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Recently I have been hearing discussion of why families and significant others do not want hospice or EOL Doulas with them during the final moments of life. Families often do not want anyone with them…

Recently I have been…

Recently I have been hearing discussion of why families and significant others do not want hospice or EOL Doulas with them during the final moments of life. Families often do not want anyone with them as their special person is actively dying. That is alone, private time. Anyone else present is an intrusion, an invasion of privacy. My two cents: Yes, some may think it is a very private moment and do not want to share it with "strangers." HOWEVER, most people don’t understand how death happens. They don’t understand how people die. Movies tend to be today’s role model and that is not how …

Barbara, Can you write about "miracles" and how the hope/prayer for a miracle can make people miss what is in front of them? An internet search defines a miracle as: “a surprising and welcome event…

Barbara, Can you wr…

Barbara, Can you write about "miracles" and how the hope/prayer for a miracle can make people miss what is in front of them? An internet search defines a miracle as: “a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.” I, Barbara, define “a miracle” as "an event attributed to a supernatural being (God or gods), a miracle worker, a saint, or a religious leader.” It is an event that seems to defy all logic. With that definition, you have to be a pretty high stakes gambler to bet your life (…

We go through labor to enter this world AND we go through labor to leave it. Most of us don’t know this. When we see our special person struggling, we, the watchers, think something pathological is …

We go through labor …

We go through labor to enter this world AND we go through labor to leave it. Most of us don’t know this. When we see our special person struggling, we, the watchers, think something pathological is happening or we think the professionals are not doing enough to provide proper care. In reality, nothing bad is happening. It is sad — but not bad. This is how we leave our body, how we leave this world. Dying is not pretty. It is often messy, loud, and very scary for us watchers. Because we only have tv and the movies as our guide on how people die, we are not prepared for its ugliness. Add our…

Those of you who know and follow me have heard or seen me use the phrase, “People don’t die like they do in the movies.” I think one of the biggest fears we bring to the bedside of someone who i…

Those of you who kno…

Those of you who know and follow me have heard or seen me use the phrase, “People don’t die like they do in the movies.” I think one of the biggest fears we bring to the bedside of someone who is in the dying process is expecting our special person to say something profound or at least "goodbye and I love you." We want them to close their eyes, turn their head a bit to the side and stop breathing. They are now dead, just like in the movies. Those images are what we expect, but are unfortunately not how death occurs. We used to have role models on what dying really looks like. People 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…

Thanksgiving! A day …

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 seeme…

When I first became aware of the hospice concept it was the 1970’s. It was an abstract idea that most people couldn’t pronounce, let alone did they know what it wanted to accomplish. Dr. Elizabeth…

When I first became …

When I first became aware of the hospice concept it was the 1970’s. It was an abstract idea that most people couldn’t pronounce, let alone did they know what it wanted to accomplish. Dr. Elizabeth Kuebler Ross and Dame Cicely Saunders both began saying the "D word" and ever so slowly, minds began to awaken to the fact that everyone dies, that dying can be talked about, and that comfort can be given. Hospice began as an ideal, a step outside of the medical model. It was generally operated by volunteers and it was financed and maintained by community fundraising and donations. What is the sa…

Dear Barbara, I have a question for you: When one of our residents dies, how should we handle telling other residents? This is what happened this past week: Resident A and B were very close. They alwa…

Dear Barbara, I have…

Dear Barbara, I have a question for you: When one of our residents dies, how should we handle telling other residents? This is what happened this past week: Resident A and B were very close. They always held hands, liked to sit together and watch the bird cage. They were very good friends. They were on our Alzheimer's/ Dementia unit. Resident A had a Stroke and was confined to her bed and within two days, she died. Resident B seemed lonely and looking for her friend. According to HIPPA regulations, we are not to tell others on the unit about the person who has passed away. Another staff person…

Dear Barbara, I'm interested in learning more about a career as an end of life doula. I understand there are courses, programs, and even certification. Do you know of one that you would recommend?  I…

Dear Barbara, I'm in…

Dear Barbara, I'm interested in learning more about a career as an end of life doula. I understand there are courses, programs, and even certification. Do you know of one that you would recommend?  I have done webinars and podcasts with several end of life doula groups but am not comfortable in recommending a specific one. There are many different approaches and offerings. These multiple choices give you the chance to match your personality with the instructors and teaching methodology. Do an internet search, and be sure to check all the websites and their course offerings. Look into where th…

Dear Barbara, 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 proble…

Dear Barbara, How d…

Dear Barbara, 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 …

Dear Barbara, as a hospice admission representative, what do I say to families who say they are “not ready” for hospice — even when they clearly are? There is an old saying "you can lead a horse…

Dear Barbara, as a h…

Dear Barbara, as a hospice admission representative, what do I say to families who say they are “not ready” for hospice — even when they clearly are? There is an old saying "you can lead a horse to water but you can't make him drink." I think that applies here. Our job is to explain hospice benefits and requirements, to explain that dying has a process, and that hospice can help during this challenging time.  Part of "selling" hospice is to create trust and a bond during that first meeting. It takes people skills in addition to knowledge of hospice benefits.   Bottom line is: provide …

Pets: dogs, cats, birds, horses, goats, hamsters, snakes, lizards, fish. I could go on and probably not cover all of the creatures that make it into our hearts and lives. For these we will grieve. Our…

Pets: dogs, cats, bi…

Pets: dogs, cats, birds, horses, goats, hamsters, snakes, lizards, fish. I could go on and probably not cover all of the creatures that make it into our hearts and lives. For these we will grieve. Our grief will match the intensity of our connection to the animal. (I’m going to use the word animal but I am referring to all the creatures that enter our lives and take up residence in our hearts.) For some of us, our pets are our children. For some, they are our working companions. And for others, they are service animals or emotional support. Our grief for those that get into our lives and hea…

Someone asked me about deathbed rituals. They wanted to know what to say and do when someone is in the moments before death and what to do before the funeral home arrives. Here are my suggestions: In …

Someone asked me abo…

Someone asked me about deathbed rituals. They wanted to know what to say and do when someone is in the moments before death and what to do before the funeral home arrives. Here are my suggestions: In the hours to minutes before death, gather family and significant others. Encourage each person to spend some time alone with the person dying. This is the time to talk from the heart, to talk about the good and the challenging times, to speak of love and forgiveness. This is a private time.  The person dying will be non responsive, breathing erratically, probably with their eyes partially open. I…

Dear Barbara, I am a hospice nurse advocate and working on an Education piece for hospice leadership. What is the average length of time you feel is appropriate for a comprehensive/quality Nursing vis…

Dear Barbara, I am a…

Dear Barbara, I am a hospice nurse advocate and working on an education piece for hospice leadership. What is the average length of time you feel is appropriate for a comprehensive/quality nursing visit that includes education and psychosocial support? This is such an important question, particularly today after all of the changes that have taken place in hospice over the years. Before I address time let me plant an idea: today, most hospices have an assessment nurse, an admitting nurse, and then a primary care nurse. This is WAY TOO MANY people for families to understand and bond with. Famili…

Dear Barbara, I have a patient talking to me about all the mistakes he’s made in his life. Regrets for doing things that he isn’t proud of. He was noticing that very few people had visited him. Wh…

Dear Barbara, I have…

Dear Barbara, I have a patient talking to me about all the mistakes he’s made in his life. Regrets for doing things that he isn’t proud of. He was noticing that very few people had visited him. What should I say? As end of life approaches, people start looking at their life; what they’ve accomplished, not done, who they have touched, interacted with, and the Relationships they have or have not built. Added to this reminiscing are the judgements they put on themselves about what they are remembering. Also add that as they assess their life, as most do as death approaches, they will assess…

I’m writing a book about the experiences I’ve had in working with end of life. What keeps appearing throughout the chapters is “over a cup of coffee” or “sitting at the kitchen table.”  A…

I’m writing a book…

I’m writing a book about the experiences I’ve had in working with end of life. What keeps appearing throughout the chapters is “over a cup of coffee” or “sitting at the kitchen table.”  A lot of time spent talking, becoming acquainted, and listening to life and relationship stories. We talk about living and their life, rather than about the disease or their symptoms. It got me thinking about how different end of life work is compared to regular medicine. All the hours of talking, drinking coffee, and eating homemade pies was time spent healing, building trust, and educating. It wa…

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 giv…

Taking care of someo…

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 “…

Dear Barbara, I need some advice. I am doing a patient evaluation and have been told not to use the word "hospice" with the patient. The primary care person doesn’t want the patient to know the ser…

Dear Barbara, I need…

Dear Barbara, I need some advice. I am doing a patient evaluation and have been told not to use the word "hospice" with the patient. The primary care person doesn’t want the patient to know the seriousness of their illness. I hear this way too often. I suppose the primary care person is trying to protect their special person. I believe everyone has the right to be told once that they can’t be fixed. It is the physician’s job to compassionately and honestly give that information. Then, if it is the person’s choice not to talk about it, so be it. BUT when family members try to protect t…

I had someone ask me "Why do all people with dementia feel someone is out to get them?" My answer—not all people with dementia feel or react like someone is out to get them. There is no one size fit…

I had someone ask me…

I had someone ask me "Why do all people with dementia feel someone is out to get them?" My answer—not all people with dementia feel or react like someone is out to get them. There is no one size fits all when it comes to dementia. Just like all human beings are different, so is each expression of dementia different. Dementia is not a disease in itself. It is a symptom and that symptom originates in many different diseases.  Most diseases other than dementia follow consistent patterns and have particular treatment courses — a "take two and your headache will probably go away" kind of proto…