February 5, 2021 at 11:41 am #27169Charlene MarshallKeymaster
Idiopathic pulmonary fibrosis (IPF) is a challenging disease to navigate, both for the patient and their caregiver(s). To help provide support for IPF caregivers, Pulmonary Fibrosis MD has some useful resources.
1. National Caregivers Library
This site provides information on how to be a good caregiver, while caring for yourself in the process. The site is easy to navigate and provides quick links to checklists, tools and popular articles for additional information.
2. Lotsa Helping Hands
The main focus of this site is for caregivers to create communities for their loved ones with IPF. These communities are established to support the caregiver in practical ways, such as running errands, or helping out with anything the patient needs. There is also a mobile version available, enabling caregivers to get in touch with their communities 24 hours a day. It’s a great organizational tool.
3. Caring Bridge
A closed social network that enables you to keep family and friends updated on the patients condition through blogs. This is an easy way to keep people informed without having to make individual phone calls regarding medical updates or appointment summaries.
Were you aware of these resources?
Have you ever used any of these? If so, which one and how has it helped you?
February 14, 2021 at 6:38 pm #27286Eleanor HepplestonParticipant
Thanks for posting these resources. I will be taking a look at them. I am currently the caregiver for my husband with IPF. I have been using the private Messenger off Facebook to send 1 message to all family about his condition. It works well as everyone gets the same info and answer to questions. There is no way I’d have time to talk or send info to each one. There is enough extra we are picking up that we don’t need to make more work.
February 15, 2021 at 11:58 am #27294Charlene MarshallKeymaster
No problem, I’m glad to hear they might be helpful to you in keeping others up to date on everything going on. CaringBridge is particularly helpful with that! Sounds like your husband is very lucky to have you, and I certainly agree: no additional work is needed for caregivers, you all do so much for us patients already. Thank you!
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