"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

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.

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.

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.

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.

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