How to Cope with Stress As a Cystic Fibrosis Caregiver
Get to know your loved one’s CF care team., Ask for help from family and friends., Keep an instructions list handy for sitters or helpers., Get financial support., Find a support group., Look for online forums and groups., Talk with a therapist.
Step-by-Step Guide
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Step 1: Get to know your loved one’s CF care team.
The treatment of CF involves a host of medical professionals, from the primary care doctor to the dietician.
Each of these professionals can provide you with a range of support options:
They can help you become the best caregiver possible.
Self-doubt and lack of information are leading causes of caregiver stress.
Developing confidence and efficient means of offering care will help keep both you and your loved one in the best frame of mind.
See if your loved one can sign a release of information document so that their medical team can communicate with you freely as needed.
Ask the primary doctor or assisting technician to show you how to administer treatments, like nebulizers and air clearance.
Ask the CF dietitian about which medications need to be taken with a meal or snack.
Ask them for tips about how to best manage your loved one's nutritional and caloric needs, especially if your loved one is a picky child.
CF specialists can also refer you to mental health professionals and local CF support groups.
Ask the primary doctor if they can recommend a CF-specific psychologist who takes your loved one's insurance. -
Step 2: Ask for help from family and friends.
Feeling stressed or overwhelmed can indicate that some caregiving assistance might be the best option.
Asking help from family and friends will help you balance your busy schedule and set aside a little time for yourself.Compile a list of family and friends who you can ask for help so that all of the responsibility does not fall to just one person.
Ask them if they can perform tasks like picking up prescriptions or taking your loved one to a care center visit, especially if you have a schedule conflict due to work or another responsibility.
For example, ask them, "Is there any chance you're willing to pick up Joe from soccer practice, then watch him for an hour or so? The field is five minutes from your house, and I have a work meeting that I can't miss.
It'd be an enormous help, and I'd hate for him to miss his practice!"
A clear set of instructions will make it easier for people to assist you with caregiving.
Knowing your sitters or helpers are empowered to offer the best care will also give you peace of mind, further decreasing stress.
Make a list and posit it somewhere they can easily find it, such as on the refrigerator.
Make sure the list includes:
Appropriate dosages and directions for all medications If applicable, snacks and meals to offer with medications.
Times of day to administer nebulizers and airway clearance.
Be sure to instruct your sitter or helper how to offer specific treatments. , Medical bills and confusing financial jargon are among the most overwhelming aspects of any medical condition.
If you’re responsible for paying for healthcare or overseeing your loved one’s finances, there are plenty of ways to find information and assistance.
Consult with your loved one’s doctors and ask for help understanding coverage or charges.
If you don't think a charge should be present, call the office to rule out a simple coding mistake.
Ask the doctor's office, "I see a charge on this statement that I don't understand it.
Can you explain this procedure to me, and tell me why it's on the statement?" Before your loved one undergoes a non-routine procedure, call their insurer and make sure it's covered.
Always verify with the insurer, rather than just the healthcare provider, that all new medical professionals they see are in-network providers.
Ask the insurer, "My child is going to see a new technician for their CF care.
I wanted to call and make sure the new provider is in our insurance network." Write down the name of the person who verifies your coverage, along with the details of your conversation, and keep your notes in your records.
Look for organizations that offer financial aid, such as co-pay card programs that help with paying for prescriptions out-of-pocket.
Search CF Living’s financial resources section for help paying for medical care: http://www.cfliving.com/resources/financial-support.jsp.
You can check your eligibility for a co-pay card program here: https://www.genentech-access.com/. , When coping with stress due to caregiving, always remember you are not alone.
Ask your loved one’s CF care team if they can recommend a local support group for fellow caregivers.
These offer opportunities to share your stories, vent frustrations, and listen to others in situations similar to your own.Check out the community resources compiled by Cystic Fibrosis Research, Inc.: http://www.cfri.org/cfsupport.shtml You can also search online for “Cystic Fibrosis caregiver support groups” near your location. , If you don’t have the time or are hesitant to go to a support group in person, you can turn to an online community.
Web-based help has been shown to be an effective means of coping with stress for those caring for loved ones with CF.For example, try looking for resources at CF Living’s website: http://www.cfliving.com/resources/resources-links.jsp.
You can also check out the CysticLife online community: https://cysticlife.org/. , If support groups are not an option for you, then you can also meet with a therapist to get help.
They can help you to develop coping skills to manage your day to day life.
You can meet with a therapist weekly, monthly, or more often as needed. -
Step 3: Keep an instructions list handy for sitters or helpers.
-
Step 4: Get financial support.
-
Step 5: Find a support group.
-
Step 6: Look for online forums and groups.
-
Step 7: Talk with a therapist.
Detailed Guide
The treatment of CF involves a host of medical professionals, from the primary care doctor to the dietician.
Each of these professionals can provide you with a range of support options:
They can help you become the best caregiver possible.
Self-doubt and lack of information are leading causes of caregiver stress.
Developing confidence and efficient means of offering care will help keep both you and your loved one in the best frame of mind.
See if your loved one can sign a release of information document so that their medical team can communicate with you freely as needed.
Ask the primary doctor or assisting technician to show you how to administer treatments, like nebulizers and air clearance.
Ask the CF dietitian about which medications need to be taken with a meal or snack.
Ask them for tips about how to best manage your loved one's nutritional and caloric needs, especially if your loved one is a picky child.
CF specialists can also refer you to mental health professionals and local CF support groups.
Ask the primary doctor if they can recommend a CF-specific psychologist who takes your loved one's insurance.
Feeling stressed or overwhelmed can indicate that some caregiving assistance might be the best option.
Asking help from family and friends will help you balance your busy schedule and set aside a little time for yourself.Compile a list of family and friends who you can ask for help so that all of the responsibility does not fall to just one person.
Ask them if they can perform tasks like picking up prescriptions or taking your loved one to a care center visit, especially if you have a schedule conflict due to work or another responsibility.
For example, ask them, "Is there any chance you're willing to pick up Joe from soccer practice, then watch him for an hour or so? The field is five minutes from your house, and I have a work meeting that I can't miss.
It'd be an enormous help, and I'd hate for him to miss his practice!"
A clear set of instructions will make it easier for people to assist you with caregiving.
Knowing your sitters or helpers are empowered to offer the best care will also give you peace of mind, further decreasing stress.
Make a list and posit it somewhere they can easily find it, such as on the refrigerator.
Make sure the list includes:
Appropriate dosages and directions for all medications If applicable, snacks and meals to offer with medications.
Times of day to administer nebulizers and airway clearance.
Be sure to instruct your sitter or helper how to offer specific treatments. , Medical bills and confusing financial jargon are among the most overwhelming aspects of any medical condition.
If you’re responsible for paying for healthcare or overseeing your loved one’s finances, there are plenty of ways to find information and assistance.
Consult with your loved one’s doctors and ask for help understanding coverage or charges.
If you don't think a charge should be present, call the office to rule out a simple coding mistake.
Ask the doctor's office, "I see a charge on this statement that I don't understand it.
Can you explain this procedure to me, and tell me why it's on the statement?" Before your loved one undergoes a non-routine procedure, call their insurer and make sure it's covered.
Always verify with the insurer, rather than just the healthcare provider, that all new medical professionals they see are in-network providers.
Ask the insurer, "My child is going to see a new technician for their CF care.
I wanted to call and make sure the new provider is in our insurance network." Write down the name of the person who verifies your coverage, along with the details of your conversation, and keep your notes in your records.
Look for organizations that offer financial aid, such as co-pay card programs that help with paying for prescriptions out-of-pocket.
Search CF Living’s financial resources section for help paying for medical care: http://www.cfliving.com/resources/financial-support.jsp.
You can check your eligibility for a co-pay card program here: https://www.genentech-access.com/. , When coping with stress due to caregiving, always remember you are not alone.
Ask your loved one’s CF care team if they can recommend a local support group for fellow caregivers.
These offer opportunities to share your stories, vent frustrations, and listen to others in situations similar to your own.Check out the community resources compiled by Cystic Fibrosis Research, Inc.: http://www.cfri.org/cfsupport.shtml You can also search online for “Cystic Fibrosis caregiver support groups” near your location. , If you don’t have the time or are hesitant to go to a support group in person, you can turn to an online community.
Web-based help has been shown to be an effective means of coping with stress for those caring for loved ones with CF.For example, try looking for resources at CF Living’s website: http://www.cfliving.com/resources/resources-links.jsp.
You can also check out the CysticLife online community: https://cysticlife.org/. , If support groups are not an option for you, then you can also meet with a therapist to get help.
They can help you to develop coping skills to manage your day to day life.
You can meet with a therapist weekly, monthly, or more often as needed.
About the Author
Laura Lopez
With a background in lifestyle and practical guides, Laura Lopez brings 4 years of hands-on experience to every article. Laura believes in making complex topics accessible to everyone.
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