How does a person feel as a hospice patient?  Everyone is waiting on them, they are unable to do things for themselves. They have to wear diapers and probably don’t want to be a problem for caregivers. Often, their well-meaning loved ones stay for long visits when they want to rest.

I don’t think there is a “one size fits all” answer here. I can only guess, not having been in that situation yet. What stands out for me is that whether we are facing the end of our life or have a serious illness or some sort of debilitation, how we react and respond is going to be according to our personality. It is going to be how we have faced other challenges and life situations.

Challenging life situations generally don’t change how we react or respond to others. Our personality traits are mostly just intensified.

So — if I am a very private person, I will probably have a challenge accepting all of the attention. If I’m an extrovert, then interacting with others can be helpful. You see where I am going with this. Look at the person, their personality, how they would react if they were well and that is probably what they are thinking and how they would want to be treated now. But even more so.

The one way of addressing these questions in the months before death is to ask, How do you feel about all this company? Do you want to talk about all the changes that are occurring? 

Click here to read full story: https://bkbooks.com/blogs/something-to-think-about/slipping-into-the-shoes-of-a-hospice-patient

It is a challenging part of life, both emotionally and physically, to figure out how to live productively when this person is no longer with us…

We think of grief as mourning, of our emotional reaction to a loss. The tears, the “I miss her so much,” the sadness she is no longer with you. Grief is sadness. For some, it may be a relief that someone or something is no longer a part of our life.  We don’t just grieve for those we care about. We grieve for people we are challenged by also.

Another component when experiencing the death of someone close to us is learning how to live without that person. The component that extends beyond the emotional and into the physical, day to day life experiences. The adjusting to a new way of living, of figuring out how to be productive with this person no longer in our life.

For husband and wife, partners, or any other people living together like a parents and child or friends, our entire daily routine changes. Adjustments have to be made. Habits changed. How do I cook for just one? What do I do with all this time that I used to fill with caregiving? The “you mean I really get to watch the show I want?”

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/adjusting-after-our-person-has-died

Thanksgiving! A day of gratitude for a year of blessings. For many it is a challenge to find blessings in this chaotic world. For those living with a life-threatening illness, caring for someone faced with end of life issues, or experiencing their first year or even years of grief, it can be hard to find anything to be thankful for.

That’s how I feel today. I’m tired. I’m concerned about the world. I’m sad some of my family won’t be with me this Thanksgiving holiday. I miss my husband Jack.

He was my go-to person for helping me understand the world. He was my guidance when life seemed precarious; a strong, reassuring presence to my uncertainty.

As I am writing this, the thought, “what does this have to do with Thanksgiving?” popped into my head. It made me think for a moment.

My thoughts: I am grateful and thankful for the years I had with him. For the reassurance, the sense of security he brought into my life and our family’s life. I am thankful for the children we raised together, for the love of animals and travel we shared, for the sense of stability our partnership provided. I was not alone. We had each other.

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/acknowledging-my-grief-and-gratitude

As death approaches, taking a blood pressure is one more unnecessary intrusion for the patient and for the family. Will what you learn affect anything?

A hospice nurse asked if we, the medical caregivers, should be taking scheduled or frequent blood pressures when caring for someone whose end of life is approaching. That question made me think about how tuned into medical procedures we healthcare workers are. Blood pressures, lab work, pulse, respirations, and temperature — all routinely taken and recorded. 

My answer is NO we do not need to take a blood pressure (or any of the other routine medical procedures) every visit, and particularly when the active, imminent dying process has begun. 

What are we going to do with that knowledge? What can we do? What will it tell us that we don’t already know? This person is actively dying. Other more important signs tell us that death is approaching: congestion, changes in breathing, awareness level, a weak pulse, or mottling – a discoloration of hands and feet. Those signs tell us what we need to know about the patient’s condition. Who needs the blood pressure?

As death approaches, taking a blood pressure is one more unnecessary intrusion for the patient and for the family. Will what you learn affect anything? Are you going to do anything about it? 

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/stop-chasing-vitals-start-comforting

Guilt is part of love’s shadow — the echo of what we wish we’d done differently. Healing begins when we release that burden and let how we live now be the gift we give to the one we miss.

Oh guilt! We carry so much in our minds and our hearts. Feeling guilty seems to be a natural part of living. BUT how much is worthy of all the energy we give it? How much is built on prior thoughts and conditioning? Even though guilt is unproductive, we humans experience and carry way too much of it with us.

We could let our feelings of guilt help us live better. We could recognize it for the reminder of the past that it is. We could make amends, say I’m sorry, try not to do the thing that is causing us to feel guilty again. We could let go of the past and move forward with its lessons learned. 

As end of life approaches, we the caregivers, relatives, and significant others often carry an immense burden of guilt as we watch our special person approach death. Thoughts of “I wish I had,” “I should have,” “what if?” and  “why didn’t I?” often fill our minds.

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/guilt-and-grief-what-we-carry-and-how-to-set-it-down

There is no perfect relationship. There are good times and difficult times. Sometimes the difficulty we have with the person that is dying keeps us from being at the bedside. We are uncomfortable, angry, hurt, and often unforgiving. We find it easier to avoid, rather than confront, whatever has come between us, so we stay away. Then, when death comes, the guilt we carry because of those unresolved issues compounds our grief.

Dear Barbara, there’s a phenomenon I see every so often when I’m doing hospice care. A close family member, a spouse, parent, or child, will totally back away from the dying process, sometimes to the extreme of not being with the patient at all. Then, when it’s all over, they totally fall apart. The situation becomes all about their grief and loss. How would you deal with this?

There are so many reasons for this kind of behavior and each individual situation requires a different approach. I think fear keeps some family and significant others from being with their person as the end of life approaches. They are afraid of what dying and death will look like so they stay away. Here we can help by teaching about the dying process, offering support and guidance. Our function with most of our families is to neutralize the fear around dying and death that they bring to the bedside. Yet sometimes no matter how supportive and instructive we are, we do not reach the individual.

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/distancing-from-the-dying

When the doctor says, “We are having a difficult time fixing you;” “I can’t fix you, let’s talk about comfort care;” “We have tried everything and the treatments are not working to eliminate the disease progression;” “I can not give you the quality of living that we were hoping for with the treatments at our disposal;” or “Let’s talk about how you can best live your life from this point forward,” — This is the time to consider end of life comfort care.

These are the words I wish physicians had the courage to say to their patients who are facing life threatening conditions. To qualify, some physicians do address these issues with their patients in a timely manner but, honestly, many do not. 

Remember, the medical model treats diseases that people have, not necessarily people that have disease. In today’s medical model disease is to be “fought” at all costs. Often the motivation for treatment is that what we learn from one patient’s experience, disease progression, success or failure, will help us learn how to treat others more successfully.

Unfortunately, this medical approach does not take into consideration that the body is programmed to die. Everybody dies and one of the ways it dies is because of disease.

Taking the above into consideration, it is really up to us, the patient and family, to look for the success or decline in the treatment options and progression. I am suggesting we consider all options with a clear vision of how we can live life in its best possible way, to look at life as being more than just the body breathing.

What can we look for that tells us when it is time to consider comfort care and not aggressive treatment options? Comfort care being palliative care, hospice care, and/or End of Life Doula support.

1. In spite of treatment the disease continues to progress, invade, cause pain and bodily symptoms. This appears so obvious yet in our desperation to stay alive, we often ignore the very message our body is trying to tell us.

Click here for the full story: https://bkbooks.com/blogs/something-to-think-about/when-is-it-time-to-choose-comfort-care

The experience of dying a gradual death is an important, integral part of life. It is an opportunity to write our final chapter, to define the ending of our story…

All the space between birth and death is living. YET we tend to conceptually segregate our final experience off from all that has preceded it.

The experience of dying a gradual death is an important, integral part of life. It is an opportunity to write our final chapter, to define the ending of our story. 

How we face our impending death can result in our finest work. Or we may be so frightened in the face of this terrifying challenge that we can’t quite get ourselves to rise to the occasion. The part of our life that is associated with dying, that final challenge, will be met in the same way we have dealt with any other challenge in our life. A doer will get things done and address issues straight on. A procrastinator not so much. A talker will probably become more chatty, an introvert will probably be even quieter. Our personality doesn’t change; it intensifies.

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/writing-our-final-chapter-more-meaningfully

Now I have to learn how to be a widow. How to create a new life, a new way of being. I am truly alone. 

As a new widow (that word sounds strange and startling) I have had many new insights. In my work in end of life, the focus has been on approaching death. Grief has been an afterthought, not a primary issue. With Jack’s death, I know how powerful grief is.

Emotionally, now a month after Jack’s death, I am still kind of numb. I haven’t cried since his death. The tears are generally behind my eyes. I can feel them but can’t or won’t let them out.

I am not my gentle, understanding self. I am impatient. I am not necessarily being sociable or even being polite. I am sharp and edgy. That is not who I consider myself to be.

Little things I never thought of before have come to light. Who do you talk to when you get up in the morning? Baxter, my cat, gets my words. Who do you eat with, sit at the table with, watch TV with? No one other than Baxter.

How do you go to bed at night? Close the door to the bedroom? Lock the bedroom door? Leave a light on? For 65 years, Jack has been in my life. He was part of everything and I didn’t even realize it. 

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/the-part-of-grief-you-dont-know-until-you-do

Clear communication is one of the most powerful tools in healthcare. Healing begins when we sit close, speak simply, and remember that care is about people, not just disease.

A friend went to an oncologist for a medical problem. Yes, there was a problem, the doctor said – and then proceeded to explain in complicated medical terminology. Words and explanations that were totally out of my friend’s (and most people’s) knowledge and comprehension.

A personal and all-too-common example comes from the time my mother and I were at her oncology appointment. She was sitting on the end of the exam table in a skinny, open-backed gown. The doctor was explaining her disease progress and prognosis. All the while he was talking, she was nodding her head up and down as you would if you understood and agreed. I didn’t understand what he was talking about despite my medical knowledge, so I knew she didn’t. Also, he was standing several feet away from her, arms folded. I’m sorry to say this is not an isolated occurrence.

People don’t want complicated medical explanations from their doctors or medical people. They want simple, everyday words. They want guidance, reassurance and support as well as information. They want truth and options in a format they can understand. I had a friend say, “I have a PHD, but that doesn’t mean I understand the language of medicine.”

Did you notice in my explanation above that the doctor was standing and actually a good distance away as he talked? When talking to really be heard, sit close enough to touch and at or below eye level. You are setting the stage to be heard — really heard and understood. 

Click here to read full story: https://bkbooks.com/blogs/something-to-think-about/beyond-the-diagnosis-the-power-of-plain-words

My hope in writing this blog is to draw our attention to the “unsung heroes” caring for their special person as end of life approaches, as well as to those caring for family and significant others who are not dying but in need of care.

Taking care of someone as they approach the end of their life is hard, scary, frustrating, sad, and often guilt-ridden work. Caregivers carry the burden of care but are often invisible.

We tend to give our attention to the patient by focusing on their wants, needs and changes. We come, often bringing gifts and food, and we sit with the patient. We talk, tell stories, try to laugh, then we say goodbye and leave. 

Meanwhile, the caregiver is behind the scenes doing all the work, receiving no attention, receiving no acknowledgment.

My hope in writing this blog is to draw our attention to the “unsung heroes” caring for their special person as end of life approaches, as well as to those caring for family and significant others who are not dying but in need of care. These people do the physical work while carrying the emotional burden of caring for someone they know and have a relationship (positive or negative) with.

Caregiving is 24/7 work. The nights are usually the hardest. The dark, quiet, alone time is when it seems the “goblins” of fear, exhaustion, and general tiredness come out. 

Click here to read the full story: https://bkbooks.com/blogs/something-to-think-about/caregivers-carry-the-burden

How to let go and stop feeling guilty? At first you probably aren’t even aware of your feelings. When someone close to us dies, even if we are told it is going to happen, we are in shock, numb. As the numbness wears off  we start feeling guilty…

Barbara, After death, especially of a loved one, how do you let go and stop feeling guilty when you have no reason to feel guilty.

Guilt seems to come with loss. We burden ourselves with questions we can never answer, with “What if ” and “Why didn’t I”. We repeatedly berate our selves with “I should have” thoughts. Every time we ask ourselves one of these questions more guilt is piled upon more guilt until we are buried (pardon the use of the word) with remorse.

You are right, most of the time there is no reason to feel this guilt, although sometimes there is. Either way it is unproductive. It only complicates the normal grieving process.

How to let go and stop feeling guilty? At first you probably aren’t even aware of your feelings. When someone close to us dies, even if we are told it is going to happen, we are in shock, numb. As the numbness wears off we start feeling guilty. That’s when the “what if’s” set in.

Click here to read full story: https://bkbooks.com/blogs/something-to-think-about/the-heavy-feelings-of-loss

I knew all the signs of approaching death, of labor beginning. What I didn’t know was how much we don’t want to see those signs, and by not wanting to see them, we often don’t.

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 engagement. AND experiencing the frustration those actions were building.

It took a day of anger to recognize I was concentrating on keeping him alive while he was preparing to die. It took anger to begin accepting what was happening. Actually, “accepting” is not the right word, because it will never be okay. Let’s use the word “understanding.” It took anger to understand what the future was bringing.

Click here to read full story: https://bkbooks.com/blogs/something-to-think-about/do-you-see-that-he-is-dying