Something to Think About: a blog on end of life

Barbara's blog

For the last 30 years all of my patients have died. I will be sharing observations and ideas that I have gathered from working with people in their final months of life.

You may not agree with what I am saying. I don't pretend that what I've figured out about living and dying is "capital 'T' truth" or that it is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.


Signs of Approaching Death with Dementia
by Barbara Karnes, R.N. | March 15, 2016

Barbara, Can you finish the portion on dementia and dying that was not finished on your The Art of Manliness podcast?

There are just two ways to die, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it. If it didn’t it would be fast death.

The process of a gradual death from disease takes two to four months (old age with no disease takes longer). Three things are the sign posts that say the dying process has begun: decreased eating, increased sleeping, and withdrawal. These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.

Weeks before a gradual death there are signs we look for that come in addition to decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before death a person looks frail and sick but does not necessarily look like they are dying. In the weeks before death the person now looks like they are dying. (See Gone From My Sight  for a description of all the signs of approaching death).

Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Someone with dementia can withdraw from this world’s activities for years, by being not interested, non-interactive, uncomprehending, unfocused. Someone with dementia can begin sleeping more, or even sleep all the time, and not have entered the dying process. Again, they don’t play by the rules.

Their food intake can decrease but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat we can’t live. If the decision not to use a feeding tube is made then the dying process starts. ALWAYS, ALWAYS offer food. You don’t just one day stop feeding someone. Generally, at this point the person is struggling against eating. We are the ones that are concerned. The person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead.  Also beware of choking.

When the decision to not use a feeding tube has been made, depending upon the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.

Something more...

Although I believe that I have answered your question, I wanted to link another blog article that I wrote to help solidify the information above. Alzheimer's Dementia Patients and Hospice.

It's About Humanity
by Barbara Karnes, R.N. | March 7, 2016

In the End of Life Care and Bereavement Group I have on Facebook some of us who are or have been hospice nurses were talking about what we, as hospice nurses, had or have done to encourage and assist in the fulfillment of the last wants and dreams.

I have helped a woman go to Las Vegas to gamble one last time, helped a man return to his beloved Hawaii. I’ve smuggled a cat into a hospital, instructed and advised a family on how to get Grandpa to the lake in another state to go fishing and how to bring him back if he died across state lines.  I’ve ordered crawfish from New Orleans for one last taste (he only ate one but it was the best he had ever eaten), helped a man walk (in a wheelchair) his daughter down the aisle to be married. Yes, I went to the wedding.

I drove people to the airport, picked up postal deliveries, took patients to church and to the Mall. None of these things were part of my job description---or were they?  Bringing quality of life, helping a person live the best they can is part of the job description and if the above assists in that process then yes, I was doing my job as a hospice employee.

End of life isn’t about treatments and procedures. It is about humanity, about tenderness. It is about finding something good in the life that is left.

As I reread this my memories above seems small compared to the number of patients and their families I have worked with. It is sad that I didn’t  ask more questions and help more people fulfill a “if I could do anything right now it would be----” or “ life would be really good right now if I could---” dream.

When my mother was on hospice I used to ask her each night as I tucked her into bed, “What was good about today?” That is a question we could ask  our patients, their family and ourselves as well. What was good about this precious day that we have?

Something more...

When my mother and step-father were diagnosed with lung cancer, I wrote A Time To Live- Living with a Life-Threatening Illness.  When it is ordered with the End of Life Guideline Series, we recieve many emails and notes telling us how useful the book is to their dying loved one.  

Living With The Maybe
by Barbara Karnes, R.N. | February 29, 2016

Living With The Maybe

Grief is a reaction to loss. Loss equates to a death, a death of something or someone. Death comes in many ways, many forms. There is the death of a relationship, the death of a job, the death of a dream, a goal, or an idea. And there is the death of a person.

We tend to think the death of a person is our most difficult loss, our biggest loss. It may be our biggest loss because it is irreversible but maybe, just maybe, the death of a relationship is the hardest loss.

Not to diminish the emotional pain that comes with physical death. Our grief is devastating. It physically hurts, our heart screams. We are angry, fearful, isolated, and oh so sad. We are forced to figure out how to go on living with a huge piece of what has been our life missing. We are forced to recognize that our life will never be the same again --- because this person will never be physically in it again.

The grief that comes with the death of a marriage or a relationship is very similar to the grief that comes with the death of a person. It physically hurts and our heart screams. We are angry, fearful, isolated, and oh so sad. We are forced to figure out how to go on living with a huge piece of what has been our life missing.

We must recognize that our life will never be the same again BUT now we have an added piece to our grief. The person, who is no longer in our life, might be in someone else’s life. We might see them on the street or Facebook (particularly if we check their Facebook page, which we do). Added to this loss we have a maybe attached. Maybe, we can get back together, maybe he/she will change, maybe he/she will want me back, will come back. Maybe I’ll bump into them when I go to the grocery. Maybe, maybe, maybe!

The death of a person forces us to live without them. Our mind eventually recognizes we must adjust. Time begins to ease the pain, to fill in the space with other thoughts and gradually, ever so slowly, we learn how to live with our grief. We don’t recover but we do learn how to live without this person in our life.

The death of a marriage or a relationship doesn’t force us to do anything. It allows our mind to tease us, to tempt us into believing, hoping, there has not been a death at all. This kind of death pulls on a different aspect of our personality and life lessons. It gives us the opportunity to address self esteem, control, and discipline issues (not tracking on Facebook). And as we work with our grief  time begins to ease the pain, to fill in the space with other thoughts and gradually, ever so slowly, we learn how to go on living.

The Highs and Lows of COPD
by Barbara Karnes, R.N. | February 22, 2016

Barbara, my husband is dying with Chronic Obstructive Pulmonary Disease (COPD) and its complications. At this time I believe we are pretty early in the process. My question is how do I fight the roller coaster I am on; one day up the next day down - on and on. I haven't exercised in weeks. I'm eating more than I need. Not reading because I can't focus. I'm losing my husband of 53 years. I'm not looking for easy answers - just some reassurance that "this too shall pass ".

COPD is a very challenging disease. A patient can look and feel like they are dying right now and still feel that way 10 years later. Because of this it is very hard to predict a timeline.  So, you as a care giver MUST learn how to take care of yourself. You MUST figure out how and when to exercise or read (if that is what brings you balance). You must figure out what you need in your life. We caregivers often sacrifice our wants and needs for the needs of the person we are caring for. When we do that long enough we become resentful and angry as well as worn down and out.

Since you are early in the disease process you can talk with your husband about you, your fears, needs, and wants. The two of you can figure out how to keep you healthy and well and at the same time enjoy the relationship you have spent 53 years building. If you don't help each other through this (I mean that all the concern isn't just centered on him) then the time that you two have together is going to be tainted by the effect the disease is having on you as well as on him.

Some ideas for taking care of yourself:
* Find a friend to whom you can talk and complain. Not one with answers, only you have your answers, but one who will listen and support you.
* If you need a break and your husband can’t be left alone, find or hire someone to come in for a few hours.
* Your sleep is important. You can’t do a good day’s work if you haven't slept well during the night. A doctor recently told me for every hour of sleep you get before midnight  you gain 2 hours worth of sleep. If you have to sleep in separate bedrooms, so be it. Sometimes a good nights sleep is all you need to have a good day together.
* We tend to eat differently when we are stressed, and that is not the time to add more by depriving yourself of “comfort” food. That said, because you are in this for the long haul you don’t want to end up putting your own health in jeopardy. Don’t have “forbidden “ foods in the house. If they aren't there you can’t snack on them. Maybe allow yourself a treat each day, something to look forward to. You can also become proactive by both you and your husband deciding to eat more healthy foods, and that is something you can do together.

"This too shall pass" is not the saying we are looking for here. When it, (whatever it is) passes your husband will be gone as will all opportunities. "Make today count" would be a good saying or "What did we trade a day of our lives for?" Really all we have is this moment. NOW.  Figure out how to enjoy it.

Love your husband, be patient, understanding, caring, tolerant. AND be  tolerant, caring, understanding, patient and loving with yourself.

This life challenge is for the both of you, not just for him. Slow down, check out priorities, do those things that have meaning and are important, let the little stuff slide away.

Something more...

When my mother was diagnosed with lung cancer, I sat down and wrote, A Time To Live.  I wanted to help her make the best of the gift of time she had.  

Unstoppable Terminal Delirium
by Barbara Karnes, R.N. | February 16, 2016

QUESTION: What is terminal delirium?  I have never witnessed a resident with such a severe case until a few weeks ago. His restlessness was unstoppable until he passed.

The American Family Physician website:  http://www.aafp.org/afp/2001/0915/p1019.html states that “Delirium is a disturbance of consciousness and cognition with a sudden onset that may be accompanied by increased psychomotor activity. This symptom occurs in 25 to 85 percent of terminally ill patients. Mental status changes can be very distressing to the family, who observe agitation, apparent fear or what they believe to be uncontrolled pain in the patient. Delirium often heralds the end of life and may require active sedation in up to 25% of patients.”

In nonmedical words I would call terminal delirium confusion with or with out restlessness. In the weeks before death a person who has entered the dying process is sleeping most of the time. You can wake them up and sometimes carry on a conversation but at other times there is just a blank stare. They often begin talking about things that don't make sense to us, seeing people that aren’t there (sometimes people that are already dead), or thinking they are someplace other than where they are. They may be picking the air or their bedclothes. They may have a generalized restlessness about them.

We, the watchers, get concerned about this behavior because it is “not normal”. It is not what people do. This IS what people who are dying do. This is “normal behavior” for dying people.

Why does this happen? We don’t really know. Perhaps it is that because the person is sleeping most of the time their dream world has become their whole world, their reality and they are talking about it. Some have good dreams and some have unpleasant dreams.

Why do we dream? Is our subconscious talking to us.? As we approach death fear is in our mind on many levels and I think some of that fear manifests in dreams, confusion, and restlessness.

Decreased circulation and diminished oxygen intake can also cause restlessness and confusion. What we need to remember is that the body is shutting down. Nothing works right. The body is losing its ability to function and maintain itself. The mind is wandering and is not focused. It is withdrawing from this reality. Again, the dream world is their current reality.

What do we do about terminal delirium? Nothing, if it is a gentle agitation and restlessness, a harmless confusion. Medicate, if the agitation is severe enough that the person may fall out of bed or hurt themselves or others.

We need to keep our goal in mind when caring for people at the end of life. It is to allow a gentle, natural death to occur. We know the person can’t be fixed and that death is inevitable. We are not hastening death. We are providing support and comfort to the patient and those present so that this final act of living is a gentle transition.

Something more...

Caregivers, family, loved ones need to have a clear understanding of medicating for end-of-life vs medicating for someone who will get better.  Terminal restlessness often calls for medicating.  I talk about caring for the dying vs caring for the fixable in my DVD kit, NEW RULES for End of Life Care.   You may find many answers there.

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Blessings!