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...

 

Hospice has worked with nursing facilities for many years now. Our relationship  and interactions with patients and their families is now better understood and better defined. That said, some nursing facilities still feel threatened by the presence of hospice. Naturally when something goes wrong it is viewed...

I am sharing this letter and my response because this family is not the only family that has carried memories, sometimes for years, of situations that occurred as their loved one was being cared for. As health care professionals it is a huge part of our job to educate, to explain what we are doing and why we are doing it...

Often dying looks painful to the people watching. Dying is a struggle to get out of the body. There are sounds that ordinarily would indicate discomfort but, when a person is actively dying, are part of the struggle. Just as the little chick works to get out of its shell, a person works to get out of their body. It takes effort to release from our body. That includes rattling and gasping sounds, twitching, random hand and leg movements, picking the air, facial grimaces...

Dying is not painful. Disease causes pain. If pain has not been an issue during the disease process then just because a person is actively dying does not mean they are in pain. If pain has been an issue during the disease process that pain is present to the last breath...

What is the aim of a life review? As a caregiver my aim is not to direct a life review but to be a presence, a listener, and a friend. If life review becomes a subject the patient wants to pursue (whatever words may be used...

Hospice can not take the experience and sadness of a loved one dying away. Our goal is to help the family create a sacred experience, to help their loved one have as gentle a death as possible, and when we have done our job well the family will have that sacred memory...

If the signs are there, get the referral and let a hospice professional determine if Hospice is appropriate. Three things I look for to tell me if it is time for Hospice are: 1. the patient’s condition is deteriorating in spite of the treatment that is being given. 2. You look at the person and say to yourself...

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...

There are other signs of approaching death that indicate a person with a disease (at any age) has weeks to live...

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...