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If you are reading this material, chances are you or a loved one have been diagnosed with a life threatening or long term illness. If you are feeling different emotions from sadness to anger, we want you to know that those feelings are normal. It is our wish that the information in this book will be useful to you in maintaining some sense of normalcy in an ever-changing environment.
The world as you know it has changed. You may feel like you are on an emotional roller coaster with increased visits to doctors, loss of work, fear of medical costs, loss of control of your daily routine and numerous other factors.
You and your loved ones may at one time or another experience chronic sorrow - a grief reaction that occurs when loss (health) continues to be present in the life of a family. Chronic sorrow is not a loss that lessens with time. With each new challenge in the condition of the ill family member, there is a new imprint of loss that requires adjustment to change and can lead to depression and anxiety for everyone.
Possible Responses to Long-Term or Life-Threatening Illnesses All of these responses are normal, appropriate, and valid. There is no “correct” way to react to the diagnosis of or living through a long-term or life-threatening illness.
SADDNESS, DESPAIR IRRITATION, RAGE APATHY, GUILT SHAME, GIDDINESS MOOD SWINGS WITHDRAWAL
EMOTIONAL
RESPONSES
COGNITIVE RESPONSES
CONGUSION, FORGETFULNESS DIFFICULTY IN CONCENTRATION
AGITATION INTRUSIVE, REPETITIVE THOUGHTS
RIGID THINKING/ DIFFICULTY TAKING IN NEW KNOWLEDGE
CRYING, APPETITE CHANGES PAIN, HEADACHES, STOMACH ACHES, SENSITIVITY TO NORMAL PHYSICAL COMPLAINTS, LETHARGY AGITATION HYPERACTIVITY SLEEP DISORDERS
PHYSICAL RESPONSES
After the Diagnosis: Two Phases of Living with a Long-Term Illness Addressing the issues before or as they come will reduce stress, give stability, and allow for more time with loved ones when it is most precious. During this period of long-term or terminal illness, these are some of the issues that you may face:
Phase 1 ● “Normal” life is put on hold ● Decisions about treatment,
work, and scheduling for the short-term
● Who will help? ● Financial concerns ● Uncertainty, perceived lack of
control ● Waiting for test results and a
plan ● Gathering of information
about the disease or condition
● Questions about who should be told and how much to tell
Phase 2 ● Finding the temporary “new
normal” ● Continuing financial
concerns and stresses ● Life is no longer on “hold” but
it is still in continuing crisis ● The emotional
rollercoaster of optimism and pessimism
● Changes of the role for the ill person and for the caregiving adults
● Parenting and involving the Children in the process
● Designating a Family Communicator
How to Tell the Children Children need to be included in the honest conversation about illness and death so they can be best prepared for what is to come, including the change of routine, changes in their loved one, or perhaps even the prospect of death. You should always be honest and developmentally appropriate when talking with your children. Below are some examples of what you may encounter when having these conversations. Young children (ages 2-6): Use simple, truthful words (cancer, chemo, death, died) about the situation. Allow the child to ask the same questions over and over. School-aged children (ages 6-10): Tell the child as much detail as you can about the diagnosis and what to expect and what the parent may be feeling (“he/she is feeling weaker, having trouble eating, or sleeping a lot.”)
Pre-adolescents (ages 10-13): Children in this age will start to make the connection that they too will die someday. They may ask questions about relationship changes that may occur in this time of great change.
Teens: Teens will typically understand more about the medical aspects of the diagnosis. They are old enough to recognize how greatly their lives will change if their loved one dies and they struggle with this. If they are interested, you can give teens details about the parent’s condition, symptoms, possible side effects of medicines, what they might expect in the next few days or weeks, and other information.
Other things you can do:
● Demystify the experience. This does not have to be a taboo subject.
● Incorporate religion if your family has religious beliefs (prayers, readings, family rituals).
● Remember you won’t always have all the answers.
Stressed Out?
Easily Angered?
Overwhelmed?
Feeling Hopeless? Sleeping more or
less than usual?
Lost interest in Activities?
Relying on drugs/alcohol?
Abusing prescriptions?
If you are experiencing any or all of these, you may be suffering from Caregiver Stress. We want to help.
You are not alone. Taking care of a loved one is a noble, yet
difficult path. Self-care is important so you can not only care for others, but keep yourself healthy. Caregiver Stress is very common. As a caregiver, it is important for you to practice these things:
Focus on what you can realistically give and do Help your loved one get their medical and legal affairs in order
Find a support group Ask care team about local resources Maintain positive friendships Keep yourself healthy
Activities to Help Preserve Memories for Children
Cards: Prepare cards for your child’s future milestone achievements, such as
graduation, going to college, marriage, and birth of a child. Impart your wisdom at these
milestones so you can let them feel you are a part of the
celebration.
Memory Book: Create an individualized book with photos
(of you and your child) and comments about those life
events.
Memory Box: Compile a memory box (size does not
matter) of items you wish for your child to have that is
yours. With each item, you can write why you are giving this
to your child, why this memento is special or reminds
you of them.
Record yourself reading your children’s favorite books or
other stories. You can also tell stories from your childhood, recount how you and their
mother or father met, or any other stories you think your
child may enjoy.
Cast of your hand: This can also be done with you holding your
child’s hand. See Martha Stewart plaster hands project at:
http://www.marthastewart.com/858107/plaster-hands
Additional Resources
WV Caring (Advanced Illness Care) www.wvcaring.com
American Cancer Society www.cancer.org
American Parkinson Disease Association www.apdaparkinson.org ALS Association www.alsa.org Alzheimer’s Association www.alz.org Family Caregiver Alliance www.caregiver.org Visiting Nurses Association of America www.vnaa.org
Important Dates _______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ ______________________________________________________________________________________________________________________
Phone Numbers _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Notes _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
West Virginia Family Grief Center www.wvfgc.org 304-282-4935
