Barbara, Can you finish the portion on dementia and dying that was not finished on your The Art of Manliness podcast?
There are just two ways to die, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it. If it didn’t it would be fast death.
The process of a gradual death from disease takes two to four months (old age with no disease takes longer). Three things are the sign posts that say the dying process has begun: decreased eating, increased sleeping, and withdrawal. These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.
Weeks before a gradual death there are signs we look for that come in addition to decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before death a person looks frail and sick but does not necessarily look like they are dying. In the weeks before death the person now looks like they are dying. (See Gone From My Sight for a description of all the signs of approaching death).
Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Someone with dementia can withdraw from this world’s activities for years, by being not interested, non-interactive, uncomprehending, unfocused. Someone with dementia can begin sleeping more, or even sleep all the time, and not have entered the dying process. Again, they don’t play by the rules.
Their food intake can decrease but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat we can’t live. If the decision not to use a feeding tube is made then the dying process starts. ALWAYS, ALWAYS offer food. You don’t just one day stop feeding someone. Generally, at this point the person is struggling against eating. We are the ones that are concerned. The person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead. Also beware of choking.
When the decision to not use a feeding tube has been made, depending upon the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.
Something more... about Signs of Approaching Death with Dementia
I suggest my booklet How Do I Know You? Dementia At End Of Life to families with a loved one who is dying with dementia.
188 comments
My brother just pass away 2-09-2018, He had dementia for about 4 years. He stopped eating, walking, sleeping, and other things. Was put in the spiral 1-20-2018. It is so hard to watch a love one die with this disease.
Hi Nani, 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. 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. This is a controversial idea—some believe it, others not. My opinion is 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 even our regrets in the moments before death—a lot if they could understand, nothing if they didn’t.
My blessings are with you and your family. Barbara
Hi Kay, in response to your comment on my blog page about your mother and her progressing dementia, there isn’t a lot of guidance I can give you not having more information. I can say that dementia doesn’t play by the rules for end of life. Withdrawing and sleeping can be present for years and does not signify approaching death. Food, not eating, not swallowing are your key signs. If we don’t eat, we can’t continue to live. Always offer food (be careful of choking) but don’t force food.
About how much your mother knows: obviously I don’t know for sure but I always operate on the belief of “what if some part of them knows”. I recommend talking to the person as if they understand. Share coming and goings, thoughts of love and thoughts of regret. Say what your heart needs to say. I believe some part hears and knows.
Do I think she wants to come home? Yes, nobody wants to be in a hospital. We all will choose home and our loved ones.
I do have a concern for you. Taking care of someone that is total care is 24/7 plus so much more. As a caregiver it is not only physically exhausting but emotionally draining. What kind of support system do you have in place for you?
My blessings are with you and your family. Barbara
My mother suffered of demential for 4 years. She past away July 10th, 2017. I was at her side till the last minute and saw her take her last breath. Does a person with demential 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.
Hi my mother has FTl dementia diagnosed June 2016, she was quite normal until she broke her hip in Feb 2017, and deteriorated when she came home with poor mobility, by September she had lost all speech, from March 2017 until January 2018 she screamed all the time, and obsessed about being taken out or going to the toilet. In January 2018 she was admitted into hospital where she remains at the moment, with pneumonia and sepsis, although now awaiting for her to come home, October she was diagnosed stage 2 with swallowing and whilst in hospital diagnosed stage 1, she is very vacant and stares through us all, she is unable to communicate at all and her muscles are contracting and also lost a lot of weight, a stone and eating and drinking less than she usually would. We have been told she is now advanced stages and no longer mobile, we feel she maybe waiting to come home, as we do think she still recognises us all. The hospital seem to think otherwise!
Leave a comment