I was honored recently to have been a guest on the Remember Me podcast,which provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. When the episode about my husband, Evan was released on Tuesday I heard from people who were touched by a part of the conversation that was about Palliative and Hospice care.
Most people know about Hospice. It is basically comfort care that is available when a person is expected to have less than six months to live. We are no longer trying to cure, we are seeking comfort. It can be scary to make the decision to go on hospice care because it is an acknowledgement that the end is approaching. That said, many people, including myself, regret not having started hospice earlier than we did because it so dramatically improved the quality of care for the person being supported.
Most people do not seem to know about Palliative Care. I certainly didn’t. According to the Mayo Clinic:
“Palliative care is specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness. It also can help you cope with side effects from medical treatments. The availability of palliative care does not depend on whether your condition can be cured.
Palliative care teams aim to provide comfort and improve quality of life for people and their families. This form of care is offered alongside other treatments a person may be receiving.”
In summary – both Palliative and Hospice care are meant to improve quality of life and pain management for the person being cared for. On Hospice, the person will no longer receive treatments aimed at prolonging life. That is the biggest difference between the two.
I highly recommend that when a person with dementia is no longer able to describe or attribute sources of pain that you ask your healthcare provider to introduce you to a Palliative Care team.
Everyone who is a dementia family caregiver would benefit from understanding what each of these are, how they differ, and when it is time to add Palliative or Hospice support to the care plan of the person being cared for.
Two resources I recommend to gain more clarity are this video from NIH, and this from Dementia Careblazers.
Remember that caregiving is hard, you are doing the best you can, and we are here to support you.
Take good care! Allyson
