Dear Barbara, I lost my Mom in 2018 and I have regrets we were not at her side when she passed. She suffered from Cx for five years. After it moved to her brain, she slowly deteriorated over the next eighteen months until she passed. It started out with her forgetting a recipe she had made for years, to falling several times a week. The last fall almost killed her and she never came home – she went to rehab and then a nursing home. Once she fell, hit her head and got a nasty cut on her forehead, and another time in the garage. I don’t know why I am justifying our decision to move her to a nursing home, actually I do… I have a lot of guilt over it. She would not have wanted that, but we did not have another choice. This brings me to the tear. My Mom was in Hospice and we were well educated on the signs to watch for in the end. First she stopped eating and drinking, then she slept all day with her eyes half open. A few days before she passed the Hospice nurse was there with us and she was sharing how she was going through the process of leaving her body and how difficult it is for the body to go through that process. Right after she left I was on her bed holding her hands and she sat up a little, eyes wide open staring right at me and she tried to talk but all that came out was the sound a deaf person makes when they try and speak. I always think about that – what was she trying to say? was she scared? My dad was at her side every day, and I came by after work and would sit with her and hold her hand and tell her she could go and not to worry because I would take care of Dad. The day before she passed, we left her room around 7PM and told her we would be back in the morning. I got a call around 6:45AM the next morning from the nurse who said, “your mother has expired.” Yes, she used those words. When my dad and I got there, her body was still warm. I hugged her and she was so rigid. I could not believe how warm she was – I guess I expected her to feel cool to the touch. I had to leave the room. We sat out in the living area outside her room and the nurse came over and said, “It was the oddest thing. When I checked on your mom this morning and realized she had expired, there was this one lone tear on her check.” Like everyone else, I have thought about the tear daily. Was it joy for meeting her savior? Was she seeing her parents and others who passed before her? Was she sad? Did she know she was alone? I have so much guilt for not being there. One of us would usually get there around 8AM. No one could explain the tear, no one had ever heard of it. My best friend who is an MD had never heard of it. I don’t think my guilt will ever subside.
Although long, I’ve left this letter mainly intact for several reasons. One is because it shows so many of the challenges families are faced with when a loved one has dementia. The guilt, frustration, uncertainty, and helplessness of family caregivers is as much a problem to our healthcare system as the patient with dementia. Second, is that it displays the lack of knowledge of health care professionals about end of life, as well as how that ignorance has a lasting affect on families.
Let’s start with: “It was the oddest thing------- there was one lone tear” said by a nurse in the nursing home. That simple remark and remarks like that one, which was maybe thought to be comforting, can have a lasting impact on a family’s grief and memories of their loved one’s death. That comment was unnecessary on the part of the nurse. Nothing positive was accomplished by sharing that observation. It does show the lack of end of life knowledge not only of the nurse but the physician that said he had never heard of that happening.
The tear was probably not one of sadness and certainly not unusual. I have seen moisture from the eyes many, many times. When a person has their eyes partially open (which most people in their last days do), the body sends moisture - tears - to keep the eyes from drying out.
Another issue addressed in this letter is that the family was not with Mom when she died. We have limited control over the time that we die. If we are with someone at the moment of death we are there because they want us there. If they know our scheduling and die when we are not there they are protecting us. It is a gift of protection. Yes, we have that much control.
Important also in this letter are the feelings of guilt that mom was in a nursing home. With her wandering during the night, unless you have nighttime shift help who would simply watch her, there comes a time when there is no other option for keeping people with dementia safe but to put them in a nursing home. This situation is one that many families face and our healthcare system does not.
There are so many parts to this letter that people throughout this country experience and question. Mother sitting up in bed and making a loud sound while she was non responsive is just one of the many things people who are dying do that frightens us. It frighten us because we don’t have knowledge of how people die.
As people die they do a lot of strange things that we will never have answers to or reasons for. What I do know is during the dying days and hours the person’s thoughts and activities are not of this world. They can hear us but it as if from afar. We tend to think of people’s minds as being aware but just trapped inside a body. Not so. Their work is getting out of their body. Their minds are not tuned to the present or their environment.
Think of how our dreams are: symbolic, disjointed and with no time frames. That is the mind of a dying person. What comes out in the physical relates to what is going on inside of them, not outside. It doesn’t make sense to us watchers because we relate to what we see, not what the person who is dying sees in their “dream”.
I hope my thoughts have given you something to think about and brought some comfort. When we don’t know what is normal, what naturally happens as death approaches, we carry our misconceptions and the associated guilt inside us. Those thoughts complicate our grieving and in some cases we never mend.
Something More about.... "One Lone Tear", Dementia at End of Life
Watching a loved one in the dying process is full of intense emotions for families. An educated staff is key to a family's experience in hospice and in their grief journey. I encourage hospices to watch THIS IS HOW PEOPLE DIE each year for continued education and for every staff member to provide consistent education. How Do I Know You? is the booklet family members of those dying with dementia need.
17 comments
Pat Taylor
I am my husbands caretaker. It’s the hardest thing for me to watch this beautiful, handsome, loving, and hardworking man living with dementia. He is so miserable because he knows what’s going on and always tells me he is a worthless. Sometimes he gets so mad at me for trying to tell him that I will do it. I miss the Prince I married
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BK Books replied:
Pat, I am so sorry dementia has taken the prince you once knew. Remember to take care of yourself as you travel this challenging road. Blessings! Barbara
I am my husbands caretaker. It’s the hardest thing for me to watch this beautiful, handsome, loving, and hardworking man living with dementia. He is so miserable because he knows what’s going on and always tells me he is a worthless. Sometimes he gets so mad at me for trying to tell him that I will do it. I miss the Prince I married
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BK Books replied:
Pat, I am so sorry dementia has taken the prince you once knew. Remember to take care of yourself as you travel this challenging road. Blessings! Barbara
Ruth (Reed)
I wanted to quickly share my grandson’s message to me when my mom died. My daughter and her family lived out of state and thankfully had visited my mother just before she lost all memory of us. Even tho he was only 5, he remembered her and was very interested in all of the talk while we were traveling down our “dementia road”. After I call my daughter to let her know about my mother, she told the kids. My sweet grandson said “ please call Gramms and tell her that Grandma will only pass one time. She won’t have to worry anymore”. I thought about that so much. His insight was amazing to me. We had caring staff at the nursing home as well as our hospice team. Now I am a hospice RN and I love being able to encourage my clients and families to embrace the time they have. Thank you so much for sharing your wisdom.
I wanted to quickly share my grandson’s message to me when my mom died. My daughter and her family lived out of state and thankfully had visited my mother just before she lost all memory of us. Even tho he was only 5, he remembered her and was very interested in all of the talk while we were traveling down our “dementia road”. After I call my daughter to let her know about my mother, she told the kids. My sweet grandson said “ please call Gramms and tell her that Grandma will only pass one time. She won’t have to worry anymore”. I thought about that so much. His insight was amazing to me. We had caring staff at the nursing home as well as our hospice team. Now I am a hospice RN and I love being able to encourage my clients and families to embrace the time they have. Thank you so much for sharing your wisdom.
Judy Spencer
Hello Barbara. Thank you for your good work. I can’t tell you how valuable it has been and I refer to your booklets often when talking with Patients and their families. So many family members will feel they have to “stand watch” and be there when their loved one expires. They are often exhausted and barely able to cope. I tell them, "your Mom is the boss. She may decide to slip away when you are not in the room in order to protect you. This could be her way of taking care of you one last time. You know her better than I do. Is that something she would do? " Often, they will smile and say, “she always was the boss. That sounds just like her.” Every family is different, but this seems to help.
Hello Barbara. Thank you for your good work. I can’t tell you how valuable it has been and I refer to your booklets often when talking with Patients and their families. So many family members will feel they have to “stand watch” and be there when their loved one expires. They are often exhausted and barely able to cope. I tell them, "your Mom is the boss. She may decide to slip away when you are not in the room in order to protect you. This could be her way of taking care of you one last time. You know her better than I do. Is that something she would do? " Often, they will smile and say, “she always was the boss. That sounds just like her.” Every family is different, but this seems to help.
Megan
Sadly, in the hospital setting, the word “expired” is said out loud and typed into patient charts. I also felt shock the 1st time I heard it. A MD asked me, “What time did the patient expire?” So blessed to be a hospice nurse where patients are people and not room numbers or diagnoses. Peace to all.
Sadly, in the hospital setting, the word “expired” is said out loud and typed into patient charts. I also felt shock the 1st time I heard it. A MD asked me, “What time did the patient expire?” So blessed to be a hospice nurse where patients are people and not room numbers or diagnoses. Peace to all.
Barbara
Hi Carol, We have limited control over the time that we die. That means we can chose to have someone with us when we die or we can protect a person by dying when they are not there. You are right, that control can also be used to make it easier to leave those we love. Blessings! Barbara
Hi Carol, We have limited control over the time that we die. That means we can chose to have someone with us when we die or we can protect a person by dying when they are not there. You are right, that control can also be used to make it easier to leave those we love. Blessings! Barbara
Carol Alix
You and others say that the dying wait until we are out of the room to leave to help us from the pain. My best friend died in 2013 from cancer. She was in hospice for 35 days. It was a slow and gradual decline daily. Susan had said to me early on, to not have her husband stay at the hospice center when I knew it was time for her to leave. Let him go on home. Susan said ‘it will be harder for me to go if Larry is here.’ I remember her words and it makes sense. Perhaps the dying just can’t let go either and when loved ones are out of the room it allows the dying – - to depart in peace.
You and others say that the dying wait until we are out of the room to leave to help us from the pain. My best friend died in 2013 from cancer. She was in hospice for 35 days. It was a slow and gradual decline daily. Susan had said to me early on, to not have her husband stay at the hospice center when I knew it was time for her to leave. Let him go on home. Susan said ‘it will be harder for me to go if Larry is here.’ I remember her words and it makes sense. Perhaps the dying just can’t let go either and when loved ones are out of the room it allows the dying – - to depart in peace.
Barbara
Hi Louise, thank you for sharing your experience as your mother was dying. When will we who work with people learn that words matters. They convey meanings so far beyond the definition of the actual words. Of course you all would go to sleep after the exhausting, stressful days that you had as a family. Going to sleep certainly did not show a lack of love or grief, no guilt needed for your actions. Let it go and hold on to the gift you gave your mother in her last days. My blessings are with you and your family. Barbara
Hi Louise, thank you for sharing your experience as your mother was dying. When will we who work with people learn that words matters. They convey meanings so far beyond the definition of the actual words. Of course you all would go to sleep after the exhausting, stressful days that you had as a family. Going to sleep certainly did not show a lack of love or grief, no guilt needed for your actions. Let it go and hold on to the gift you gave your mother in her last days. My blessings are with you and your family. Barbara
Barbara
Hi Stacy, thank you for sharing your experience with your Nanny as she was living her challenge with dementia. She was fortunate to have her loving family support her during that time. Blessings! Barbara
Hi Stacy, thank you for sharing your experience with your Nanny as she was living her challenge with dementia. She was fortunate to have her loving family support her during that time. Blessings! Barbara
Louise
Barbara, thank you. I’m a social worker and have worked in hospice care (now work with people with dementia and their loved ones) and I’m so grateful for your posts. I can relate to staff that say things that are not helpful and have a lasting impact. When my mother died my three sisters and I stayed with her the last three days of her life, when we brought her home to die. She was agitated the whole time, and we were treating her agitation with meds, but it continued and none of us were sleeping. She died on the third night, and the coroner came for her body, leaving around 3:00 a.m. We called the hospice answering service just to let them know, but we handled things on our own. We were exhausted from her care and the emotions, and we went to sleep, waking just before 8:00 a.m. to a phone call from the chaplain. He knew she died in the wee hours but he “knew you certainly wouldn’t be sleeping, given that your mother has just died.” I’ve never lost that comment. Even though I know we were physically exhausted and relieved for her, that she was no longer agitated and most definitely needed to sleep after 72 hours of no sleep, his comment always made me feel so guilty. I know it’s not rational, but it is there.
Barbara, thank you. I’m a social worker and have worked in hospice care (now work with people with dementia and their loved ones) and I’m so grateful for your posts. I can relate to staff that say things that are not helpful and have a lasting impact. When my mother died my three sisters and I stayed with her the last three days of her life, when we brought her home to die. She was agitated the whole time, and we were treating her agitation with meds, but it continued and none of us were sleeping. She died on the third night, and the coroner came for her body, leaving around 3:00 a.m. We called the hospice answering service just to let them know, but we handled things on our own. We were exhausted from her care and the emotions, and we went to sleep, waking just before 8:00 a.m. to a phone call from the chaplain. He knew she died in the wee hours but he “knew you certainly wouldn’t be sleeping, given that your mother has just died.” I’ve never lost that comment. Even though I know we were physically exhausted and relieved for her, that she was no longer agitated and most definitely needed to sleep after 72 hours of no sleep, his comment always made me feel so guilty. I know it’s not rational, but it is there.
Stacie Inman
As I read this letter, I was shocked at how the nurse notified the family of the death and her comment about the lone tear. Barbara, thank you for validating my shock and surprise. People don’t expire, licenses and permits expire, people die. As a hospice social worker for almost 33 years, I have witnessed that lone tear so very many times with a patient. I hold the memory of my sweet mother’s tear as a message of comfort that she was being met by my dear Dad and others that had died before her and were welcoming her home as well as a goodbye to my brother and I and our families that she would miss us and her earthly life, but that it was time to move on. This letter was another reminder that we must continue to offer on-going education and support to staff that care for our patients, to their families and to our hospice team members. Thank you for all that you do. I will be ordering the How Do I Know You booklet for our staff and families. The Gone From My Sight is in our admission binders and I reference it with my families at each social work visit.
God Bless you,
Stacie
As I read this letter, I was shocked at how the nurse notified the family of the death and her comment about the lone tear. Barbara, thank you for validating my shock and surprise. People don’t expire, licenses and permits expire, people die. As a hospice social worker for almost 33 years, I have witnessed that lone tear so very many times with a patient. I hold the memory of my sweet mother’s tear as a message of comfort that she was being met by my dear Dad and others that had died before her and were welcoming her home as well as a goodbye to my brother and I and our families that she would miss us and her earthly life, but that it was time to move on. This letter was another reminder that we must continue to offer on-going education and support to staff that care for our patients, to their families and to our hospice team members. Thank you for all that you do. I will be ordering the How Do I Know You booklet for our staff and families. The Gone From My Sight is in our admission binders and I reference it with my families at each social work visit.
God Bless you,
Stacie
Jacque Morgan
My step-mother passed July 8th. She had been dealing with Dementia for quite a while. She went into emergency on June 30th and when I got home from being out of town I immediately went to the hospital. Because she couldn’t speak we had no idea what was going on. We found out her sodium levels were at 180. On July 3rd they spoke about hospice. I had her brought to my house and my sister and I cared for her until she passed. She had actually been breathing “fish out of water” since the 1st of July. We were so grateful to have your book “Gone from Sight” because she was exhibiting the same behaviors. God truly blessed us to be with her when she passed and our hospice team was absolutely wonderful. My sister lovingly dressed her and put makeup on her before the mortuary came to get her. She was 81 years young (6/25/38 – 7/8/19) and was a non-judgmental, kind, and loving step-mother. She will be missed.
My step-mother passed July 8th. She had been dealing with Dementia for quite a while. She went into emergency on June 30th and when I got home from being out of town I immediately went to the hospital. Because she couldn’t speak we had no idea what was going on. We found out her sodium levels were at 180. On July 3rd they spoke about hospice. I had her brought to my house and my sister and I cared for her until she passed. She had actually been breathing “fish out of water” since the 1st of July. We were so grateful to have your book “Gone from Sight” because she was exhibiting the same behaviors. God truly blessed us to be with her when she passed and our hospice team was absolutely wonderful. My sister lovingly dressed her and put makeup on her before the mortuary came to get her. She was 81 years young (6/25/38 – 7/8/19) and was a non-judgmental, kind, and loving step-mother. She will be missed.
Susan
I have 20+ years experience as a direct care volunteer with hospice. That final tear can be a gift, if the family has a handkerchief, or I provide one, you can catch and save that tear,
I have 20+ years experience as a direct care volunteer with hospice. That final tear can be a gift, if the family has a handkerchief, or I provide one, you can catch and save that tear,
Stacy
Ms. Karnes, I cannot express how much you have helped, not only scores of people, but me and my family. My Nanny passed in January and for a year we (4 cousins, an Aunt, and myself) took care of her. We are all mostly mid forties and this was the first for most of us, a first of lots of things. A first being with a dying person, seeing each stage. Nanny had dementia and at night she had sun downers, we never knew what we would have to deal with when it was our turn. She would want up in the middle of the night and sometimes would throw things, look for things, then when she was not mobile she would scream all night. It was a hard time but also we made it also made so many memories that we will cherish forever. One night she told me old stories that I was able to write down. I can still see her sitting there telling me of her childhood. Your blue book was read so often then and was such a help. I would also read every comment people would make, just searching for help. After Nanny passed, I reread the blue book and could see each stage so easily, that at the time it was occurring could not see. You have a gift from God. I also want people out there that is going through the same things that time does pass so quickly and they are not alone. Thank you again for your books and teaching. I just gobble up every word. What a blessing it is to know that death is just the next stage of living and not something to hide from and not talk about. Even though she has been gone a year I still like to read about death and passing on.
Thank you again Ms. Karnes.
Stacy
Ms. Karnes, I cannot express how much you have helped, not only scores of people, but me and my family. My Nanny passed in January and for a year we (4 cousins, an Aunt, and myself) took care of her. We are all mostly mid forties and this was the first for most of us, a first of lots of things. A first being with a dying person, seeing each stage. Nanny had dementia and at night she had sun downers, we never knew what we would have to deal with when it was our turn. She would want up in the middle of the night and sometimes would throw things, look for things, then when she was not mobile she would scream all night. It was a hard time but also we made it also made so many memories that we will cherish forever. One night she told me old stories that I was able to write down. I can still see her sitting there telling me of her childhood. Your blue book was read so often then and was such a help. I would also read every comment people would make, just searching for help. After Nanny passed, I reread the blue book and could see each stage so easily, that at the time it was occurring could not see. You have a gift from God. I also want people out there that is going through the same things that time does pass so quickly and they are not alone. Thank you again for your books and teaching. I just gobble up every word. What a blessing it is to know that death is just the next stage of living and not something to hide from and not talk about. Even though she has been gone a year I still like to read about death and passing on.
Thank you again Ms. Karnes.
Stacy
Anne
Thank you for this, Barbara. I was with my husband of forty years and happened to have a very knowledgable hospice team helping me. They turned me on to your booklets and that helped me to understand what was going on.
I hope you keep on writing so we can be educated on death and dying. I have given many of your booklets to people and they have been grateful for them.
Thank you for this, Barbara. I was with my husband of forty years and happened to have a very knowledgable hospice team helping me. They turned me on to your booklets and that helped me to understand what was going on.
I hope you keep on writing so we can be educated on death and dying. I have given many of your booklets to people and they have been grateful for them.
Joanne Ciampi
I thought your response was a good one, and I agree that the nurse should not have made that comment. Maybe she was new to hospice? I am happy to say that the nurses and social workers I work with do a great job of preparing families for their loved ones death.
I thought your response was a good one, and I agree that the nurse should not have made that comment. Maybe she was new to hospice? I am happy to say that the nurses and social workers I work with do a great job of preparing families for their loved ones death.
Diana
Dear Barbara,
You always have such wonderful thoughts and experiences that you so kindly share.
I will always be thankful to you when my Dad was in the dying process and I sent you an email. You responded immediately. I was in such pain and you were so helpful with your thoughts and words of knowledge and wisdom. I will be forever grateful.
Thank you for sharing,
xoxo
Diana
Dear Barbara,
You always have such wonderful thoughts and experiences that you so kindly share.
I will always be thankful to you when my Dad was in the dying process and I sent you an email. You responded immediately. I was in such pain and you were so helpful with your thoughts and words of knowledge and wisdom. I will be forever grateful.
Thank you for sharing,
xoxo
Diana
Sue Beabout
Very good comments! I also had a grief attack about not being at my husband’s side when he died! He had Alz too. He was home, and I had given him his meds at 5 am. I knew he was close from the blue booklet. But I went upstairs to take a shower, etc and when I came down, he was gone!
Both my grief counselor and my spiritual care counselor told me that he didn’t want me there to protect me!
I am thankful to you, Barbara, for your wisdom and gentle explanations, and totally agree that they are more in the next world than ours. I’m thankful to my counselors as well!
Very good comments! I also had a grief attack about not being at my husband’s side when he died! He had Alz too. He was home, and I had given him his meds at 5 am. I knew he was close from the blue booklet. But I went upstairs to take a shower, etc and when I came down, he was gone!
Both my grief counselor and my spiritual care counselor told me that he didn’t want me there to protect me!
I am thankful to you, Barbara, for your wisdom and gentle explanations, and totally agree that they are more in the next world than ours. I’m thankful to my counselors as well!