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Dear Barbara, My mom is 83 and has moderate Alzheimer’s . Since May, I have noticed a big change in her behavior. She has really slowed down with everything. She sleeps a lot. I know she is depresse…

Dear Barbara, My mom…

Dear Barbara, My mom is 83 and has moderate Alzheimer’s . Since May, I have noticed a big change in her behavior. She has really slowed down with everything. She sleeps a lot. I know she is depressed and she is on medications, but I hate to see her sleeping like this. She is still asleep now and she went to bed last night at 8:30. Should I be making her get up earlier? I’m no expert on dementia related diseases. Teepa Snow and MaryAnn Oglesby are my go-to people for information and advice on "what I should do now." What I'm saying is that I, Barbara, am no dementia specialist. It is hard t…

Dear Barbara, My mother was transferred to an inpatient hospice. She was alert and talking to us when she arrived. Upon admission, the RN brought up the topic of medications to help her relax. I told …

Dear Barbara, My mot…

Dear Barbara, My mother was transferred to an inpatient hospice. She was alert and talking to us when she arrived. Upon admission, the RN brought up the topic of medications to help her relax. I told her my mom had been relaxed without any problems. The RN insisted she seemed uncomfortable and pushed for morphine. Within 30 minutes of getting the morphine, mom started having difficulty breathing. It seemed like the morphine over-relaxed her. We didn’t even ask about pain medication; the RN brought it up and suggested it. I regret not having the courage to tell her no! Tell me, did the morphi…

A life review helps us as our life is ending. It can put all the happenings of our life in perspective. How about an end of the year review? Let's take some time to remember and think through our stru…

A life review helps …

A life review helps us as our life is ending. It can put all the happenings of our life in perspective. How about an end of the year review? Let's take some time to remember and think through our struggles, our misadventures, and assess our strengths. From the knowledge and perspective found in our review of 2024, let's allow 2025 to be a fresh start, a new beginning to living the life we want to create. Something more… I write about the life review that is so common at end of life in my book, The Final Act of Living: Reflections of a Longtime Hospice Nurse.

For those of us who are grieving, the holidays can be challenging. Yearning memories, I-wish-I-had's, and loneliness can all be more strongly felt. Other people seem cheerful, happily planning holiday…

For those of us who …

For those of us who are grieving, the holidays can be challenging. Yearning memories, I-wish-I-had's, and loneliness can all be more strongly felt. Other people seem cheerful, happily planning holiday delights, and we, the grievers or caregivers, are reminded of what we don’t have, of what we’ve lost or are losing. What to do? Write your special person a letter. Put your feelings, your sadness and your thoughts on paper. Burn the letter and scatter the ashes to the wind. Let your grace in moving through these holidays be the gift of love you give to your person. Joy is where we make it. Jo…

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…