I see families devastated by not being able to be with their loved one as they are dying. I am writing this for any person who is faced with a loved one dying alone in the hospital. My hope is that some understanding hence comfort can be found among these words. This guidance can also be used by healthcare workers when they face the difficult job of telling families they can’t be present. These ideas can’t fix this horrific situation but they can bring a bit of understanding and “something to do” to an otherwise bleak message.

Touch in with the families, “What’s happening? Do you need anything?” Use the same volunteer for each family to develop confidence and bonding. You are saving your staff while providing a sense of security  to your families...

Your book explained so much. Mom's dying was almost exactly like you explained in your book. In hindsight, I am unsure why we, her family, were not advised, taught, or even given a clue about what was inevitable. We truly kept on fighting and advocating for her to get what we thought to be the best medical care she could get all the while thinking it would make some kind of difference in this outcome...

We really aren’t doing people any favors by not being honest with them. We aren't giving their families the opportunity to do and say what needs to be said and done. We are depriving people the opportunity to put their life in order, to say “goodbye and I love you”...

There have been many changes in hospice care since it began. Some for the better, some not so much. What I am suggesting as representing a “good” hospice is becoming harder to find. My hope is that by setting the standard high, and...

I know it is scary to think of using hospice. It says death will happen soon, but there is such guidance and support to help that at least ask for an information visit. A hospice referral is a win-win. You win if hospice says it is too soon and ...

The guilt, frustration, uncertainty, and helplessness of family caregivers is as much a problem to our healthcare system as the patient with dementia...

You have to walk the walk before you can talk the talk. Learn from your patient/family interactions. At the same time read everything you can get your hands on...

Dementia isn’t a terminal illness in that it doesn’t have a limited prognosis. It is like dying from old age, it takes longer. Alzheimer’s, or any form of dementia, is difficult to gage as to approaching death. The personality changes and withdraws often over a period of years and sleeping habits are...

...You really don't need a doctor or nurse at the bedside when someone is dying. You need someone who understands the natural way people die and can educate and guide those present through the experience. So, first, you are going to select employees that don't view death as a medical emergency, as a medical failure, and particularly don't view death as bad. Sad for everyone, yes, but not bad...

 

...I remember being with my mother in my hospice Medical Director’s office. He was explaining to my mother his medical findings as they related to her illness. I, being a hospice Director and in the medical field, didn’t understand what he was talking about. My mother sat on the end of the examining table nodding her head up and down indicting that she understood. She didn’t....

So many factors affect the length of our labor to leave this world that it is imprudent to put a specific time frame on approaching death. The closest we can credibly come to predicting when death is going to arrive is to guesstimate the time in months or weeks with no numbers attached...

It is certainly not within our role to act if a person, in the pain of the moment, wants help in ending their life. In the “pain of the moment” are the operative words here. I cannot tell you the number of times I have heard that plea in the throngs of pain, and the relief when that pain is relieved and life continues...

For healthcare professionals it is often a balancing act to care for patients and then deal with the sense of futility that is triggered when they are doing their job...

I can say that dementia doesn’t play by the rules for end of life. Withdrawing and sleeping can be present for years and does not signify approaching death. Not eating and not swallowing are your key signs. If we don’t eat, we can’t continue to live. Always offer food (be careful of choking), but don’t force food.

Living with someone who has dementia is a daily challenge. It requires the constant reminder that this person is not who they once were. It presents the challenge of learning how to live with the person they have become...