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

Karla Finn

Hello,

My mom has been in and out of the hospital for the last year. She can’t walk because of two hip replacement surgeries that didn’t go well. In the last 6 months she has started to change – when in the hospital and at home, she screams out for “mommy” and she is very agitated. She has fallen several times in the middle of the night but refuses to go to long or short term care facilities. I am her only caregiver, and I quit my job to do so. Lately she has all but stopped eating. She’s hungry, but it’s so hard for her to eat she only takes one or two bites and I have to feed her small amounts. She rarely opens her eyes any more. She came home from the hospital this last time in hospice care, so at least now I have help and the hospital trips will stop. The doctors all recommended this and that she be a DNR. How long does it sound like she has based on her symptoms? She cannot communicate in any meaningful way, words are slurred.

Any words of wisdom would be appreciated. Thank you, Karla Finn

marion

My mother who was 82, was diagnosed with MCI June 2016 and changes to the brain. we all knew it was more than MCI, but we were unable to get her help. it was just cognitive impairment, and we were told to deal with it as a family, she kept leaving the house and travelling 420 miles in a cab, to visit her younger brother in his late seventies, these trips happened twice, by November, the decline was dramatic, She was diagnosed with late dementia, phycological behaviour and behavioural problems. in January 2017. For a month she improved on medication, then she had a fall , was kept in hospital for a day, the following day 7.00 am we got a call from hospital asking us to get there quick, by 1.00 pm she passed away. Death certificate said ….. upper respitary track infection, sepsis and dementia. We are all still struggling to deal with how quick this happened, how can someone get to the late stage of dementia that quick .

Barbara Karnes

Hi Marion, in response to your mother’s rapid decline verse her diagnosis, it does seem unusual. Fast, unexpected death, and your mother’s death was unexpected, leaves us the living with so many unanswered questions. Questions we will never find answers for. What I see beyond the shock and sadness for your family is the rapid, gentle death of your mother. She seems to have by passed the labor of dying which is generally 1 to 3 weeks and just left. Good for her. Since you did not have an opportunity to say goodbye you might write her a letter now, put all your unsaid thoughts on paper. Write about the good, the difficult, the happy, the sad, everything that you have always wanted to say but didn’t. Let the thoughts, words and tears flow then take the letter and burn it. Scatter the ashes to the winds and as they fly away let the thoughts and concerns go with them. Mom will get your message and you will have some closure to move forward in your grief.
My blessings are with you and your family. Barbara

Barbara Karnes

Hi Polly, it does sound like your husband has entered the dying process. You are doing all the appropriate things—milk shakes and offering but not forcing food. It sounds like he is not taking in enough calories to maintain his body activity which is why he is losing weight. What he is doing is very normal. Eating gradually decreases. Just remember it is food that keeps us on this planet and as the dying process unfolds the body naturally and gradually stops eating.
When someone has dementia how much they are sleeping does not signify the dying process. Eating and not eating is the only gauge for determining approaching death when dementia is involved.
If you have not read Gone From My Sight and The Eleventh Hour you may find them helpful as a guide through this challenging time. Know when labor begins 1 -3 weeks is when you begin following Gone From My Sight guidelines.
Blessings! Barbara

Polly B

I just happened upon this as I searched for information on how you know if someone with Alzheimer’s is dying—it is so timely. My husband is 66, diagnosed officially about 5-6 years ago. He lives in a memory care unit because I work fulltime. In the last 10 months, his weight has dropped from about 170 to 135 (he is 5’11" so he looks emaciated). He is under Hospice care. When given assistance, he will eat and drink, but the staff said they have a very hard time either waking him up for meals or else getting him to sit through a meal (he is still very mobile on his own). I have been very concerned about his weight loss for months, and they are supposed to be giving him protein shakes 2-3 times per day. One Hospice nurse strongly implied she thinks he is dying and this is his body’s natural shutting down process. I would appreciate your opinion.

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