Dying With Cancer
Optimism is the faith that leads to achievement. Nothing can be done without
hope and confidence.
-- Helen Keller (1880-1968) American Writer
Information on this page:
[ 5 Stages of Grief | Counsellors
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Facts | Caregiving Tips | Palliative
Care | Wikipedia help | Symptoms|
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Guide
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.
The five stages of grief are:
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.
- Respect their needs to talk or to be silent.
- Deal with the issues as they arise. Talk to the Trauma Response team if
you have students who are directly affected.
- Listen to their concerns.
- Let them you know you are upset, too.
- Model the means by which you deal with your grief.
- Do not tell them the answers if you do not know the answers.
- Clear up faulty misperceptions, if they arise. (During 9/11 kids were afraid
to walk home. Kids were afraid for their pets, relatives, etc.)
- Have them talk to their parents about their feelings. Parents need to know.
- Let them tell their stories. Draw pictures, create poems, write letters.
- Make a fear box. Cut out pictures from newspapers & magazines that
represent their fears.
- Write down your fears. Assign them a number from 1 - 5. have them talk
about these fears with their families.
- Help others. Give a donation to one of the relief agencies.
This kind of information has helped me to cope with my mother's death and help
my father grieve.
What can you caregivers do?
- Talk about yours and their feelings. Tell your story about as much as you
want. Draw pictures, create poems, write letters.
- Make a fear box. Cut out pictures from newspapers and magazines about what
you are afraid of and paste around the box. Write down your fear and put it
inside.
- Create a worry list. Make a list of your worries from 1 to 5. Number 1 is
the biggest. Talk about this list with someone you trust. Your family, counsellors,
or your friend.
- Help others. Give food, clothing, or toys to people that need it. Suggest
that your family donate money to a good cause.
- Reach out to groups than provide support. The Canadian Cancer Society,
It helps remind us we are all working together.
- Remember that we have all survived a traumatic experience.
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
- Bring them treats.
- Dress up. Look good.
- Be positive.
- Be supportive.
- Be honest.
- Ask if there is anything you can do.
- Respect the person's need for privacy.
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- Respect the patient's needs and wants, if possible.
- Try to make his/her space as homey as possible.
- Allow the person to express fears and concerns about dying, such
as leaving family and friends behind. Be prepared to listen.
- Be willing to reminisce about the person's life.
- Avoid withholding difficult information. Most patients prefer to
be included in discussions about issues that concern them.
- Reassure the patient that you will honour advance directives, such
as living wills.
- Keep the person company—talk, watch movies, read, or just
be with the person.
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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.
Comfort
- Use pillows and cushions to make beds and wheel chairs more comfortable.
Have the patient change positions frequently and change bed sheets at least
twice a week or more frequently, as necessary.
- As much as possible, elevate the patient's head, or turn the patient on
to his or her side, to help make breathing easier.
- Use blankets to help keep the patient warm. Use a hot water bottle. Do
not use electric blankets as they can cause burns. Gently rub the patient's
hands and feet, or soak the hands and feet in warm water. Give them a hot
cup of coffee or tea.
- To ease confusion and disorientation, speak in a clear, calm voice and
remind the patient of time, place, and who is there with him or her. i.e.
Hi Dad, it's me, Jenn. When sigingin into dad's nursing home I must wear a
visitor's badge. I created on of my own with my name on it. Somedays he is
very confused.
- Keep a calendar handy to help patients understand what day it is. Using
concrete tools such as this really help.
- If the patient can swallow, offer sips of liquid through a straw or from
a spoon to help keep the mouth moist. Glycerine swabs and lip balm also help
with dry mouth and lips.
- A hand massage with lotion can help with blood circulation and dry skin.
- Just sitting with your relative can be awkward, but sometimes it is all
you can do. I you touch them and talk to them, you can give them reassurance.
- Over 220,000 Canadians die each year.
- 75% of all deaths occur in people over 65 years of age.
- 75% of the deaths take place in hospitals and long-term care facilities.
- Each death potentially affects the well being of an average of five other
people.
- An estimated 5% of dying Canadians receive integrated and interdisciplinary
palliative care.
- About one quarter of the total deaths in Canada are related to cancer,
but cancer patients account for more than 90% of those receiving palliative
care.
- The number of institutional palliative care beds has been cut as result
of health care restructuring.
- Few provinces have designated palliative care as a core service with a
specific budget.
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.
Palliative Care
- People are receiving significantly different treatment in various institutions
across the country.
- People over 65 years of age are less likely than younger people to want
to die at home. This is not my experience.
- Rural residents have considerably less access to palliative care than
the residents of large urban areas.
- Most of the costs and other burdens of homecare are assumed by the family.
It appears that daughters tend to be the caregivers, rather than sons.
- Palliative care relies disproportionately on charitable donations for
survival.
- In my father's nursing home 90% of residents are unable to make decisions
for themselves. They have family members with Power of Attorney.
- Many of the people I talk to tell me that the most difficult decision they
have made is to put a family member into a nursing home. It is a decision
at which the elderly most often rebel.
- 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.
SYMPTOMS
- dyspnoea - difficult or laboured respiration
Dad is wheezing and his breathing is very difficult at times. Heo coughs
a great deal.
- dysphasia - inability to communicate due to brain damage
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.
- oedema - An excessive accumulation of serous fluid in tissue spaces or
a body cavity
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.
- shortness of breath
- dementia - severe impairment or loss of intellectual capacity and personality
integration, due to the loss of or damage to neurons in the brain
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.
- delirium - a more or less temporary disorder of the mental faculties,
as in fevers, disturbances of consciousness, or intoxication, characterized
by restlessness, excitement, delusions, hallucinations, etc.
Goals
- to die quickly and painlessly and with as much dignity as possible
Signs of impending death include:
- drowsiness
- confusion
- decreased socialization and withdrawal
- decreased appetite and thirst
- loss of bladder or bowel control
- darkened urine
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- coolness of the skin
- rattling or gurgling sounds
- turning the head towards a light source
- increased pain
- involuntary movements
- changes in heart rate
- loss of reflexes
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The Final Weeks
• 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
External links
Caregiver Information
Care for Caregivers
Jennifer
A. Jilks [ Articles
| e-Portfolio ] Last update:
Feb. 10/2007
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. 