As most of you know my husband died September 18. It was my turn to walk on the other side of hospice. He was diagnosed in May with cancer of the lung. At 89, we decided treatment would hinder his quality of living. At 89, any disruption of our “normal” can turn into a downward spiral. We wanted him to live his best life while he could. It is interesting to me that with all my knowledge, I fell into the trap most people find themselves in: not wanting to see what is really happening. Intellectually I knew the signs and patterns of approaching death, but emotionally I kept pushing food and seeking... Continue Reading
Posts Tagged With ‘ Barbara Karnes ’
I often do some of my best thinking during those hours at night when I am awake. Recently, as I tried to go back to sleep at 3:30 AM, I started thinking about comfort care and morphine use during the end of life process. Picture this: there is breathing distress while the hospice nurse is present. She advises a “bit of morphine.” Many times I have done that very thing. Often, the family’s first reaction is “No, I don’t want to start morphine.” To them morphine is the “last resort.” It is scary and they don’t want to be at the stage where morphine administration... Continue Reading
When it comes to looking at how long someone diagnosed with a life-threatening illness has to live, we tend to give people more time than they actually have.Doctors do it, family does it. It is the hospice nurse or end of life doula’s job to be the realist, to guide all present. Families give more time by seeing through the lens of their emotions, their fears, and their lack of role models. People don’t have accurate role models on what dying looks like anymore, other than movies, and people don’t die like that. It is the end of life team (hospice or EOL doulas) that must be clear, observant,... Continue Reading
I talk a lot about eating and not eating as a person approaches the end of their life. I remind people that our body eats to live and that when the body is preparing to die, all by itself, it cuts back and stops eating. The person reaches a place where they just can’t eat no matter how much they or others want them to. My advice is always offer food but don’t force. In this blog I am going to address the caregiver of the person that doesn’t want to or can’t eat. As caregivers, we want so much to do the “right thing” for our special person. We know death is coming but still try to... Continue Reading
Dear Barbara, my mother has progressive cancer. She has refused hospice because she wants to go to the emergency room if she needs to. We’ve had hospice for two other family members and they were wonderful. I am so disappointed she won’t accept their help. I need their help. She lives alone. I live several hours away from her. Currently I am driving those hours (each way) 2 to 3 times a week. Her condition is deteriorating. She has strongly told me she does not want to go to a nursing home or be “put in the hospital” yet she will not sign an advanced directive. As hard as it will be, I... Continue Reading
When dying a gradual death, there are a variety of dynamics and patterns, as well as the individual’s personality that makes each death unique. Yet as unique as each death is, there are also commonalities. In the months before death from disease, and often years before death from old age, parts of our personality begin to change while other aspects of who we are do not. When we begin the gradual dying process our personality tends to intensify. If we are an angry person we will get angrier. If we have a gentle personality we will become even softer. Other than the intensification of who... Continue Reading
Pain at end of life is so misunderstood. It seems like the letters I receive from family members saying “Hospice gave my mom morphine and they killed her” are increasing instead of decreasing. SO here are my thoughts on how to help our families: education, education, education. Before beginning use of morphine or fentanyl sit down with primary caregivers and begin their education. I wrote the booklet Pain At End of Life to address the misunderstandings and fear that surrounds narcotics at the end of life. Pain management for someone at the end of life is different from pain management for... Continue Reading
When doctors and healthcare professionals place a number on how long someone has to live, they are doing that person a disservice. We have the right to be told about our disease, its progression, and the options of care and their expected outcomes. We need to know what the probability of our being cured is vs. the disease just controlled. If controlled, what does that mean? What kind of quality (physical and mental activity) will we have? We also have the right to be told if we can’t be fixed, if our disease has progressed to the point it is not fixable. This knowledge gives us the opportunity... Continue Reading
I was thinking about birth and death at three o’clock this morning. I know most people are asleep at that hour—hopefully. I was thinking how similar they are and that they create a circle. A circle of life. We go through labor to get into this world. It can be easy and gentle or it can be a hard, wild ride. So it is with our labor to leave this world. Some of us go easier than others. For some it is gentle, for others it is very, very hard. After we get to this world we take deep breaths and settle in to get adjusted. As we leave, our breathing gets slower and slower. We are relinquishing... Continue Reading
“I’m so angry! I’m angry that he is sick. I am angry that I’m angry that he is sick.” “I feel guilty that I’m angry. I’d better not tell anyone how angry I feel. They’ll see what a ‘bad’ person I am. I won’t tell anyone——I’m so depressed.” Anger held inward becomes depression. The above are thoughts from a caregiver’s inner being. Thoughts probably never shared, just kept inside. AND driving its owner deeper into depression. The role of caregiver for someone we care about, or even someone we don’t care about, has many challenges. The challenge... Continue Reading