Bursack: How do I accept that Mom needs hospice care?Mom knows that hospice means she has been designated terminally ill, though I don’t know how cognitively aware she’ll be when we put everything in place. Since she’s stated in the past that hospice is a good organization, I don’t know why I’m struggling with this.
By: Carol Bradley Bursack, INFORUM
DEAR CAROL: My mother is 82 and has been diagnosed with terminal cancer. She also suffers from mid-stage dementia. A friend of mine who died from cancer received wonderful care from an area hospice, and I’d like to see my mother have this kind of care. The problem I’m having is making myself go through the process. Mom knows that hospice means she has been designated terminally ill, though I don’t know how cognitively aware she’ll be when we put everything in place. Since she’s stated in the past that hospice is a good organization, I don’t know why I’m struggling with this. - Sheila
DEAR SHEILA: I like your insight that this is really about acceptance on your part. Try to understand that theory and reality, for most of us, can be different. Even though you support the hospice mission, making the decision to seek hospice care for a loved one is very personal. Give yourself time to grieve and accept the reality of the situation. You may also be interested in the fact that some people’s health improves under hospice care and they at least temporarily go off the program. Also, a person is free to go off hospice care at any time, should they feel they want to do so.
It’s sad, but our culture, often caught up in a “treat at all costs” mentality, has not been good about accepting that we all, eventually, will die. Sometimes the treatment for an advanced disease only attempts to extend life a short while, but doesn’t extend the quality of that life. Your support of the hospice mission implies that you want your mom to have as much quality of life as possible.
Each of us has our own view of what constitutes quality of life, but most of us would agree that extreme pain is not desirable. The aim of hospice care is for people to live their last months of life with the least amount of suffering possible. The time when people know they are dying can often be quality time with loved ones because their pain is controlled. Then, emotional fences can be mended and goodbyes said. It’s a time to reaffirm love.
If you have siblings or other family members, it will help everyone involved if they all understand the goal of hospice care which is to provide a comfortable and dignified end-of-life experience. Your local hospice will have information and staff members will be happy to talk with your family.
Living the remainder of one’s life well, rather than existing in pain, is what most of us want. For a terminally ill patient, that generally means comfort care for the body, mind and spirit. My condolences to you and your family. This is hard, but you are on the right track.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com.