Dear Barbara, my mother suffered from dementia. She passed away in 2019. I was at her side and saw her take her last breath. Does a person with dementia know that she is dying? Neither of my sisters made it over before she died but I believe that she waited for them until the last minute.
You asked if I think your mother waited for your sisters to arrive before she died even though she had dementia. Yes, I do believe a person has some limited control over the time that they die, even if they have dementia.
If you are present with a person at the moment they take their last breath, you are there because they wanted you there. If you are not there, just missed the moment, tried to be there but weren’t, that was a choice also. Generally, it is a choice of love and protection. For some reason the dying person thought it would be better if you weren’t there. Being there and not being there are both gifts.
I believe we are more than our physical body, that there is a “driver” to this vehicle we call our body. It is the “driver” that has control beyond the physical. The “driver” does not have dementia, so the “driver” is aware.
Know that the driver is working very hard to release from a non functioning body. I do not believe what we would think of as “normal thoughts” are going through the person’s mind, whether they have dementia or not.
Just think of a woman in labor and what she is thinking about—-getting that baby out. The person that is dying is also in labor, working to leave the physical body, and that is where their thoughts are.
This is a controversial idea—some believe it, others not. My opinion is this: what do we have to lose by talking to the person that is dying, by telling them who is coming and going, by expressing our love and even regrets in the moments before death? We gain a lot if they understand. We lose nothing if they don’t. AND we gain the comfort of speaking from our heart to our special person in the last moments.
Something More about... Do We Choose When We Die?
For those who are caring for a special person with dementia, the dying process is different than for any other disease. I explain more in my booklet, HOW DO I KNOW YOU? Dementia at the End of Life.
5 comments
I completely agree that although the person has dementia some force within remains. My late father suffered with dementia, he died an awful death in a care home in 2021 without any support from doctors as they would not visit in person at that time. This experience will remain with me for the rest of my life. However between his screaming and reaching in the air there was a brief moment when he looked at me with full recognition and smiled. He was briefly my Father again and present in that moment. He had not known who I was for a long time and his blank eyes had not been those of my father. I think of this brief moment as his gift to me and think it is only possible if you are right about a part of him within remaining dementia free. I do hope he is free of pain and confusion now, wherever he has moved on to.
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BK Books replied:
Lynne, thank you for sharing the moment your father reached out to you. It is now a treasured memory. Blessings! Barbara
This came at the best time for me. I volunteer at a comfort house, caring for those who have less than 3 months. This is a frequent question asked by families and you insight will be extremely valuable. Thank you.
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BK Books replied:
Hi Tamsen, Are you familiar with Gone From My Sight and The Eleventh Hour? They will help you in your volunteer work. For more indepth end of life information read my Final Act of Living. Blessings to you in the work you are doing. Barbara
My Mother has dementia,in its final stage. She did ask me why I came to visit her. I responded,because I miss you and love you. When she touched my face,with her feeble hand,it made everything real. Her loving daughter.
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BK Books replied:
Rita, so beautiful! Thank you for sharing. Barbara
I love what you said about the dying loved one “choosing” who is at his side as an act of protection and love.
An experienced and wonderful hospice nurse, who took care of us as much as she did my dying father, told my sister and me that our father wanted the two of us to leave the room. How she knew that … It was a gift she had, because my father had been non-responsive and non-verbal for at least 24 hours. It made sense to my sister and me because Daddy always did his best to protect us from the harder parts of life, so we left. My mother and aunt stayed. It wasn’t long before my aunt came to tell us Daddy was gone.
My sister and I wanted to be with Daddy when he drew his last breath, but that wasn’t what he wanted. It was an act of protection and love on his part. For me, it is a special memory, since it was his last act as the protective, loving father he was.
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BK Books replied:
Cathy, thank you for sharing. As you said, your father was protecting you and your sister. His last gift of love. Blessings to you and your family. Barbara
At age 47 my sister-in-law was dying. She was frighten, angry and in denial. She insisted to her family that she was alright and everything was going to be okay. On the day she died she told her daughter to go on to her job, everything was fine, she would see her tomorrow. As the day progressed the family all gathered. Early in the evening, her son and daughter left to get her sister at the airport. Her husband and brother left to get something to eat. So, I was the only one there. She was sleeping, the nurses came in to tidy her up and wash her, but she was unaware of it. As I stood by her bed she woke up and reached for my hand, asked me where everyone was and I told her. She said, “good!” and died. Within minutes her husband and brother arrived. Fifteen minutes later her children and sister arrived. I think she wanted to leave before they got back. As she died and I was holding her hand I could feel her leaving and went a short distance with her before she paused and looked at me and then turned and went on. For all her fear of dying her death was very peaceful.
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BK Books replied:
Thank you so much for sharing your experience with your sister-in-law. It is a perfect example of having control over the time that we die. Blessings to you and your family. Barbara
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