Marilyn’s husband of forty years has been in hospice for fifteen weeks. She’s lonely, exhausted and a bit shocked that he’s still hanging on.
Marilyn’s only daughter flew in for two weeks, but had to return home. To bridge the miles, Marilyn took her husband’s picture...
This post comes from our friends at Courageous Parents Network.
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A few years ago, before Courageous Parents Network existed, I asked a seasoned pediatric palliative care...
By John Schall, CEO, Caregiver Action Network
We often say that family caregivers should not only be acknowledged as a part of the health care team for their loved one with a disability or a chronic condition – but indeed should often be recognized as the most impo...
If you care for a loved one who has a rare disease, you are familiar with the struggle for support.
Because your loved one’s disease is probably very severe, chronic, degenerative and life threatening, he or she probably has had to leave, or will have to leave the workf...
This video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families.The seventh Rare Disease Day takes place on 28 February 2014. "Join Together for Better Care" and participate!
by Toni Mathieson
We were always honest with our daughter’s big brother, responding to his questions about her illness candidly, but carefully. We wanted to be in control of the information he received, however in this internet age it was difficult to do. We explained t...
by Toni Mathieson
Palliative Care
Our daughter was diagnosed with the progressive and fatal condition Niemann-Pick Type C disease when she was just three months old. We were then thrown into a never ending round of appointments with the long list of professionals that wo...
by Toni Mathieson
Our daughter attended a Special School for children with profound and multiple learning difficulties. We did a lot of research before deciding on a school – it was difficult to navigate the realm of Special Educational Needs too, and also to secure a S...
Listen to how one rare disease caregiver stayed in touch with the extended family.
One day we are a happy family living the dream, then after one doctor’s visit we are thrust into the cruel world of being a family caregiver of a child with congenital heart defect. After loads of tears we are hit with the emotion of guilt and anger. And we ask ourselv...
