the long-term care home. His personality has changed profoundly.
• Progressive weakness and exhaustion
• Needing to sleep much of the time, often spending most of the day in bed or resting
• Weight loss and muscle wasting
• Loss of appetite and difficulty eating or swallowing fluids
• Decreased ability to talk and to concentrate
• Loss of interest in things that were previously important
• Loss of interest in the outside world and wanting only a few people nearby—the person with cancer may want only a few special people to visit, or may need visiting time to be limited
The following characteristics are common during the final days of life:
• Breathing becomes slower, sometimes with very long pauses between breaths
• Congestion with gurgling or rattling sounds when breathing as the patient becomes unable to clear thick secretions from the chest
• Skin becomes cool, especially the hands and feet, and may turn a bluish colour
• Dry mouth and dry or cracked lips
• Decreased amount of urine and incontinence (loss of bladder and bowel control)
• Physical restlessness or repetitive, involuntary movements
• Disorientation and confusion about time, place, and identity of people, including family and close friends
• Hallucinations (seeing or hearing things that are not there)—these are normal and are not a cause for concern unless they scare or upset the person with cancer
• Drifting in and out of consciousness, possibly entering a coma
Care for Caregivers
Jennifer A. Jilks [ Articles | e-Portfolio ] Last update: Feb. 10/2007