"One Lone Tear", Dementia at End of Life

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.

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16 comments

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,

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.

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.

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

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