Signs of Approaching Death with Dementia

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. 

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188 comments

Trish

Hello, my 79 year old mother died a few weeks ago from Dementia. I have been taking care of her and my dad for the past five years. My mom had Lung Cancer 15 years ago and had one lung removed. She had COPD. A week before she died she was in the hospital for chest pain. My mom has had Frontal Dementia since 2012. Right after we brought her home from the hospital she seemed fine. She was sitting up and talking. The next day everything went down hill. She stopped talking and wouldn’t (or couldn’t get up). She was wetting the bed and stopped eating. The second day she was just repeating our words to us. On the fourth day she was in what appeared to be a coma and developed a very high fever (she never had a fever in her entire life) The Hospice nurse came in because she had developed a sore on her tail bone (which I was later told was a sign of near death). The nurse told me my mom had 24 to 48 to live. My mom died in my arms four hours later. I am so heartbroken and I can’t help but question if I did everything I could have. Should I have taken her to the hospital? What did I miss? I always took such good care of her. I knew she was going to die because of the Dementia but it just seemed like she went from stage 4 to stage 7 in less then a week. I feel like I just let her die. What could I have done?

barbara

Hi Diana, from what you have described it does sound like your mother has entered the dying process. Have you read my booklets How Do I Know You? and “ Gone From My Sight”? I think you will find some guidance in them. How are you answering her question of is she dying? I don’t know how severe her dementia is but if she just doesn’t remember your answers side tract the answer, no point scaring or upsetting her. I would respond once to her question. You can say “Yes, Mom, I think you are. I’m here with you and we’ll do this together.” If she asks again it shows she hasn’t remembered and no need to tell her again. My thoughts and blessings are with you. If you have more questions use my personal email barbara@bkbooks.com. I’ll help you if I can. Barbara

Diana

My mother is 82, she has Dementia and aphasia she has stopped eating because of choking and she drinks just alittle and she does sleep a lot. She keeps asking if she is dying. She is picking I think hallucinations too is she close to death

Barbara

Hi, in response to your question of how close to dying is your wife, I i don’t have enough medical information to be specific but I will say that from what you have described she does not sound like she is days or even weeks from death. I have not heard of “sliding down in the wheel chair” as any sign of approaching death so I wouldn’t use that as a guideline. With dementia you look for food intake, or should I say lack of food intake. When she can no longer eat, (has food put in her mouth but she doesn’t swallow, chokes when she tries to swallow food —then you will know that death is near (days to weeks). Please read my booklet “How Do I Know You”. It will give you guidance and support in your decision making. Telling me that you are wearing down tells me you should begin looking for a nursing facility. You must take care of yourself as well as your wife. If caring for her has become too hard then now is the time to put her in a memory care facility. You will visit, you will love her and you will take care of both of you.
My blessings are with you during this challenging time. Barbara

Nancy Polikoff

My wife has Parkinson’s disease dementia. She is at home and I have an aide during her waking hours. Even with that it is very hard on me. I am considering placing her in a memory care unit. I am trying to figure out how close to dying she is because if it is a matter of a few weeks I would keep her home. We have in home hospice. Her lungs and heart are fine. She is still eating though less. She slides down in her wheelchair. Sometimes she can engage with others and sometimes not. She is oriented. The hospice doctor said sliding in the wheelchair is a sign she is close to dying. I am not sure why. Please help me figure out how to tell.

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