We know that a Fanconi anemia (FA) diagnosis is earthshaking, and not just for those diagnosed, but also for caregivers. If you are a caregiver to someone with FA, we want you to know that you are not alone. We are here to help you navigate the FA journey by providing education and support that we hope will make this diagnosis more manageable.
“We realize that so many of the services, support, and appointments you spend your days on are aimed at the needs of your loved one. But we also see that you, dear caregiver, are living through and with the effects of this disease as well. We want you to have a space that’s dedicated to you and to the reality that is being a caregiver for a person with Fanconi anemia. This space is for you.”Allison Breininger, wife and caregiver to husband Sean, who lives with FA
You probably never expected to take on the role of caregiver now or in this way, so it is with much love and gratitude for your integral role along this journey that we welcome you to the FAmily. We see you, we honor you, and we are here to support you.
FARF provides education and support to caregivers through a variety of programs and services.
We’ve teamed up with The Negative Space to celebrate and recognize your integral role along the FA journey. You are part of the FA story, but you also have your own story. We hope that the items in this box remind you that YOUR story matters! These boxes are ordered by FARF and shipped by The Negative Space to support newly diagnosed families or those going through major medical events. To notify FARF that a primary caregiver is currently supporting a loved one through a major medical event and could benefit from receiving a caregiver gift box, please contact Family Services Program Manager, Rosie Holcomb. Caregiver gift boxes are currently only available for shipping within the United States and are limited to one box per household. Thank you to Allison Breininger at The Negative Space, an FA caregiver herself, for designing these gifts and working alongside us in efforts to better support caregivers!
We often think of grief as something that only happens after a death, but it can also be felt in anticipation of a death or other kind of loss. In this community, grief begins at the time of diagnosis (or as soon as the possibility of death occurs in one’s mind), and it does not have a destination. It’s natural to grieve the future you thought you’d have with your loved one, the inevitable medical crises on the horizon, the physical and emotional pain that your loved one will endure, future financial strains, relationships that may suffer, as well as all future secondary losses that accompany a diagnosis like Fanconi anemia. This feeling of grief before impending loss is called anticipatory grief. Anticipatory grief includes a wide range of emotions, with grief responses that fall on a very broad spectrum; there really is no right or wrong way to grieve.
Have you experienced anticipatory grief? You’re not alone. Many, if not all, in the FA community share this experience. That’s why two members of our caregiving community, Allison Breininger and Rachel Altmann, have put together a list of resources for those experiencing anticipatory grief or grief from the loss of a loved one. No one should have to face grief alone. Click to view the resources.
If you are experiencing grief and would like help navigating resources, or to be connected to others in our community who have walked in your shoes, feel free to reach out to our family services team at 541-687-4658 x 301. We are here for you.
Do you ever wish for an easy way to keep people updated or to ask for help when you need it? Do you want a way to connect with other caregivers? ianacare might be the perfect solution for you. IANA stands for I Am Note Alone. Their mission is to encourage, empower, and equip family caregivers with practical tools and supportive communities, so no caregiver does this alone. They have a free app, a podcast, and webinars as ways to support caregivers and provide practical resources. To learn more about how this app works, visit ianacare.com.
FARF Family Services staff are available for one-on-one support as needed or desired. While we do not offer traditional counseling or case management services, we do offer support by assisting with information gathering, referrals to FA specialists and community partners, directing folks to helpful resources, providing education, establishing connection among peers, and by providing a listening and empathetic ear.
FARF is dedicated to providing online support and education throughout the entire year via our virtual FA Connect series. These free sessions are open to all caregivers and are a great opportunity to learn and to connect with other caregivers within the FA community. We’d love to see you there! Check out our events calendar to register for a variety of caregiver session topics.
Along with virtual sessions throughout the year, FARF provides two opportunities to meet in-person for support and education each year during the FA Family Meeting at Camp Sunshine and the FA Adult Retreat. While these meetings are also for individuals diagnosed with FA, FARF has committed to dedicating a variety of sessions specifically to caregivers.