Dear Barbara,

How does a person feel as a Hospice patient?  Everyone is waiting on them, they are unable to do things for themselves. They have to wear diapers and probably don’t want to be a problem for caregivers. Often, their well-meaning loved ones stay for long visits when they want to rest.

I don’t think there is a “one size fits all” answer here. I can only guess, not having been in that situation yet. What stands out for me is that whether we are facing the end of our life or have a serious illness or some sort of debilitation, how we react and respond is going to be according to our personality. It is going to be how we have faced other challenges and life situations.

Challenging life situations generally don’t change how we react or respond to others. Our personality traits are mostly just intensified.

So — if I am a very private person, I will probably have a challenge accepting all of the attention. If I’m an extrovert, then interacting with others can be helpful. You see where I am going with this. Look at the person, their personality, how they would react if they were well and that is probably what they are thinking and how they would want to be treated now. But even more so.

The one way of addressing these questions in the months before death is to ask, How do you feel about all this company? Do you want to talk about all the changes that are occurring?  It is important to give the person as much control over their living, their wants, their idea of comfort as possible within the circumstances of their inabilities. And that requires talking about the changes and how their life is unfolding.

The above applies to people before their labor begins. Once they are weeks from death, this world and its activities, its protocols, its people, and its interactions lose their importance. The focus is now on leaving. 

The person is sleeping most of the time and seems confused and “other worldly.” I don’t think they are thinking about themselves or what their wants or needs are.

Something More… about Slipping Into the Shoes of a Hospice Patient

The more the caregiver knows what to expect during the dying process of their special person, the more calm and sacred the months, weeks and days will be for everyone. Having the end of life guideline series bundle at the bedside for caregivers, friends and visitors to read and refer to will be a huge help.

Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.