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”...

Dementia is like a road map with many, many roads that eventually lead into a city. Each road is different, each road is of varying lengths and offers various views but all enter into the city at the same place. That place for my dementia analogy is when a person stops eating...

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...

 

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...

Be the best hospice you can possibly be, provide the highest quality of care with the most compassionate, caring staff your area has to offer. Build a reputation within the community not of how many patients you serve but what kind of compassionate, “we go the extra thousand percent for our patient”, care you provide. Build a reputation within the community...

When living with a life threatening illness we are eating for two---our physical body and our disease. In most cases the disease eats before we do. If we don’t eat, the disease still does. Nutrition will not keep a person alive indefinitely. It does not stop the disease progression. If we have a terminal illness...

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.

My message throughout all this time has been to educate, educate, educate. Educate anyone who will listen about how people die. To help people understand how death comes, what it looks like, (a part of life we will all experience one day) is my focus, to neutralize the fear we all bring to approaching death. With my desire to teach as many people as possible I have created a new end of life educational film, This Is How People Die.

...Fortunately, I suppose, my mother is now bed-bound and we were able to
get Hospice to help out, so she now fits the bill for a 'model patient'... but it
still seems one nurse can wreck her entire day with a bad attitude at
changing time or bath time. And family (which is me) must try to piece back together a mindset that keeps her contented and unafraid. this is a sad time of life. And I do have the Nursing Home Blues, quite regularly...

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...