Something to Think About.

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 have figured out about living and dying is true or is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.


Faith and the Dying Process
by Barbara Karnes, R.N. | March 20, 2017

Dear Barbara, How has faith entered into the dying process?

What does “faith” mean? I am going to say, for the sake of this blog, that faith means religion and the various dogmas it teaches. Although “faith” could mean “a spiritual belief”.

It seems a lot of us want faith to be part of the dying process. Our idea, and maybe our wish, is once we approach the end of our life  we will believe that God exists, that we are accountable, that we will go to a good place and this will make our dying easier, maybe even less scary.

I’m just not sure if that really happens. Yes, for some it may but for most of us I think we approach the end of life with whatever beliefs we have gathered throughout our life. I don’t see people reaching death and suddenly changing their ideology. If they had “faith” they may find comfort in its teachings. If they did not they may find comfort elsewhere. It does not mean faith always comforts and not having faith brings discomfort.

Going beyond religion and God/Spirituality I do believe on many levels (conscious and unconscious) we question our life, our relationships, our purpose. A “what have I done, who have I touched” review. In that evaluation we may look at our spiritual beliefs. It is just that most of us don’t change those beliefs. Some of us do return to the religion we have been lax in attending and practicing.

One of the key aspects of approaching death I almost always see regardless of an individual's belief system is fear. We are all going to be afraid to some degree as we approach death (degree being the operative word here). That fear often gets confused with our belief systems. Some who, in their healthier days, rejoiced in the idea of being with God, become fearful as death approaches and think it relates to their belief in God. I suggest that that fear has nothing to do with God but relates to the humanness of facing the unknown.

Religions that teach heaven and hell affect us as we approach the end of life. If we believe we have not lived up to our religion’s expectations of entry into heaven we may be hesitant to let go of this life (We have limited control over the time that we die. See Gone From My Sight).

If prayers brought us comfort in living then they will bring us comfort in dying. If we did not relate to praying in living then we will not necessarily relate now. We die the way we have lived. We don’t change who we are just because death is near.

All of the above is why it is so important for us as healthcare providers to keep our beliefs to ourselves. We are at the bedside to support,  and guide, bring comfort, not to bring change. It is all about the patient/family and nothing to do with what we believe.

Something More about Faith and the Dying Process......

In my book, The Final Act of Living, Reflections of a Longtime Hospice Nurse, I have a chapter on Spirituality.  This may be a helpful resource.

A Chemical Straight Jacket, Dementia at End of Life
by Barbara Karnes, R.N. | March 6, 2017

Dear Barbara, Will you talk about a chemical straight jacket at end of life? My mother is a dementia patient in a memory unit. Hospice now. They are giving increased Ativan & morphine to "keep her comfortable". We are in very last
days now. I don't want her to suffer, but somehow this seems wrong.

I have not heard the words “chemical straight jacket” before but I see the implication---controlling patient movements with drugs rather than physical restraints. Nursing facility regulations are very strict now about physically restraining agitated patients. Medication regulations aren't as strict if you can justify the reason.

I do not think there is a need for narcotics just because death is approaching. Dying is not painful. Disease causes pain. Dementia does not cause pain unless the person is actively hurting themselves or there is another physical condition that causes pain.

Part of the natural dying process is restlessness. There is a picking of the clothes and bed linen. There is an agitation of just not being settled, tossing, and turning. If that restlessness is not causing harm or putting the patient at physical risk then I do not feel medications are necessary. If the restlessness puts the patient in harms way (falling out of bed, injuring themselves) then Ativan or some relaxant seems appropriate.

Increased use of narcotics and relaxants as end of life approaches has become quite common in the end of life area---much to my concern. Why is this happening? One: end of life has become more medicalized, more intertwined with the medical system. We seem to have forgotten that dying is not a medical event. It is a social, communal event. (Another whole blog article) Two: I think there is a lack of understanding of the dying process. What is natural versus what is pathological (even among medical professionals). With this lack of understanding is the deep desire to keep a person comfortable. To help them approach death in as comfortable a way as possible. Not ending life but providing comfort until death comes. I think this is admirable but based in lack of knowledge. Our end of life professionals need to know this.

When working with end of life what we need to remember is to treat pain when present with as much medication as necessary to keep a person comfortable. And we continue giving that medication until the person’s last breath.

When a person is in the labor of dying and pain is not a part of the disease process, we do not need to begin a pain management protocol just because the person is dying.

Something more...

I have a new resource that would be perfect for this situation.  It's called HOW DO I KNOW YOU? Dementia at the End of Life.  It is specifically written to help families understand their loved one's process in the final months before death.  NEW RULES for End of Life Care is my DVD kit that has a whole section on narcotics at end of life.  So helpful for families during the final challenging weeks.

Laboring To Leave ~ Difficult Breathing at End of Life
by Barbara Karnes, R.N. | February 6, 2017

Dear Barbara, I would like to know why the breathing pattern is different at
end of life. My Mother had fast and labored respirations. She did have
COPD, but my Dad had the same breathing pattern and he did not die from
COPD. This was very disturbing to me. Are they suffering when breathing
like that?

The irregular, difficult breathing that occurs at end of life frightens most
people. As we watch we feel something bad is happening. Our loved one is
hurting, struggling, suffering, and of course this is disturbing to us.
In the hours to minutes, sometimes even days, before death, a person’s
breathing changes. First it becomes fast, often with congestion, and then
gradually the breaths becomes slower and slower. As breathing slows (ten
times, or even six times, a minute) the person actually breaths like a fish,
with their mouth opening and closing. This can be frightening if you don’t
know that it’s normal.
The congestion that occurs before death will depend upon how hydrated or
dehydrated a person is. The more fluids in their body, the more congestion.
Sometimes changing their position (laying them on their side) will help to
redistribute the fluid, and the breathing will sound quieter. Suctioning the
fluid generally does not eliminate it. The bottom line is that congestion and
difficult breathing are a part of the normal dying process.
Is the person suffering? I think not, although it appears that they are. By the
time they are hours from death their awareness of what is going on around
them and of their body has diminished. What I envision is the little chick
working hard to get out of its shell. In the hours before death from disease
our body is shutting down. It is laboring to release itself from this planet. It
is a struggle, just as the chick is struggling, but I don’t think either the
person or the chick are suffering.

Something more about Laboring to Leave:

Difficult breathing during the natural dying process is only one of the many changes that we will witness when a person is dying. It's comforting to know what to expect during that process.  Gone From My Sight (The Little Blue Book) is a "road map" of what will occur during the dying process.  The Eleventh Hour is the companion book and is more specific about the changes in the last days, hours, minutes, seconds and just after death.  These two books, along with your nursing staff, will provide knowledge so that you can better support the one who is laboring to leave.

Tears on the Job
by Barbara Karnes, R.N. | January 9, 2017

Dear Barbara, 

I'm an older nursing student who is starting a new position as a NA2 in a
lovely hospice facility. I've never experienced death from a clinical
standpoint. I have a concern. We, as hospice caregivers, will surely
become emotionally attached at different levels to our patients. How in the
world do we handle repeated losses of our patients from an emotional
standpoint. I know we will shed tears with each one, but what is the best
strategy to keep one’s emotions in check and be a beacon of strength for
the dying patient and then for the family after the passing?

This is such a powerful question. How you address it will affect how long
you remain working in hospice and end of life.

What stands out is your statement, “I know we will shed tears with each
one.” Actually, not necessarily. In fact if you cry with every death you will not
be able to sustain your balance. There definitely will be times when a
situation, family, or patient touches you on a deep level and you will cry. An
example: I walked into a room with a college boy and his girlfriend sitting on
a hospital bed listening to music. Before I could even be introduced I burst
into tears and had to leave the room. As his mother was standing with me
in the hall I told her I had a college son the same age and I saw and felt
what it would be like to have him in that bed. We talked and actually
became friends when all was over. The point I am making is that something
touched me on a personal level. If that depth was present with every
patient and family we would not be able to continue the work.

Death is not really a part of most professional caregiver’s job descriptions.
It IS for those of us who work with end of life. Most of the patient/families
we care for, we care for as people who need assistance but to whom we
are not personally attached. We guide them, support them, care for them,
but not on a personal level. We care for them on a professional level that
includes kindness, compassion, empathy as well as medical and end of life
education. This is our job and we can do it well without getting emotionally
involved.

We have to acknowledge that we are swimming against the current of
mainstream medicine. Death for those who work in end of life is not failure
or the enemy. It is the ending of the work we do. Our satisfaction in the
death of a patient is that we have helped create a sacred experience and
memory. A memory that will influence a meaningful and balanced grief
process. With our patient’s death we want to say to ourselves “job well
done”. No tears are necessary.

There will be times when something happens in the course of your work
that will shock you to your core. I remember a patient killing herself in a
horrific manner and having to contact our hospice psychologist to debrief.
There will be situations that you must retell, debrief, and share with
someone who can listen (not offer words, there won’t be any), but allow you
to unload so that you can move forward to the next patient.

It is being able to share with those who know the challenges of our work
that will keep us healthy and able to continue. It is not a sign of weakness
to share. It is a part of our responsibility to ourselves. On Friday nights after
work, a group of nurses from my office would meet at a local establishment
for beverages and conversation. There was a companionship of likeminded
and like-challenged people unwinding. It showed each of us we
were not unusual in having what ever feelings we were having, that we were normal, that we were not alone.

Something More about Tears on the Job...

It is a particular calling for those of us working with end of life.  Perhaps more challenging than other kinds of caregiving.  With the high number of turn over with end of life caregivers, I thought that our community needed support in how to take care of ourselves.  From that vision has come my new DVD, Care for the Caregiver which will launch in February.  There will be more information on my FB Group Page, End of Life Care and Bereavement in the coming days.  

When a Dream is Shattered
by Barbara Karnes, R.N. | December 27, 2016

I am printing this letter and my reply at this holiday season because I believe this man is not alone in his feelings of hate, anger, and regret. Maybe by hearing his story others will find understanding. I don’t talk about my personal experiences, not the place of a professional caregiver. However, sometimes sharing your story helps create a bond of understanding and possible healing.

Dear Barbara,
This email may get a little long, please forgive me. Through the years I have never found anyone I could talk to, one that could truly understand but you!

I have written to you before, the latest being when I told you what it was like to watch my wife being forced to carry to term our anencephalic daughter.

This article "Stuck in Grief" also hits home because it was 38 years ago on December 22, 1978, that she was born & died.

On that day, as I sat outside the delivery room, I cried, I prayed to both God & Satan they could have me, my soul, my being, any and everything of me either wanted if my daughter could just be normal healthy & whole. Obviously bargaining didn't work. So where was God & where was Satan. As you cannot have one without the other. How could a just loving God allow this to happen to a child. So much for there being a just loving God.

At that moment I started hating God, Satan, preachers, religious leaders, politicians, everyone & Christmas. And 38 years later I still hate the holidays, I hate Christmas most of all! I find absolutely no joy at all in any of the things to do with the holidays. As people bounce around with all their joyous b.s, they have no idea of the hurt & anger & heartbreak that is within me. And when you try to share they either don't want to hear or don't care because it doesn't affect them.

I asked my wife's doctor to allow me to view my daughter, which he did, but I could only stand & stare. He offered her hand to me but I couldn't take it (a decision which has haunted me ever since). I held my most prized bird dog as he was being euthanatized so he would know he was loved & not alone for his final breath & yet I could not even hold my dead daughter's hand.

It was certainly not a very bright or fun Christmas time. And my own birthday was coming up just 7 days after my daughter died.
Every year I always say nothing good ever happens at Christmas & nothing ever does.

I don't remember ever sitting down with my wife, holding each other & actually crying. We allowed the hospital to use whatever was viable for donation or research after they performed an autopsy (at my request) so there was no funeral, that decision still haunts me too! I know I made the best decision I could at a really bad time but it doesn't make it any easier. So I guess the crying and venting you see at funerals as a way of relief I deprived myself of.

My wife did say that our daughter did come to her in a dream & tell her "she was fine & happy &...."  How do you question someone's dream, it's her story who am I to call her a liar. But nothing like that has ever happened to me. So needless to say people who claim to have had things like that or that God performs miracles just make me want to scream at them that they're full of b.s.

People have said things happen for a reason, 38 years later I still have never seen or been given any enlightenment as to why things happened. And to be honest it really ticks me off when people say it too.

I understand what it's like to be stuck & not able to get past something & have no idea of how to do it. Those who say just lay it down have never been through it. If they had maybe they could have a glimpse of that person's feelings.

People have told me "hating " is a waste of time & only destroys you. The people you hate don't know it, & they could care less if you do hate them, because it doesn't affect their lives.

I know all this to be true, but I just cannot stop those feelings of hate.

As I finish this long email I look at the clock & I know in a few hours it will be the 38th anniversary of my daughter birth & death. The hate, anger, and sorrow is still there and it's there every year & won't go away.

I'll end this now with an apology & a thank you. Apologies because it is so long & thank you because you took the time to read it & most of all because you understand.

-----------
I am glad you feel comfortable enough to reach out to me during this life challenge that becomes more intense at holiday time.  Here is my two cents worth:

I don't know that there was a reason your daughter died at birth and I don’t believe that everything happens for a specific reason. I do believe there was a life lesson in everything that happens to us. For you, your wife, and your other daughter there was a lesson. The lesson was how to go on living when a dream is shattered, when life did not go the way you planned or wanted. That is the lesson. In looking back on your life it looks like you handled your lesson with hate (your words), guilt, and regrets.

It is not too late to examine the lesson, to rethink your reaction to it and to put all those tormented thoughts and feelings to rest. I am not expecting you to change but am saying you have the opportunity, if you want to take it, to reevaluate the lesson life gave you.

You may be thinking how can Barbara say these things to me, she hasn't experienced the loss that I have. She doesn't know what it feels like. BUT I do. I too had a baby girl, actually twin girls, die. They died in my belly a month before I gave birth to them. I knew for a month they were dead in my body. I did not see or hold them when they were delivered, no funeral. I delivered them, spent the night in the hospital and went home empty. I was just given a card with "Baby girl A and Baby girl B" written on it. I know your pain of anger, feeling cheated, wanting to blame someone other than myself.

What I have written to you is what I came to believe in order to move on with a healthy life.

In the Blog article "Stuck in Grief" I suggest writing a letter to the person that died and saying from your heart what you need to say that you didn't say before. I recommend that you write your baby girl a letter. Pour your heart out to her and offer to her your wanting to let go of all the negative feelings you have been carrying all these years. Tell her, from the bottom of your heart, how you want to be free of this heavy weight you have carried all these years.

You might also start a yearly ritual of blessing your daughter. On the day of her birth and death light a special candle and let it burn through out the day. Talk to her, tell her you miss the opportunity her life would have given you both. Then at the end of the day blow out the candle, put her to rest, until next year. Give it a try. I think you have carried this long enough.

Something more about When a Dream is Shattered...

We often feel quite alone with our "dark" feelings.  We need community.  Others who can listen, offer ideas and support.  That is why I have a FaceBook Group, End of Life Care and Bereavement ~ a place where we share.  I hope you will join us.

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Blessings!