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.


"I Don't Want To Talk About It"
by Barbara Karnes, R.N. | May 31, 2016

 Dear Barbara,  When my doctor brother received his diagnosis of inoperable cancer he told us he did not want to talk about his illness, just life. This is so difficult for all of us. Could you write about why people close up and about what to do?

We die according to our personality. We deal with our approaching death in the same way we have handled other challenges in our life. Our personality doesn’t change it becomes stronger, more defined in the ways we have addressed living. Think about your brother's personality and the manner in which he has lived his life. See if his reaction to his life threatening illness is the way he dealt with his other challenges. His response seems very dogmatic, almost a form of denial, also unemotional. It certainly is a way of keeping people distant.

For some people they just don’t want to be constantly reminded of their frailties. They don’t want people to tell them what to do to get better (when most don’t know what they are talking about anyway) and they don’t want to hear how good they look (when they know they don’t). Often illness and how “we are” becomes the only topic of conversation. Your brother may be wanting to avoid that from happening.

What to do? I guess you have two choices. Honor his wishes and play the game of not talking about this life challenge or have a conversation with him as sibling to sibling. Tell him your feelings and your need to have an open talk with him. Tell him how other family members are reacting. Ask if he can help all of you deal with his life situation. If he didn’t know his life was ending and there was a family occurrence would everyone ignore it or would they come together to support each other? 

We often think  because a person is facing the end of their life we have to do whatever they want us to, regardless of how it affects us. We treat them as we treat a very spoiled child--do what they want so no one is uncomfortable all the while everyone is uncomfortable.  I think it is perfectly acceptable to have an open, honest talk with your brother about his approaching end of life. Have the conversation and then come to a compromise so that both of you (and the rest of the family) can find a comfort zone that satisfies everyone.

Something more about "I don't want to talk about it"...

Fear is powerful.  Perhaps reading A TIME TO LIVE, Living With A Life-Threatening Illness, your brother could gather some tools to help him with his gift of time.  He would better understand what was happening and reduce his fear.

Grieving for Grandma
by Barbara Karnes, R.N. | May 23, 2016

Barbara, My husband's 94 year-old grandma just passed.  Our family has lived with her for all of my daughter's life.  We are strong in faith but I was wondering if there are more of your books available for the grieving process or others you would recommend as I have a child grieving as well.

Children and their grieving process is affected by their age and their maturity level.  We all grieve, no matter our age, but our understanding of this normal life experience varies with age.  My Friend, I Care, my grief booklet, addresses the normal grieving process and is written simply.  I'd say anyone, adult or child, with a reading level of 4th grade will benefit from it's information.

I have two children's coloring books, ( I am Standing Upon the Seashore and The Tree of Life ) which explain dying and death through poems, each with an analogy.

Jim Boulden has age specific booklets for children.  You can find them on Amazon.

Something More about Grieving for Grandma...

In New Rules for End of Life Care, I talk about how families used to live in multigenerational houses.  The circle of life was played out in a normal, natural way. There are births and their are deaths.  It pleases me that your daughter has had the good fortune to live in a multigenerational home.

 

Tired of Fighting
by Barbara Karnes, R.N. | May 18, 2016

Barbara, I have a 23 year old daughter that has a chronic illness. She says she is tired of fighting. I don't want to lose her. I am lost.


Having our children hurt and struggling in life can be devastating for us parents. There is such a helpless and even hopeless feeling in watching our adult children with their challenges. When they were little we could kiss the hurt and make it better--- now what do we do? Kisses aren't enough.

As a parent of adult children, I have found that one of the hardest parts of our relationship is to support them in their choices when I would have chosen something different for them. I have learned the hard way that I can offer ideas but then must be quiet and let them make their own choices. They, and I, have to live with the consequences of those choices. Oh so tough for a parent to do. When it comes to life threatening situations we can still only offer our ideas, support, and love.

My suggestion is to keep her talking. Talk about how hard it is to live while being sick. Help her find joy in each day (even if the joy is so small she can barely find it). Help her avoid being isolated from others (too much time alone leads to dwelling on how hard life is, instead of finding good in the day that you have).

For you, find a friend to share your feelings with, one who will listen to you as you share your fears and frustrations. In helping your daughter find joy, you will also find it.

Remember LIFE is a terminal illness. We are, all of us, dying each day. It is what we DO with each individual day that has the value, not how many days we accumulate on this planet. I talk about how, in the parent's handbook, there is a rule that parents must die before their children. When that rule is threatened or gets broken the loss or idea of loss is incomprehensible. 

Something more about tired of fighting...

I want to invite you over to my facebook group, End of Life Care and Bereavement.  The group is filled with like-minded people who, if you want to share about your challenge, will respond with care and support.  

 

Caring for Mom at Home
by Barbara Karnes, R.N. | May 2, 2016

Barbara, I am caring for my Mother in our home. She is in denial over her situation. She is bed bound but insists she is going to walk again and go back to her apartment and live on her own. I want to be encouraging but she will decide she wants me to get her up and go for a walk. When things are not happening she gets frustrated and that frustration turns into anger towards me. I know she loves me and that we just tend to lash out at the people we love the most. I wish that we could somehow let her stay in this denial but it is not turning out to be a happy or positive place. She is always waiting for tomorrow to be a better day and realistically her best day now is as good as it is going to get. 

Another problem we are having is that she is not being honest about new pains and symptoms. We have nurses coming in daily and also have Hospice involved. She takes very little pain medication as she "is afraid she will become addicted to it.” The nurses and doctor have told her over and over that she needs to take the medication when needed but she explains everything away. The last of our worries is that she doesn't want to pay for any of the things needed to take care of her.  She thinks she doesn't need some of these things, but for her own comfort and to care for her properly they are a must. So my husband and I have taken on the financial responsibility of everything (renting a hospital bed, commode, diapers, bed pads, special creams, the increase in our hydro bill for her oxygen machine, etc.). Her money is going into an apartment that she can never get back to living in. 

You have said we die as we lived. Well, my mother is a very stubborn person and it is magnified ten fold now. I am just not sure if between her denial and stubbornness we can manage her care from home. I love her very much and want to take care of her in her final days but don't want our frustrations to ruin the wonderful relationship we have always had. 

I just have to end on a good note as I don't want you to think this situation is all bad and stressful. Caring for my mother has brought us even closer. We have lots of talks, we laugh, and we cry. I know that when her time comes that we did everything we could for her to make her final months/weeks/days as good as possible and surrounded by the love of her family.
 
I appreciate how much you love your mother. I see the challenge you are dealing with in her attitude and behavior. As much as we love someone our feelings can turn to frustration and even anger as our efforts to care for them are sabotaged. I am glad to see you have nurses to assist you. You mentioned Hospice. Is it a Medicare certified hospice? Because if it is they should be paying for the hospital bed, her oxygen, and any medications that are related to her life threatening illness. Hospice also has a Social Worker that would be a good source of support for you. Talk to her about the challenges of caring, and your mother’s denial.

It appears her denial is interfering with her safety as well as her being able to appreciate each day. I think you have to be honest and direct with her, even if she won't appreciate hearing what you have to say. "I know you want to go for a walk with your walker but your body can't support its weight anymore. Shall we try to get you to sit in the chair instead?" You can gently remind her she has a life threatening illness, as you said in this email "this is as good as it gets.” You don't have  to dwell on her illness and weakness but don't agree with her in her denial. "No, Mom, you won't be going back to your apartment. I'm sorry but the disease isn't going to let that happen." "This is how things are now, Mom. Let's do the best we can." You can be positive and truthful at the same time. You will have to be the firm, stable one.

You can be firm yet loving. When she is angry and lashes out at you, tell her that that is not okay, you understand her frustration, but don't direct it at you. You must take care of yourself or you will not be able to continue to care for her. 

About the pain medication, the most common fear people have is of becoming addicted. What about having the nurse explain to her why she isn't going to become addicted? If she is not having pain related to her illness what is the pain medicine for? Why is she taking it? Does it need to be given routinely, on a scheduled basis, rather than on an ask for basis? It could become just one more of her pills that she takes without an issue being made of what it is.

As hard as it will be to not only read, but follow through with the advice in this coming paragraph, know that I give it with gentleness and concern in my heart. We can set limits and still be gentle, understanding and loving.

I reread your email, and it sounds as if Mom is running the show (from her unrealistic perspective) and it is time for you and your husband to stand up to her and take charge. You can't continue to let your lives be dictated by someone who is not looking at how others lives are being affected by their behavior. Just because she will die someday doesn't mean she can have everything the way she wants. We often see our elderly and sick acting like little children with their demands and we become like adults giving in to a badly behaved child. If you and your husband don't begin setting some limits, I agree you will reach a point where it is just too much to care for her in your home.

Something more on Caring for Mom at Home...

I would encourage those caring for a loved one in thier final act of living to sit down with the whole family and watch, NEW RULES for End of Life Care. It helps the dying and the watchers understand what is happening in the months to days to hours to minutes before death. In a non-threatening way, the film will allay fears about pain medications, narcotics and addiction, and dehydration. 

As Death Draws Closer
by Barbara Karnes, R.N. | April 25, 2016

Dear Barbara: I just listened to your interview on the Art of Manliness. As I go through life I find it useful to ask others what they have learned in any particular activity or endeavor.  With the many contacts you have had with those finishing their time here, I wonder what lessons they may have shared with you? What would they have done differently, what would they tell us?

Actually I am writing a book about those various lessons I have learned from the people I have worked with over the years. So those lessons are in my mind right now.

Here are some thoughts:  Most people, I am sorry to say, are so caught up in the process of getting treatment (and generally get very sick in that process) that  they don’t feel well enough to have deep thoughts. They certainly don’t want to “jinx” their treatment by thinking about dying and eventual death. I’ve learned we spend so much time trying to stay alive that we stop enjoying the life we have. I see that as a great sadness that a person may not even know they are experiencing.

Families have their fears and concerns. They are more realistic on some level but generally play the game of “this is going to work” and miss their opportunity to do and say those things that are important.

If you asked a person on the day they were dying what they would have done differently I think  they would tell you, if they could (and they can’t, it’s not like in the movies), that there should have been less treatment for this life threatening illness. They would say they would have done something they always wanted to do and didn’t instead. I don’t think they would have added another week or even a month to the life they were living with all its debilitation and side effects. Dying seems to come as a surprise. “I did all the treatment, suffered the side effects, gave up my activities, did everything the doctors said and I’m dying? How can that be? I wish I had eaten the dessert that no one said I should have.”

The dying process is such that it is in the months before death  that a person is alert and thinking about the might have beens. As death draws closer into the weeks before death the withdrawal process has become almost complete. All thoughts are held within. I believe there is a lot of processing of one’s life occurring, but on the inside. “What have I done? Who have I touched?” Thoughts and considerations.  Each person will have thoughts that apply to their individual life but the key word here is individual. We will look back on our own life's direction, accomplishments, and regrets. It seems to be more of an internal processing, an assessment. These are seldom shared.

As I reread this maybe no one is thinking any of these thoughts as they approach death. Maybe the above is what I have perceived and what I would think if it was happening to me. Maybe the most we can know and learn from another’s life choices is not what they say or don’t say but from what registers within us. Something to think about.

Something more about Death Draws Closer...

I wrote A Time To Live when my mother and step father were diagnosed with stage 4 lung cancer within months of each other.  A Time To Live is for the person who is faced with a chronic or life threatening diagnosis.  It offers suggestions on food, sleep, how to deal with affects of medications... and ideas of how to use this "gift of time" that they have in front of them.  

 

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Blessings!