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 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. Both being there or not is a gift.

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 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 in labor also, 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. 



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Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.